Living With Lupus- But Dying of Everything Else

I am Creating a New Truth

2012-01-16T21:58:00.000-08:00

I haven't felt like blogging lately. I haven't felt like doing much of anything. There haven't been many words. There hasn't been much of me to give - not to myself or others or a blog. I haven't felt well.

I've felt the opposite of well.

Today during my TMI session I confessed, "I am no longer feeling suicidal. So there's that." My TMI specialist put her head down and made a note to herself. I pretended she put a gold star in the "making progress on not feeling so overwhelmed and depressed by lupus and resulting illness and medications" field.

It is what it is.

Two days ago I watched a guy I used to date for a short time kiss the girl he's dating now. I realized that he let me go in the height of a lupus flare when I was the most vulnerable and the most sick. Sing it sistah- story of my life? I also realized that we probably weren't compatible anyway- but I wish it had ended or just not started. I don't like there to always be the feeling of being damaged and "the sick girl."

Meanwhile - during our TMI session we talked and there was an over arching discussion of feeling "too damaged." And how everyone - everyone everywhere will at some point feel "too damaged" to be loved. Hence our constant striving for perfection or fulfillment or our numbing (etc etc etc). And the question arose - what now? If you don't pick a lover or a relationship to fulfill you or heal you how do you heal? (You can't self-sooth if you are the damaged one - WHAT solves it? What heals it?)

If you are religious you will pick your god of choice. If you are freudian you will pick your oceanic oneness and coming together of unity and wholeness. And I do believe this is where living in consciousnes and making a choice every day to live with kindness and the realization that we are all always bringing that little tiny edge of damage to each other and no one can heal it. We collectively heal it and we also heal it with conscious awareness that it is what it is.

I'm no more damaged than any other. And no one will complete me or wound me any more than illness will kill me or invigorate me. I am already alive and I am already dying from the day I am born. Getting out of bed each day is a choice. The rest is the cards I'm dealt.

It doesn't mean I don't wish to be in a loving romantic relationship. It doesn't mean I don't wish for excellent health. It doesn't mean I don't wish for great finances and community and kindness and all the beauty and joy and ... you know - great job, great city, great life that many people wish to have and celebrate when they do and mourn when they lose. I am merely recognizing that the absence of any of these things (if they are not from me being a complete fuck up) are not my fault. They are just my process. They are just part of life. I am navigating it.

How am I healing today? How am I moving forward? Some days I get out of bed and the best I can do is already over. And other days the best is created as I move through the day.

I am willing to let go of the idea that I am too damaged to be loved and that no one will want a "sick girl." I realize that this is something I have held on to in order to hide from myself and protect myself from vulnerabilities. They are lies I have told myself and turned into a type of "truth"... but they are not THE truth. I am lovable. And I am wounded. And I am here walking the planet just like everyone else.

Who Am I When I am Not Here?

2011-12-13T23:52:00.000-08:00

I have been afraid to lose myself for a very long time. Every since the first seizures. Lupus is not a kind illness, invisible or not.

In fact, losing ME - my mind, my memories and my thoughts and being psychotic is probably my worst fear. Worse even than not having a family or living "alone." I can have a family of choice and I can create community... but I am terrified of the process of slowly losing my mind.

Over the years I have had help identifying more and more parts about this. One neuropsychologist said to me, "You need to have a sense of humor about these things. If you struggle you will make it worse. If you can laugh, you will find a way to make it easier."

Brains are flexible. They heal and re-wire. Just like hearts. Just like bones. And so I took him literally actually. I went into comedy. I did so much work with neuropsychologists (not just him) and I played games and I did memory games and tricks. And I realize that everytime I lose "spare change" I can get it back. Or it will re-wire. The losses are not forever. And even if they are, I can re-build. If I struggle and freak out about it, it will only make it worse - like lighting a grease fire fire under an electrical fire and throwing water on them both. Instead, I do what must be done to LOWER the stress and "cope"... go back to "square 1, square 0"... calm... I write notes to myself. I remind myself what works. If I don't have a strong short term memory, I allow it is OK. It will come and even if it doesn't, life will go on. Nothing inside is lost. And even if it is lost- in library school we learned that everything can be looked up and if it is written down, it is still available. It is STILL AVAILABLE.

I have faith that I can still find it all again. I breathe. This isn't what I WANTED. But it is what it is. Struggling against it would only label it and create an emotion of anxiety and stress and horror. Humor works better. Saying, "I'm a dork and forget your name" works better than freaking out when I forget names. Laughing when I forget how to knit or need a GPS or cannot spell... Saying, "I spell like a whore"... because I simply cannot remember how to spell. Some things are gone. Some will come back. Step back. Allow. Brains re-wire.

"It is my worst nightmare to lose myself."

"That isn't you." my therapist said.

She reminded me the way I often remind others. I tell them, "You aren't your job. You aren't what you make or what you wear." And she did that to me except she said it differently... She reminded me that I'm what I am on the inside... I'm the love I have made. I'm my SOUL. And this life is a terminal one for EVERYONE. We all die. Unless we die VERY YOUNG or in a freak accident we all suffer and lose our minds in the end. It will happen to us all. She pointed out that the only difference is - I have had to deal with it longer and have actually had time to develop SKILLS at calming myself and creating a type of grace (I don't feel graceful... but I suppose there is a kind of flexibility in how I rest and calm and soothe myself when I am not my best and how I grab on to life and sparkle all over in a burst of energy when I do feel my best).

She also told me a compelling story... about how we are all alchemists. And how we are here with a "life" and hold it like sludge in our hands. And all our experiences begin to press down and form into a rock and become polished and smooth over our lifetime. And over when we die and crossover into death do we "hold the philosopher stone." That's it. Those are our "life lessons"... the ones we came to learn.

I might never know the reasons I have been put here to have these experiences. I'm here to live my best. And sometimes I don't feel great. And I am sad. And other times I feel good and I can have joy. But I do know the she is right. I am my soul. And I have done my best. Looking back there are many times I have lived in fear. Over time I have lived more in love.

No matter what - I'm learning that is really who I am. I'm glad she reminded me. I really needed it. No one can make us feel connected or truly at peace but "god." The same way no one will ever make us feel really "beautiful" or "ok" in ourselves until we stop searching outside ourselves.

I'm still getting it. I say it, but I only "do it" half the time. I am my soul.

I hope I remember that most of the time it is OK to do what feels good and at the same time do what brings joy. And usually they are the same things. (I'll bet if I live with what resonates inside me they will always be the same thing).

Hospital Stays

2011-12-04T20:50:00.000-08:00

Being in the hospital was the very last thing I wanted. It brought up old memories- being helpless. Being sick and not having a say in what I wanted - my ex leaving me because I was sick. My body not doing what I want. Financial devastation. And just monumental efforts to get back on track- and then that blow- called, "no- you can't have a weekend or read a book or knit or even visit friends - you will have IV's and medications you don't want and you will lose friends and you will gain weight and you will listen to doctors whine about how they want to leave at 5pm on a Friday but have to deal with you first..." and all the time you will hold your tears and listen to babies being born and announced and realize they are not yours. And your Friday is meaningless and will be for a long time to many people, especially that doctor. And wonder if you will ever have meaning again no matter how hard you try to make it.

You will think about a guy you tried to date who told you there was hope for a future and realize that he saw it through a lens of healthy and his life was not shattered. And you realize how much of yourself you held back. And how much you never told him. How much you blame yourself for being sick and not ever ever ever being able to get better. And how much you recognize that "just friends" is probably the best you're going to get. And how grateful you are that a few "just friends" stopped by and visited.

It is so conflicting. I see no future. I see no hope. I see nothing getting better for me ever. And yet, some days the best and bravest thing anyone does is just get out of bed. People can be so kind. They are.

Part of me wants to knit and be kind and continue forward. And the other part wants to stay in bed forever and not think about anything all because it is all just more loss. More and greater loss for the hoping and the wanting for anything to get better.

I have always thought I was hard to love. When my friends I have invested in come and visit me I feel grateful. And when they back away from me during my hard times I hope it is because I have hidden my invisible illnesses so well. And that they are only surprised or that they just don't deal well with hospitals or sickness.

Meanwhile- dealing with ME is dealing with someone who will have needs and who enjoys meeting needs. If they cannot come through for me or let me come through for them, it is not a relationship or a friendship.

I have a cat who needs me. I realize that as hard as I have tried to make a life here I don't HAVE to do anything. I don't even feel like eating but I must. This will pass. It always does. Life is like that. Hospitals and shocks to our system - they just do. I wish there were more control over when or how my body was going to behave and then how my EMOTIONS were going to behave afterwards.

I often feel I have done something very wrong to have ended up this way. Life wasn't supposed to go this way. It isn't. Tonight I will feed my cat. And tomorrow I will be brave and get out of bed. And eventually I will find my rhythm again. I don't HAVE to have "hope" for the future or "be happy." Those are someone else's rules and I don't have to follow them. I just have to live.

At The End Who Will Be There?

2011-11-22T23:16:00.000-08:00

There are so many things I cannot blog about because I cannot break the confidence of my friends and family. I just cannot.

The people who are closest to me have been sick - quite sick. And I care about them very much. The people I love very much have been sick. And I feel awful for their pain and suffering. And it hurts me deeply.

Meanwhile- it also makes sense to me in some ways- it helps me find meaning for what I went through - that they will NOT go through it alone. Their heart will not harden in some ways the way I think mine did a little -- because it is HARD to unharden our hearts once we have felt abandoned by God and friends and the world as we go through illness.

It makes sense to me that I can reach out and say, "Here- THIS is what this will be like." Or, "Here - THIS might make it easier," Or, "Here is the name of my surgeon" or even just, "I'm so sorry this is happening."

And... sometimes, SOMETIMES I find that people FLOOR ME with their astounding lack of empathy or their ability to turn so inward they forget that some of us can be far more ill than they and do it "dancing backwards and in high heels"... (metaphorically)... yet they do such a good job taking care of THEMSELVES they forget that if we all take care of each other it feels better. I also forget that sometimes I don't have to take it PERSONALLY when others take care of themselves and do what is best for them. But I do. I do. People often seem HORRIFICALLY selfish to me because I have seen people be SO amazingly sick do such heroic things for each other and be capable of such great acts of kindness. When "healthy" people get hit with "little" bugs or tiny (everyday) illness they often seem amazingly selfish and trite to me when they don't share and reach out. (And it really is because of what I HAVE SEEN. And I need to let people be people and allow that we are all beautiful and amazing and whiny and preposterous and selfish and enormously giving. And if someone isn't reciprocating at least the majority of the time- TO allow it and have boundaries and not judge it but CARRY ON IN LIFE, not try to CHANGE THEM. Wanting people to change is just setting myself up for angst and anger).

Meanwhile - I'm also sad for my family right now. My uncle is in ICU and on full code. This is a REALLY important discussion about this from someone I really respect.
http://www.pallimed.org/2011/01/hospitalists-and-code-status.html We have a very typical family. They don't discuss their wishes. My uncle hasn't talked to his children in 31 years. We didn't even know he was on chemo. I haven't seen my uncle since I was a child. He is older. My mother has been taking care of my dad and didn't feel "right" making decisions about her brother without talking to her siblings. Meanwhile times like THESE it really is somewhat too late to talk to all your siblings and figure out "what is right" for your brother.

I talked to the ICU doctor and asked her questions about my uncles CT scan and the stage of his cancer and what they found in his bones and his brain. It was painful for me to realize that his children were estranged and not interested in making decisions or even knowing about him. Life and death issues are bigger than that. And making someone who is already going through cancer with her own husband deal with it is just so awful.

And also - I realized that THIS is what life is. It is messy. It is painful. And sometimes we mess up and think there is no going back. And sometimes maybe in some ways there is no going back. And I guess some people are damaged so badly there is no one for them anymore. I said, "No one dies alone." My mom cried. This is her brother. The realization hit her that he is alone. Fully alone. He might make it out of ICU but he will surely be in a hospice somewhere and alone. And it is sad. Terribly sad.

We cannot fix the entire world but we can do what we can to not let people be alone. But - RIGHT NOW - we also have to do what we can to mend fences and restore friendships and take care of people and say we are sorry. We need to so we don't end up so very alone and estranged.

I have nothing else to say. I don't know what else to say.

The Art of Living In Pain

2011-11-09T09:57:00.000-08:00

I am responding to a post by a beautiful blogger.

Today I was moved by
Turning Pain Into Art this blog post by Jackie Fox. She's amazing and often inspires me reflect deeply on topics.

I just returned from a doctor's appointment where we only addressed pain. I felt like I was wasting time, his time, my time. In fact, I was a little apologetic throughout the appointment. "I put fentanyl patches on my dad and push food and meds through his feeding tube. His mouth and skin sores make mine look like NOTHING. I get this what I'm telling you is in comparison so minimal. Yet, this is where I'm at. I cried in front of my friends the other day because I have pain. I have shooting nerve pain. Today was my appointment. I'm here."

In my own way I was letting him know that I KNOW it could be worse. *I* could be worse. Things could be worse. Yet, I'm at my tipping point.

When people wear insulin pumps and it gets too low or too high an alarm goes off alerting them and the people around them. They can test their blood. With lupus or other chronic pain there is no alarm for PAIN. There are blood indicators for ILLNESS and blood titers that say, "Yip, you HAVE this disease" but nothing that says, "Yes- your pain is THIS HIGH TODAY" or "your joints are THIS SWOLLEN TODAY."

And - even so, when I have to take it easy, I feel apologetic. I am often the slowest one in a group of fast (or normal speed walkers). I miss the bus or train or have to walk slowly down or up stairs. People have to wait on me. I feel GUILTY. I often worry that people will begin to resent me. And... I worry that the resentment over catering to ME AND MY SLOWNESS (or my needs) will build up. I'm being both practical and honest when I admit this.

You can only miss so many trains or look for elevators before you just annoy people. Or- your mood can only take so many swings from the pain before (and you cry in front of your friends) before you are considered a lose cannon. THIS is why I usually don't answer the phone when I feel my worst. But sometimes I get caught out with it. Then I have to say, "I'm hurting. I'm in pain. I feel bad. Thanks for the love and support."

But how often can one person do that? How often?

I have lived my entire life working to be MORE than a woman with illness. More than my pain. MORE than someone who has an illness identity... yet... guess what. Sometimes it happens.

Once - when I was taking an improv workshop a wise woman said of our body centered workshop that our characters would simply be informed by whatever happened to us. We walked around the stage and let our CHARACTERS BE WHO THEY WERE. I suddenly was a character but I was still in pain. The pain didn't let me JUMP. My character didn't jump either. My character was NOT in pain. It was in this moment that I began my "great performances" where I just lived my life.

I can DO life anyway.

Max (who always had great hair) taught me to keep on in spite of pain. She had endured multiple spine surgeries, had a spine pump, and was on numerous pain medications. She would come to my house in makeup and with her hair done. She was economically spent, but she was energetically amazing. Even on her awful days she would MAKE ME get up, get dressed, and LEAVE MY HOUSE even for 20 minutes. She knew that extraverts NEEDED to be around people.

She knew that we start to die inside without attention and talk and that dressing up is OUR WAY of saying "FUCK YOU PAIN." And so she made me wear cute bras, cute underwear, get cute haircuts and color, and wear awesome lipcolor - EVEN ON MY WORST DAYS. It is why I wear funky glasses. I do it because Max (who always had great hair) taught me that saying FUCK YOU to pain was not about anything other than LIVING LIFE ANYWAY.

Pain won't go away. Life is still there. So I live. I cry. I have awful moods. And I hope that my friends love me even when I do it all badly and mess up. It is work to move through life as a human but it is an art to do it chronically ill and in pain.

Slaying Dragons

2011-10-31T09:40:00.000-07:00

When a friend gave me a giant pixie stix I put it on my bathroom mirror with a sign that said, "I am worth loving." But something happened.

I started realizing how much I freak out when people are TRULY LOVING to me when I'm not expecting it. I feel out of control and I fear the "loss" of self that comes with vulnerability and intimacy.

Someone I love and respect once said that love is dangerous and beautiful and I really resonated with that. But I never realized how much I LOVE people without expecting or allowing them to LOVE ME IN RETURN. I give love but I don't receive love well.

When someone came over here and made me soup when I was sick I freaked out. I just did. I said, "If I let you love me then I can NEED YOU. And if I NEED YOU, that makes me VULNERABLE." Instead of just saying, "Thank you for your kindness to me."

Imagine how hurtful that was to the person making me soup. I felt awful for two reasons. One was that I had a terrible fever and was almost hallucinating and the other was that I was feeling vulnerable because I didn't get to dictate how and when someone was nice to me. Being loved during neediness is wickedly hard for me.

It brings about all those feelings of my deepest needs. And each of us has our achilles heel - the thing we WANT but have a hard time accepting.

So I wrote on my little sign above, "I am worth loving" - "It is safe to be loved" and "I allow love" because I realize that being worth it doesn't mean I am LETTING people love me.

Meanwhile, I have been pondering the quote by Stephen King that people laughed about:
"Harry Potter is about confronting fears, finding inner strength and doing what is right in the face of adversity. Twilight is about how important it is to have a boyfriend."

And while I am no expert on either HP or the sparkley vamps - I will say this: Some things - like matters of the heart and issues relegated to "the roles of girls and old women" are often diminished. I've heard other scholars I respect say nay- it is because Twilight is glorified as literature. But THAT is not what King said now is it? He is mocking boyfriends and romance. That giggling stuff girls do as teens. Yet BEING LOVED and romance and gushy heart stuff is something most people don't get right EVER.

We don't know how to DO relationship with ourselves, our families, our children, our significant others. We have written epic poems about it since we knew how to record our words. It is NOT something for only teen girls. Matters of the heart are only now being mocked as something for teens and old ladies. But they aren't are they?

There is magic in learning to be still with ourselves. There is joy in forgiveness. And there is something powerful in learning how to do healthy relationship with ourselves and with our friends and family and with significant others. This isn't silly tween stuff. It isn't religious. It isn't political. And it isn't just shite literature or day television.

The dragons of connection and fate and fear and vice and sexuality and pain and desire and fighting ones worst moments always come from our memories and our family ties and our early friendships. And those are big deals.

Vulnerability and Trust

2011-10-20T09:18:00.000-07:00

One thing that happened when I was at my sickest was that I went through a great deal of friendships. I just did.

I was always angry. I was angry at my body. I was angry at the world, at myself, my family. NO ONE could do anything enough. There wasn't enough support or friendship or love to make it better. Everyday was an endless grind and it was EVERYONE'S FAULT. I remember. I remember because it seems like yesterday that I had these reactions. I was rarely thinking right and often the people who seemed to love me the most were the people I resented.

They couldn't say or do the RIGHT thing. And I wore them out with my needs. It is why now I am SO much a proponent of both patient and caretaker advocacy... We only have so much to give on the giving end. And patients only have so much "strength" and "right thinking" during some of their weaker days.

And-- sometimes - graciously - people would spoon me - and every ounce of pain would drain from my body. And I would lie there and be at peace and wonder why anyone needed drugs. And it would even now re-affirm my belief in body centered and touch centered care. It is why I REACH OUT for people. It is why I connect. It is why I TOUCH AND LOVE WHEN I CAN.

It is also why I am so willing and ready to apologize. And it is why I am flexible with chronically ill people. Because I know how stupid they get when in the middle of it. On the other hand - I also know that I personally - as a lover, a giver- and someone with finite resources dealing with my own stuff (family, personal, and patient healing issues) need to have BOUNDARIES.

I need to limit the amount of it I have in my life at any given time. I am understanding. But I am also able to step back and say- I'll be here LATER. I don't have the ability to deal with it now.

I do not compare others. I am happy when people have joy in their lives. I am happy when people get married. Or they are in relationships. Or they are pregnant. Or they have children. I celebrate new jobs. Or new houses. Or all the beautiful "moving forward" infinite positive joy in life. Why? Because it says to me, "Life moves forward. Life moves. Life is open to you."

I am open to joy and celebrating other people's joy because for the last few years I have sat in the darkness. And if I only sat here in MY darkness it would have been too dark. But being open to OTHER PEOPLE'S joy kept me open to what is new and what is hopeful. But that is not to say that I had hope for myself. Indeed - I simply celebrated what is humanity and love and joy in others. I now allow that I myself am allowed to have GOOD DAYS. I AM ALLOWED TO HAVE JOY. It must be so. It is the first time in a long time I have even allowed these notions.

--
As I sat around the table in Atlanta I was humbled by the number of people who were willing to either be with me during my darker moments or wait for me. I'm grateful that some forgave me and some waited on me and some stood with me through it. And of course, some friendships and relationships ended.

I'm still dealing with my own internal healing on this. I watch my sick friends and have the hardest time piecing together the idea that romantic relationships or friendships CAN survive illness. Based on my own personal experience (and on much of the research) they cannot. So now, as I am through some of the worst of it I am tentatively going back out in the world and I am more awkward than ever.

I am great at love but I FEEL SORRY for the people who date me in some ways. (yes- I offer a great deal of insight and understanding- but there is also the whole HOW do I do it and do it right thing). It is like dating a woman who fell off her bike and then insisted on not just training wheels but on getting on a tricycle. I'm just that terrified and spazoid about romance, dating, and relationship (especially surrounding chronic illness and the possibility that it will happen again).

So watching people be ill and do it is so bizarre to me. Watching people be "normal" in a relationship is astounding to me. I can never figure out how I can walk the world with any kind of grace or assuredness or confidence in so many ways- but the moment someone reaches into my heart on an intimate level (or even acts like they might want to) I turn into someone completely foreign to me. There is no word for it. - I drive with a gps and still get lost - and I'm that way with intimacy too.

So - people who have dated through chronic illness - with all it's danger and beauty and vulnerability- in many ways- they have healed my heart of the notion that it is HOPELESS. I know it can be done. R loving M during stage IV cancer has healed me that men LEAVE women during the worst of it. IT HAS HEALED ME.

I'm letting myself be healed. I'm letting myself be LOVED. And slowing I'm letting myself be vulnerable and sometimes even be "weak" or "sick" around people... I'm letting you see me on my bad days. I'm letting you see me when I have NEEDS.

Because always having NEEDS meant "you can leave me high and dry" now.

Again - trusting as an adult though- it means trusting with one foot out to catch us... not trusting as a child. We don't NEED rescued... we can rescue ourselves. We can catch ourselves. I need to take care of myself. I need to speak on my own behalf.. I need to say what I WANT... and THIS is also hard.

THESE are all terrifying for me. And watching people do it has helped me understand that it can be done even if life in the past hasn't shown me it was "safe" to do it the first time. I can try again. The first failure onstage one doesn't give up. The first bad grade one doesn't quit school. And so, no quitting on the difficulties of vulnerability and trust.

THINGS I HATE (ABOUT CANCER) AND LOVE

2011-10-16T23:30:00.000-07:00

I hate seeing pain.

I hate when I feel like I am not doing enough for the people who count on me.

I hate when other people feel badly and I cannot comfort them because circumstances are such that it will just work out or not. But they FEEL BADLY AND THEY ARE COUNTING ON ME TO FIX IT.

I hate letting people down.

I HATE this stress. I HATE CANCER.

I hate radiation burns. I hate other people's suffering. I FUCKING HATE OTHER PEOPLE'S SUFFERING. I HATE IT. I HATE IT. I HATE IT.

I hate that I have no one tell because the moment I try to tell anyone it sounds like I am complaining and I only want to share my own pain - NOT COMPLAIN.

I hate my own weaknesses even though I understand them. I have compassion for my weaknesses but I still hate that they are inside of me. I wish I were less crazy and psycho when I want to have love and support and be beautiful.

I want to be wrapped up and comforted but I know that there are no heroes- that I must be my OWN HERO. AND I hate that I am SO afraid of love because with love comes risk and with risk comes pain and there is ALREADY ENOUGH PAIN.

HOW MUCH MORE PAIN ARE WE SUPPOSED TO TAKE?

And yet- without love there is no healing. And without healing there is no LIFE. And without life there is no hope. And without hope there is no joy. And without joy there is no peace. And without peace there is no comfort. And without comfort there is no point.

THERE IS NO POINT TO THIS POST. I JUST HAD TO TELL SOMEONE. SOMETIMES THE DARKNESS IS ENOUGH AND THE SILENCE IS TOO GREAT.

Death and Life and Living Fully

2011-10-10T13:00:00.000-07:00

Everything and everyone is here and then GONE. GONE. GONE.

We don't know WHEN.

You can spend your life trying to figure out WHY. It is no better or worse vocation than any other I suppose.

I have spent a significant amount of my life terrified and healing from the great goodbyes.

My friend just lost his brother. He wrote to me, "You would have liked him Melissa." I'm so sad for my friend. I know he is hurting. I want to touch every living soul and tell them they are worth loving.

Instead I am being loving.

And a little needy I guess... mostly because I am recognizing how profoundly loss and pain and grief affect us all.

We can celebrate our joys. We can use this message to GRAB ON and LIVE LIFE FULLY. We can remember that no one gets out of here alive. It is a terminal track and the ONLY guarantee is a sure death. And our only CHOICE is make it easier for others as they go.

We can choose to be kind. We can choose to live in love. We can chose to be honest. We can choose to forgive. We can laugh when the mood strikes. And we can be serious when not.

It is ok. We can be FULLY ourselves.

And right now my *self* is sad for my friend's who are grieving and for myself a little. I fear more losses and I am unable to remove pain. And I am hurting.

It is our human-ness. We are fragile and beautiful and amazing. It makes us so utterly important. We spend every day forgetting and ignoring and distracting. Life is precariously amazing and easy to overlook.

Death is such a sucker punch. And it is so much to live FULLY and enjoy life when those around us are succumbing every day.

I am sorry that I have forgotten this. Thank you for sustaining me.

Patient Advocacy: Double Edged Sword

2011-10-06T09:23:00.000-07:00

I'm very excited to meet one of my heroes in the empowered patient movement today. There are many such heroes and champions out there - advocates for patients. Dave's "let patient's help" mantra is exciting and inspiring.

As I have said before, I cannot see a place where we can have advocacy for patients, without having advocacy for caretakers, nurses, doctors, pharmacists, and all of healthcare. (and that includes the people who work within the system, like people cleaning, cafeteria workers, service workers, security, house keeping, and all the other "invisible people" who make the work of healthcare happen.) We are all in this together.

I cannot fathom any healthcare getting better or improving or having "patient advocacy" or empowerment without all of these things improving. We must start somewhere. I have heard many doctors use the standard, "patients first" line. And then I have been a patient and caretaker long enough to say this-- THAT'S NOT HOW IT ALWAYS WORKS. I know better. I know that things break down even though it is not what is intended. And I know that we must have checks and balances and we must have people who work WITH us to make it happen.

But advocacy is such a double edged sword... it is so culturally embedded. It is almost like if we (as patients and caretakers) aren't yelling about something or speaking up - (squeaky wheel) that we are left behind. THIS IS NOT OK. There are so SO MANY populations out there who WILL NOT - NOT NOW NOW EVER speak up for themselves. These people cannot be left behind. These patient and caretaker populations must STILL get good medical care. (I can list half a dozen-- so recognize that MANY MANY patient populations are NOT out yapping about their illness or surgeries nor are they educating themselves NOR are they questioning their doctors. THESE PATIENTS STILL NEED QUALITY MEDICAL CARE. They cannot fall through the cracks).

Let me give you an example: Older populations

For example: I specifically worked with a pain management doctor for my father - aside from the oncologist - to deal with pain. My father, of course, is stoic and during most of the treatments has been unwilling to admit to pain. He has said, "If you need oxy, you might as well just take tylenol and if you only need tylenol you might as well not take anything at all, just shake it off." He is someone who has NEVER taken opiate meds and until NOW has seen them as unnecessary. Pain was not something that got in the way, it was just something that one over looked.

His onc writes for oxy. His pain management doctor writes for liquid dilaudid and fentanyl patches. Why? My dad WANTS to try to swallow and having oxy gives him a sense of empowerment. I work with the pain management doctor because I watch my dad suffer and when the pavement hits the road, I see how it really hits home. He takes the majority of his nutrition through a feeding tube and oxy cannot be crushed. Oxy is hard to swallow. That the radiation, onc, pain management doctor and pharmacist don't all communicate is NO SURPRISE TO ME. That my father is loathe to admit to pain IS NO SURPRISE TO ME. When he groans in pain and refuses food and I am forced to push nutrition through a tube - THAT SAYS IT ALL. I don't give a fuck what his onc wants - *I* know what is really happening.

But something awful happened. Something that should NOT HAVE HAPPENED. A breakdown in communication. I use HIS pharmacist and HIS pharmacy on purpose. They know what is happening and he gets all his drugs there. All of them. They've given him liquid dilaudid and fentanyl patches before. But last time my mom took the Rx's they refused to fill them because oxy had just been filled for a surgery from a different doctor. It wasn't the "regular pharmacist" but a floater and for some reason they didn't call the pain doctor to check. (even though it is the hospital pharmacy and not a busy hustle bustle retail pharmacy. When I spoke with the manager today he was amazing and we made it work. But the point is - THIS work- THESE added painful moments of not having proper pain control for cancer patients - it is a doozie.

So he tore up the new Rx's... and my father went without his pain control. And no one told me until I went to use them and they were not there. And guess what happened. LAST NIGHT my father was in ENORMOUS PAIN. And he couldn't take his meds orally. And even so- the oxy wasn't helping. Lately we've been using dilaudid for break through pain. But he's out of them... and what happens now? What happens when I go to use more patches and they are NOT THERE?

EVERYONE needs to recognize that some patients are not able to advocate. The very sick, the mentally ill, older patients, and cultural differences-- they affect how people challenge or advocate for even the most necessary issues. My mother doesn't understand how to "advocate" for my dad or tell the pharmacist that he is a cancer patient and NEEDS more pain control. She is old school. She "trusts" doctors and pharmacists and she "trusts" that they are never ever wrong.

(Even KNOWING that my dad didn't have the patches OR dilaudid, she is going through this awful shit WITH MY DAD. She is getting hit with cancer too. I even yelled at her this morning until I realized that I was heaping more pain on her. She WILL NOT CHANGE. I CANNOT CHANGE HER. And I was being mean to her. I need to do this FOR HER too. Basically- I need to advocate for my mother too. I need to caretake the other caretaker. Hence, my belief that there must be caretaker advocacy. She was unable to recognize the differences in pain medication. She didn't even realize that oxy couldn't be crushed. NO ONE TOLD HER. Not the doctor, not the pharmacist. She didn't realizing many of his drugs couldn't be crushed. And no one told her. But we both tube feed my father. So getting him crushable pills has been a big deal. COMMUNICATION IS A BIG DEAL. (Also imperative that pharmacists recognize their tube feed only patients).

When the pharmacist refused to fill his Rx, she didn't tell me because she "didn't want to make waves" - not realizing that *I* would have simply gone down there, pointed out he was a cancer patient, had the pharmacist call the pain doctor, waited while the manager filled it, and no waves would have been made. The ONLY thing that would have happened is that my dad wouldn't have had to go a day without proper pain control. But when you live in fear of upsetting people in power (who cannot POSSIBLY BE WRONG) you don't see it that way.

In her world, one pain med was all the same. *I* had to tell her that they were different. And that crushing it would be a problem.

And he looked at me and said, "It is time for something MORE." And I couldn't help. I couldn't HELP because I didn't know the entire story. I didn't KNOW why they didn't fill.

So- how did I fix it? I had my mother LISTEN to me on the phone today. I talked to the pharmacy manager. He was very cool. I explained exactly what happened. And of course he saw the Rx's that went unfilled. And he felt awful. And I said, "My father didn't have proper pain control last night because I didn't know that you refused his fills and my mom didn't tell me because she believes all doctors and pharmacists are right and she didn't want to upset you. Meanwhile, sometimes you are - and you see where it broke down. We cannot work at cross purposes. How can we fix this so my dad gets his pain control? How can we make this NOT ever happen again?"

And he rocked. He made notes. He got in liquid dilaudid. He made suggestions for patch control that would make it easier... and even if my dad WANTS to try to swallow how to do the conversions so he can feel in control WHEN he can swallow and how I can supliment when he cannot.

And I said, I am going to let my mother understand this too, so she recognizes and understands all this too. And then we will get these this morning. And I wrote down all the conversions for her. And we made it happen.

I said to her: You don't have to ask your doctor for PERMISSION for pain control. AND if you don't think you can do it, *I* will. And then I scrambled us both eggs. It is a new day. Advocacy only works as much as those who are willing to advocate. And specific generations and populations of patients cannot. If a patient's daughter knows her stage IV father's pain and the mother is trusting - that is a huge deal. I'd call it a clusterfuck - but really- it is what healthcare IS right now.

Reciprocity

2011-10-04T12:25:00.000-07:00

Recently I have been working on integrating more fully the person who takes a lot of shit from people (often because I understand where they are coming from and because I love them deeply) with the woman who "deserves love."

When I ask myself, "What does the Melissa who deserves love think of this?" the answer is very simple - it is often "BOUNDARIES - no more - I deserve better behavior- if you put up with this you will NOT feel worth loving." When I ask myself, "What does the Melissa who is compassionate think of this." The answer is often, "I understand exactly where they are coming from and I don't take it personally."

But recently I have discovered that I am afraid of being loved - truly being loved... and despite my fears I have the most amazing friends on the planet. And they have loved me. And in loving me they have HEALED ME. And by healing me they have shown me what friends do. They have shown me grace. They have created space in my life for options when dealing with people. And one option is that I don't have to consider badly behaved people friends even if I understand them. And I don't have to give them my FRIENDSHIP and loyalty even if I give them my LOVE. I can simply not take it personally.

But I also have to realize that there is risk and vulnerability when we give and receive love. There is an element of knowing the other person can act badly. Or they can stop being in my life. Or they can get sick. Or they can go away. Or they can misbehave. And so can I. And all of this is what happens when we navigate relationships. Not just romance but REAL people-ness.

What happens when we risk? What happens when I allow my compassion and my self-worth to integrate? Oddly- they work together. Because LOVE - real love - is self-compassionate and knows the value and worth of others. It expects reciprocal relationships and it is kind and it enjoys generosity of spirit. And it attracts joy.

So when people go away, it is a self-limiting function. And it hurts. But it is also ok to grieve losses and say, "I deserve someone who SEEKS ME and would grieve for me if I went away." It is also good to celebrate friendship and pay attention to who is actively in our lives.

I am perhaps not saying this as well as I want because it is tied up in the pain of watching my dad suffer. And I recognize that some things are minimized when we watch people go through illness or when we have gone through illness ourself. Some things just mean more to me. And some things just don't mean as much any more.

My friend V once put it best -- She pointed out that we should Call the people who are calling us... and spend time with the people who seek us out. That too often we think the people who are seeking us out are less valuable and the people who run away from us are MORE valuable because they are hard to get. But this is NOT TRUE. The people who are IN OUR LIVES NOW are the people who deserve our attention.

This goes back to allowing LOVE. Let people love us. And give people attention who deserve it from us. Stop pouring attention into people who repeatedly show us they are unable to reciprocate. Be good. Be kind. Be champions. Reciprocity of love.

Mystic And Scholar

2011-09-27T23:21:00.000-07:00

The other day I had a very brief flicker: I wish I had never blogged. I wish this was never here. And I realized it was more that that. I wish I wasn't vulnerable. And I wish that my LIFE was not what it was. I wish I could UNDO my life. And the blogging highlights it because I have blogged so specifically on one topic and left so many other variables of my life removed from it.

I cannot unring a bell. I cannot unlive my life. I could delete this blog. I could burn all my journals and letters. But I cannot undo how my life has transpired. It is lived. History made. I did it even without knowing I would look back and have regret or feel ashamed. Or feel frustrated. I DON'T WANT THAT LIFE I LIVED. I want a normal life. I want an easier life. Too bad. It is lived. It is over. Blogged or not. Observed or not. Witnessed or not. My life is what it is. And here I am.

For a while now I have been having difficulty with my scholarly writing. I sought the help of a woman who excels at helping people sort through their blocks and meet their goals.

Intriguingly enough from her insight and work I have come to recognize that I very much separate my scholar and my mystic. When I am "doing school" I do not "do mystic/healer." And when I do "mystic/healer" I have a VERY difficult time being a scholar. It is as though I have locked one away at all times and made an unnecessary bifurcation.

(Sort of the way we often do jock/scholars. You can be both athletic and smart. Or artistic and athletic).

During one of our sessions I had to hold the image of scholar and the mystic in my head and focus. It was interesting because the scholar "acted up" but the mystic was FINE with it and thought the work was useful and even NECESSARY. The scholar said, "This is bullshit, I'm out of here."

Amusingly, the scholar was the one who ended up the focus of all the work. Sitting there, an old man, dried up of joy, working. Working with no love. At one point the scholar said, "You will never be loved. Who cares, keep working." And I realized THAT is a "fear" I have always felt. And that is what has always driven me academically. I got through my decade long sexless relationship by going to school, learning, focusing ANYTHING but love. And working. ALWAYS WORKING. *always working*

My resumes and cvs often have 2 jobs when I havent been in school and working. I worked full time and went to school full time. "Who cares, keep working." WHO DOES THAT?!!!

Meanwhile- I realize that the mystic and the scholar are BOTH parts of me (not the ONLY parts of me of course, but they are IMPORTANT to my writing, my work, how I interact, view myself, and important to how I approach the world). I have been ashamed of the mystic when it comes to my research and "doing science." I have ALWAYS been ashamed to say that I put THE SAME amount of weight in faith as I do in science.

Yet, I pray. I'm NOT religious but I am a pluralist and I believe in a universal higher power and I VERY VERY much believe in infinite mercy. And the mystic in me has ALWAYS ALWAYS "known" that this is NECESSARY to how I function. I light candles. I live in LOVE. I fuck up. I say I'm sorry. I explore what works. And the mystic in me feels a sense of wellness with this and has NEVER required orthodoxy.

But the scholar part of me has ALWAYS been ashamed of the mystic. I have (as an academic) been ashamed of admitting that I do reiki or that I believe in the power of prayer (beyond the psychological affects). And the scholar in me has always either ducked away from spiritual chatter or engaged it scientifically or culturally.

But the SCHOLAR the scholar is smart. The scholar is ALSO NECESSARY. Without the scholar I would have never been capable of the intellectual pursuits. I need the scholar too.

The scholar and the mystic need each other. But the mystic is NOT ashamed of the scholar. The scholar is ashamed of the mystic and fears what the mystic brings and does. (Intriguingly parallel with our current rational driven life yes?)

Meanwhile- My JOB is to get to know the scholar. Tell him he is lovable. Tell him that he can HAVE love and do work worth loving and be loved. I can give the scholar love and interact with him in ways that make sense. He clearly isn't interested... but he is the one who is hurting lately- and so is his work. (our work) - our life, our career, our vision of how we wish to MERGE our activism (mystic healer) and our scholarship (professor/research/writer).

So- the work I'm doing with this woman has been amazing. And I considered not writing it here. But I realized that it was interesting in a reflexive way. And that the mystic is pleased with it. And the scholar MORTIFIED. And I am not attempting to get them into UNION with each other so much as in CONCERT with each other... a dialogue... a friendship... a dance... a collaboration. I'm trying to think of how teams work together. Is it a partnership maybe?

Wife, Daughter, Mother, Whore, & Improv

2011-09-26T12:55:00.000-07:00

I was watching improv the other day - a funny and good team. And I saw again and again the men be REALLY different characters all over but when they got on stage they would automatically limit the women to one of four things. (I also saw a moment where a woman was on all fours and then quickly got up and start talking like a human rather than just BE a cat or an animal and COMMIT to being something different... which is SO frustrating - because that was THE MOMENT- THE SWEET SPOT when she could have BEEN SOMETHING POWERFUL).

And it is the frustrating thing in comedy where people (often men) will attribute you a role or character of lesser and it is often wife, daughter, mother, whore (and cannot even FATHOM letting you play a man, or a more powerful character like a boss or a scientist or a researcher or a surgeon)...

What's more than that? What's bigger?

I TRY during these moments to just seek the relationship and commit to YES... if I am this WHAT THEN.. what's more than that. What's bigger or more powerful than the sex, the blue, the quick laugh? What's more powerful? What cuts deep?

But it is SO EASY to go for the funny easy than to go for the REAL, the deep, the awkward, the CHARACTER'S REAL... and I see it all the time and I've seen it for YEARS.

It is frustrating because it is the EASY way out. And it is the easy way out in LIFE too.

What's more than that? What's bigger?

I'm still seeking answers because at one point someone said, "OMG, you don't like to go blue on stage Melissa?" And I laughed and said, "No- that's EASY, I'd prefer to find the REAL human connections and get people to laugh because they RECOGNIZE themselves in THAT." And someone said, "Well someone dropped a baby already." And I got mad at that and said, "Well- she was already a wife, a mom, a whore, a sister, and a girlfriend tonight. When that happens and a woman never gets to be ANYTHING ELSE on stage, sooner or later she's gonna drop the baby."

I don't think they got it. They just walked away. And when I was on stage the moment I sat down to play atari with someone in character (I was playing as age old combat and looking for RELATIONSHIP but I'm rusty- I was seeking connection but I've never jammed with this team before), immediately he said, "You're pretty, too bad you're not pixels." Of course, that's FUNNY. It's standup materials. BOOM BOOM SNAP. hahaha. But that's not IMPROVISED CHARACTER DRIVEN NARRATIVE. He could have been playing with anyone.

And yes- I get whored out on stage ALL THE TIME - especially compared to the past teams I've been on where we were TRAINED not to do that. I've been on well trained teams with coaches that made us dig deeper. I want more. I want people to look for more.

And this reflects LIFE, not just improv. Improv reflects life and it reflects connections and it reflects our fears of not letting our scene partner/life partner/ the people we meet BE anything more than someone stupid and pretty and dumb without REAL SELFNESS. It reflects FEAR of emotion. (And here is MY question: WHY are you on STAGE if you aren't willing to GO THERE?)

GO BIG. OR GO HOME.

LIFE is full of real human emotions.

Explore them. They're brilliantly amazingly beautifully hilarious.

Connections

2011-09-23T11:37:00.000-07:00

One lesson a great improv teacher taught me when people couldn't make a show was, "That's one less connection I will make."

I've been meeting so many people lately as I've made new connections in a new city. And one of them is overwhelmingly that they tell me I look like their mother... and that their mother is dead. Most of them deal with it well but a few of them just can't handle the resemblance.

I realize that I probably DON'T really look like their mother so much as I ACT like a mother, a nurturer. I seek connection. And, possibly, I'm finding wounded people right now because of my own woundedness. We tend to parallel or pull in what we need to see.

Meanwhile - last night yet another person said to me that he didn't even want to KNOW ME because of the striking resemblance to his mother.

And it hurt my feelings immensely. I realize that it is HIS STUFF not mine. And also - I realize that it is one less connection I will make. We can't make things personal. We have to understand that people are on their own journeys.

Meanwhile - it is interesting to me how often I hear this. It is hard not to feel matronly when I am told how strongly I resemble a mother. Or I am compared to a mother. But I also realize how much I WANT to be a mother. And perhaps there is an energy there that moves beyond me.

There are universals that speak.. and perhaps right now I am healing a wounded nurturer and they are healing their wounded child. Who knows.

All I know is that it has come up again and again and I am not seeking it. My pain over dead children must equal their pain of their dead mother. And sometimes rather than reach out and comfort or connect, perhaps it is easier to run away.

One less connection. We are only human. I'm not here to solve issues. I'm only here to look inside my own heart and heal it. And in healing it I know I will from other people's stories and experiences. And there will be joy and connection along the way.

It is hard though sometimes - to trust that any of this is worth it. It is hard to believe that there will be anything worth going forward to in the end. It is hard every day to push forward. Especially when I am being compared to what brings people pain instead of what brings them joy.

It has been a remarkably hard week for me. I know that no one will rescue me. I must rescue myself. And so I am. But it would be nice it once in a while, instead of seeing strength someone would look inside and see how fragile and delicate and real and vulnerable I am and not just how many times I can be compared to what brings them pain.

I hurt too in my own unique ways and I never cast them away or made them wrong. One less connection. Their choice, not mine.

Dr. John's Response to My Blog

2011-09-17T10:50:00.000-07:00

I love Dr John Mandrola's response to my blog (on twitter as @drjohnm). He is a man who deals in hearts and has a hero heart.

Doing Not Comparing

..."Put me down in the belief that seeing the positives is a great start. And then…do…if only a little. Do some more. Give life a good shake and a grin.

I don’t have references, but I have the feeling that the human heart likes doing–and isn’t much on comparing."

So- here we go. What the doctor ordered. And yes. "Pedal on." *Fist Bump*

The Right Way To Do Sick Well

2011-09-16T11:42:00.000-07:00

Two of my friends inspire me to replace my stolen bike. They inspire me to get on with living. They remind me I don't HAVE to have the identity of sickness.

I played beer league hockey in Atlanta. I would skate with the most painful back on the planet. I would have to lie down after practice. Somedays I would have to lean on the glass during practice - and it looked like I was just tired - but it was because I was so in pain. I was SO hurting. But it was what I wanted to do.

At what point is "being a sick person" an identity? At what point is someone not allowed to do comedy or standup? At what point does hurting or our elevated sed rate our joint inflammation bigger than what we WANT to do or what we DO? At what point are we not allowed to do something we love (versus what we are ABLE to do)?

Basically - I sometimes don't tell people I know about hobbies or avocations I engage in because I don't want to risk judgement. Similarly - when I DO activities I often lag behind because I am not the healthy girl. It might take me all afternoon to walk what a healthy person could do in 40 minutes. I don't know the answer so I just don't compare myself to others.

The people who have encouraged and inspired me the most have been my friends who are the most fit. They are the ones who do get out and run and ride and get involved. I don't want people to look at me and say, "Clearly she is on stage or clearly she is riding a bike or clearly she is not in bed this month so she is not sick ENOUGH"... OR "Why is she doing an activity when she can't do it WELL or at an expert level?"

But-- THAT HAS NEVER HELD ME BACK. Yes I have fear. But these fears of being judged have never held me back. I've lived with them forever. But the difference is this: I have never been OPEN about being chronically ill. It has been my dirty little secret. NOW that I am open I feel more vulnerable. Before if I had prednisone bloat it could just be me being chubby. Now I feel like I should behave more like a sick girl. BUT I DON'T WANT TO. Or- if I FEEL SICK I struggle with ... how much do I have to be sick to BE SICK?

On some days I'm sicker than others. On some days I have been the worst ever. And on somedays I can do activity. What then? And - if I can ride a bike even with enormous pain- why can't I be active? Or - if I have to lie in bed to write - is that functional? What is functional? What is sick?

Even if I can barely do much - why shouldn't I? I have learned not to compare my comedy or my writing or my teaching or my scholarship and just allow and love. And it has worked out. Why now am I worrying that I'm not sick enough or healthy enough to be "acceptable?" Maybe it is because when you've learned how to be sick and be a patient, you realize that somedays you will be slammed and no matter how well you do illness ore caretaking you will STILL freak out or mess up and go bananas. And in many ways it isn't the crazy days that embarrass me - because I can write them off as "I was feeling awful." It really is me doing my best that make me feel vulnerable and judged. It is hard to live and live well. Especially when we are doing it outloud and know that there is no "right or wrong" way to do it and yet we are looking for our path.

Pondering Cancer

2011-08-24T10:17:00.000-07:00

Yesterday I had a fairly unpleasant experience with people who consider themselves scientists. In the beginning I was having a discussion with them that was only one of dialogue. But two things happened. 1) I wasn't in a good place for people who are rude or unpleasant and didn't realize it and 2) they were not open to ANY research or ideas that were not 100% on board with their way of thinking (and most of their thinking were OPINIONS that used words like, "evidence based medicine" but really just used a bit of data then used a bunch of alarmist words and phrases without considering multiple views. THIS is what I consider the worst parts of many disciplines today. We get so wrapped up in our own little view we mock or refuse to hear other perspectives. No I'm right right right- look at MY DATA.

Meanwhile, I wasn't even trying to prove anything at the time, I was engaging in a dialogue... but again, once one of them starting being rude, I didn't back away or engage pleasantly or stop the conversation - which I usually do... I snapped back.

Usually when I'm not able to be open to multiple views or have a dialogue without getting upset I just don't have one. This let me consider something even better... when people are going through bad times like family illness (or their own illness - or the death or loss of a family member etc etc) THEY ARE NOT AT THEIR BEST. (I was not at my best. Imagine that!)

I'm reflecting the experience yesterday and considering it from the perspective of how my entire family behaved while while my dad was going through his surgeries and we were getting increasingly bad news from doctors. It was an amazing time.

We were actually VERY good to each other. We didn't fight or freak out but actively worked together during the worst of it. We are culturally very diverse group of people and it was amazing to see how we engaged each other... but also very interesting to see how differently we approached difficulties, illnesses, and illness in general.

My sister in law (a woman who has been in our family so long, I call her my sister) is hispanic. When someone is very ill and in the hospital - they pull together with close friends and family to stay at the hospital and never leave the person alone. Meanwhile, as she told me, they worry less about "advocating" for the patient. In her own words, "I would trust whatever the doctor told me" about his health, his medication, and anything to do with his diagnosis. There would be fewer second opinions or checking with specialists etc but far more social support of the actual patient. And she was very much like this.

For me, I was much more genuinely concerned about my father's medications and his pain and that he was being taken care of and getting the care he needed. That he could be at stage IV cancer meant something had been over looked and now I wanted things like pain control when he had pain. Nurses would say, "He's going to have some discomfort." But after multiple surgeries my father is the type of person to be very stoic anyway. And he felt he shouldn't ask for any pain relief. But soon after he would be groaning in pain. This was VERY unacceptable to me and I finally had to talk to palliative care about it (with my father there). They worked with him to allow him to have levels of pain control without doping him out but also without feeling so in pain he couldn't think. And also helped him realize he's not less of a person for having it.

My brother on the other hand is more of a person to give orders- like tell my mother to drink water or get rest. He's the one to set up schedules online for all of us to communicate and make sure we are all on the same page. When we were getting diagnoses and finding out information he was the first to become silent and do research rather than ask questions because he likes to have all the information first. (And I on the other hand like to ask as many questions about it as possible because I like to gather information and work collectively- but it works out very well, and it really was a lovely system).

My parents were amazing together. It was humbling to me to watch them. My mom would take a paper to my dad and go sit by him. I have never wanted a relationship like them until I saw her sit next to him in a hospital bed when he was unable to feed himself or talk and I realized she was there for the duration. And it dawned on me what love really is. Watching them together healed a part of me. And I realized sometimes we are blind to our own family, especially our parents.

And mostly, my friends have been amazing through all this. Cards, and calls, and messages, and tenderness. And I have enormous gratitude for the love and support to take care of my family while my dad goes through treatment.

Ultimately - I realized it is important to know WHY people do what they do. It is important to see how and why people react. I've pulled away from many of my hospice and cancer chats because it's all up in my face every day. Somedays we've had six hour onc appointments and I just don't feel like dealing with it anymore. And somedays I'm fine and I feel uplifted and funny and happy. And somedays I don't know when I'll feel emotionally wonky. Like I'll feel like chatting about something interesting but I'm not in the mood for rude or unkind people and it will come out of no where. But this is part of it. Life happens.

Right now I'm more invested in allowing that I'm OK with being vulnerable and OK with accepting my family's strengths. It is informing my work as a scholar. It is helping me see cultural differences and how we can all work together to be stronger and "in this together." And... it is also just helping me see myself as human. Because ultimately 1 out of 2 men will get cancer and 1 out of 3 women will get cancer and this is how it goes. It is a rough go and we need to be loving and kind. And some days it is harder and somedays it is easier. And every day I am looking for a reason to love. Because I'm tired of shielding and hiding and being afraid. It is time.

When are Crazy Sexy Cancer AND Evidence Based Medicine Both Bullshit?

2011-08-15T21:58:00.000-07:00

I'm replying to Jody's "Back to Reality" post and she is discussing
Kris Carr's Crazy Sexy Cancer Article

Jody says MUCH of what I wanted to say about Carr's article in the times. When people forwarded it to me they said, "Inspirational isn't it?" And I wanted to say, "Sure, it's inspirational, but... this ISN'T what cancer looks like, always." On the other hand, I was once talking to a friend in a wheel chair who pointed out to me, "Why CAN'T people in wheel chairs be sexualized? Why CAN'T people fetishize us just like they do other woman? Why is it, sicker or worse when they do it to us than when they do it to women who aren't disabled?"

And I realized, ok - SOMETIMES that IS what cancer looks like. SOMETIMES people DO kick cancers ass. Sometimes people do run every day, eat healthy food, and get all, "rah rah rah go team" during cancer treatment- DEPENDING on the type of cancer they have and the extent and duration of the treatment. Sometimes it CAN look like that. And -- People LOVE a RAH RAH RAH *CHEER LEADER KICK* story.

People DO NOT like the reality of most illness stories. People don't like what it is to grit it out, to cry, to sit in the darkness of bleak nights - the soul search. Death vigils, or even barely surviving and going into remission, but having long ptsd, or depression, and having to take anti-depressants for a long time afterward, and needing therapy for a while. People don't like the stories of losing friends or lovers or spouses, or that your husband cheats on you or (like me, just fucking divorces you in the middle of the worst of it).

No- they WANT crazy sexy illness. They want to think "OH YES- THIS IS THE KIND OF ILLNESS I WOULD HAVE." No one wants to think they would get ill anyway- but *if* they did, surely they would be crazy sexy during it. Meowza.

My other bigger issue is this: NO ONE - ABSOLUTELY NO ONE- gets to diagnose us into bad health. And NO ONE gets to tell us how we will FEEL during it. There is NO right way to do illness. There is NO way to do it right or wrong. That means - even "evidence based" medicine - while powerful and compelling - doesn't motivate me completely. I STILL have a right to get massage and meditate, and do reiki, and hell- if I want to fucking drink green shit - I CAN FUCKING DRINK GREEN SHIT. And unless my doctor has a VERY compelling reason why not- FUCK THEM. They aren't my boss, they are my TEAM. *I* am in the middle of my healthcare team.

And it is VERY VERY VERY important to remember just WHO AND HOW medical research is funded right now. It is saddens me to say it - but it is NOT being funded equitably to included CAM or many integrative methods. IT SHOULD BE BUT IT IS NOT.

So-- Unless there are compelling reasons WHY something will harm us - and it makes us FEEL BETTER and we WANT to do it - WHY NOT DO IT? (Like acupuncture or reiki etc).

I like to take plenty of B vitamins, D, and magnesium. And frankly - I was taking fish oil long before it was "evidence based" to help with joint pain. Why? BECAUSE IT HELPED WITH MY JOINT PAIN. Who told me - a CAM/integrative MD. And lo- behold... my rheum YEARS LATER handed me a JAMA article about how it will help with my bone swelling and pain. YEARS AND YEARS AND YEARS LATER. I laughed and added more fish oil.

And now - I take more vitamin D than ever. Why? Because it is evidence based. But I was ALREADY DOING IT. I've had an onc tell my father that it might not be good with his chemo. And I asked for the evidence. Not just because he didn't THINK SO- but REALLY sound evidence. Because really- we lose our magnesium during chemo - and frankly- we feel like shit during it. Magnesium is good. I don't want an onc THINKING it will be a bad thing to take magnesium - I want to KNOW it will be bad. And then fine.

I am sick of doctors not liking empowered patients who heal through food. There are too many patients who hoover down shit loads of fast food and awful food and make themselves SICK with shitty food and doctors bitch about them... but when the opposite happens - healing WITH GOOD FOOD (and whole food) -- there is a backlash-- and doctors consider it almost treason to remove gluten or toxic foods like sugar. They almost act as though shoving a donut, big mac, large fries, and supersized coke into our face is BETTER than eating a spinach salad and being AWARE and healthful.

So -- that is my take on crazy sex cancer and evidence based medicine and trusting your doctor and being a team and being willing to be INTEGRATIVE and recognize that there are multiple issues at work. And many doctors have been steeped in western medicine and would rather solve a problem with an Rx pad than lifestyle changes EVEN if lifestyle changes are JUST as effective.

And sometimes - like cancer or other illness which REQUIRE an Rx - well-- those might need BOTH. And I haven't even mentioned spirituality here - but those are powerful forces in people's lives for those who do believe.

Let's just say, I'm in the middle here - I don't think cancer is all that crazy sexy - but I don't think the white coat will save me either. I call bullshit on BOTH OF THEM. I will use the best of both of them too!

Generosity of Spirit and Friendship

2011-08-14T09:15:00.000-07:00

One of the things that has really helped me feel less alone through everything was something completely odd. A friend of mine I've never "met" in person got huffy with me for not connecting with them as much online as usual. I've been stressed about my own health and stressed about my family... and my friend was holding back and not saying anything. I felt they didn't care. They are very well liked online and in their real life they are VERY important and in demand and have an active personal and professional life.

Instead, they waited until we were both available to talk privately and they essentially said, "I've missed you and you've been neglecting our friendship." I REALLY needed to know they cared. I needed to know they wanted me in their life. We chatted for a bit and re-connected. But that MATTERED to me. It really did. I cried knowing that I mattered to someone more than just as a funny person or someone who is around once in a while. I needed to know THEY cared if I am here or not here.

It actually gave me the self-esteem to think about my personal life and how my friends behave and what I believe about myself. Many of my friends are out of state. And that is sad for me- but we do our best to connect and talk. But there are a few I am making here in state. And some of them seem to "allow" me to love them with no seeming reciprocity. And it doesn't feel good. And having my friend reach out and show me that my friendship MATTERS and it is WANTED helped me realize that I MATTER to people. It helped me realize that I deserve to have people in my life that miss me when I am not there and that if I don't text someone for a few days- they should text me back and check in with me and ask how it is going with my family. Reciprocity.

I've found overwhelming support with a few friends. People who have been caretakers or been through illness. People who KNOW what it is like to have a rough patch. And sadly- I've found a surprising lack of it in others. People who have asked me for favors or who have pretended to be genuine but interestingly the moment I not in their lives I am out of sight out of mind. That hurts me, but at least I know. It helps me re-evaluate. And it helps me understand more about what I need in my life.

I NEED to love and be loved. I need reciprocity. I always have. There is a balance in life of kindness and sharing and taking care of people in need and in receiving love. There is a balance of joy even through pain.

People have been very good to me during my dark times. Some have offered to send me gifts as acts of love. And though it is difficult for me, I am learning more and more to open up and receive these with joy. To accept that I am worth loving. And know that I can show love and kindness and generosity of spirit to others when the time comes. And know-- that I need to make wise choices in my friendships (even though sometimes we don't ALWAYS know up front how people will act, so sometimes our relationships simply need new boundaries or re-evaluated once we have learned more about people or ourselves).

In my case, I have a loving heart and I take people at their word... and many times, I have not stopped to listen or see if there is a tit-for-tat or true balance in relationships. I just trust that things balance out when there is LOVE. But I am learning that SOME PEOPLE who have not grown- truly grown, have no interest in being this way. And THOSE PEOPLE are the ones that I need to be wary of, especially when I am vulnerable and hurting and sad and dealing with illness and caretaking and loss. I tend to overgive and over love - and those people tend to overtake without feeling a sense of either gratitude, reciprocity, or generosity of spirit.

When there are no boundaries or no balance in our relationships, it is easy to feel taken advantage of and resentful. This is my job. I am learning it. When people WANT ME and reach out for me and say, "Melissa, where are you - why are you afraid to reach out and ask me for help?" THAT is someone seeking relationship with me. They are telling me not to go it alone and they are telling me they are HURT that I would give love without accepting love from them.

People have given me their phone numbers who are not HERE. They have checked in every day to see how I am. And THOSE PEOPLE are teaching me what it is to RECEIVE LOVE and to HAVE LOVE and to know that I am WORTH LOVING with ZERO holding back.

I am truly grateful for this juxtaposition so I can see and feel and hear and do love and make wise choices in my daily life. It is an ongoing experience. It is new to me. I'm grateful for the experience so I can grow and recognize how people act lovingly and show love and do love. Love is not diminishing. We do not come away feeling resentful or used or unacknowledged from our kindnesses. And THIS is how I am learning friendship and support and generosity during my darker times.

The Tables Have Turned

2011-08-09T21:58:00.000-07:00

My dad went in to the doctor thinking he had strep throat or an infected gland and came out yesterday after three surgeries with stage IV cancer, a trach, and a feeding tube and a consult with an onc tomorrow.

There is a certain helplessness to being a caretaker that extends different from being a patient. As a patient you are never separated from the pain, the horror, the difficulties, or the reality of what you are facing. And as a caretaker you can "take shifts" from the demands of all this. You can clean body fluids and body parts and meet physical needs and then LEAVE.

However, there is also a certain urgency I feel watching my dad be in pain. I told his palliative doctor, "My father's suffering is causing me to suffer." His pain hurt me.

And bringing him small joys makes me happy. He likes to swish with coffee because he cannot eat. He doesn't even want to put coffee IN his feeding tube, he just wants the taste of coffee in his mouth. It brings me INFINITE joy to do this for him.

There are things I do that I find repulsive - like getting vomited on or snotted on through his trach - and I just wipe it off. There are things I do that I am terrified of doing and I do it anyway, because it MUST BE DONE.

And I remember caring for my own body in this way- but doing it with much less love and much more grim determination. I cared for my own wounds or damage, or I give myself injections because if I don't I will die. I do it for my father because I LOVE HIM and I wish to keep him alive and comfortable. There is a sense of gratitude that I CAN give this to him. He took care of me and helped me and now I am doing it for him.

Meanwhile, I am also noticing, with much unpleasantness, that the stress of this is certainly causing more of a lupus flare. I have mouth sores and had to drink milkshakes for the last few days. I TRIED to eat solid food yesterday and the eating almost drove me to tears.

When I sit WITH the emotions - truly SIT with it, I feel overwhelmed and so sometimes I simply stay with what we are doing in the moment. We are right now.

I am sitting in the darkness. Yet, as I told someone, I know that god made the dark as well as the light. And so I will sit with it until the light comes back. I DON'T want to do this alone. I feel very lost. There are unspeakables - and so I don't.

I feel incredibly selfish to be adopting a cat- but I wanted someone or something to touch me and give me human connection and to keep me feeling full of LIFE and joy. I want to feel joy again without feeling like I'm swallowing the world inside my throat every day.

Nothing feels right. I don't feel right. My skin feels too tight and I'm cranky and tired and angry and sad. I don't want this.

All Of Me

2011-08-06T11:41:00.000-07:00

I wrote the other day - "The greatest gift we can give the world is to be all of who we are."

Lots of people responded positively to that. But I never finished my thoughts.

What does it mean to be all of who we are? What does it mean to truly develop and heal and come into our fullness?

It is a vulnerable process. It requires a willingness TO HEAL. It requires a willingness to FEEL. And you know what - FEELING often SUCKS.

How often have I been AFRAID to do something. I have lived a great deal of my life unwilling to do something. "I don't WANT to go through this." I am very risk adverse. Though I seem powerful and passionate and high energy - there is a strong core of safety and stability as well. And this safety and stability (the one who shows up for work, for class, and gives her pets their medicine) - is the one who also clings to situations that won't put me in situations that MIGHT make me deal with lack of safety. (whatever safety is in that moment).

I have often been UP for SPEAKING OUT on behalf of OTHERS. I will be on YOUR SIDE if you need me, even if it is an unpopular side. I will listen to all the perspectives and understand that there are multiple truths and that there is NO ONE RIGHT - everyone can be right. And even this - is not a popular stance - because people might want me to take a stance, and my stance is "yes to all"... and yet I am VERY confident and VERY sure that we are all in it together. And there is no "win" or "lose" unless we are at war with each other.

But when it has come to ME -- I have taken a far longer approach. I have not been willing to FULLY FEEL. What is it to fully feel my anger? My pain? My loss? My grief? What is it to admit I WANT something? What is it to ASK for what I want and then GRACIOUSLY accept it?

I am thinking more about my strengths, my gifts, and what I offer. I am considering my soul imperatives and what I have completed and by what means I have done them. I am also recognizing many ways I have committed what one woman calls "a soul sin" - when you act against yourself.

In many ways I have kept my blog free of all outside family and professional references. I'm reconsidering this view. I'm reconsidering why I have done this and how I have used this. If I am TRULY an integrated being, why is THIS only being used as a patient voice? If I am a woman who has MORE than an identity of "just" a patient, why then have I ONLY shared with you that information.

Often it is to protect my family and students and clients. And - because I am inherently private. And so much of my limiting in this blog is also self-protection - to share in a limited way and to be the Melissa I want to be seen AS and to tell the story I want to tell without telling an INTEGRATED STORY. But I am deciding that in order to solidify the idea that to BE all of who I am - It is a willing process to both FEEL and not numb, and know myself as all of who I am - even if I have never recognized that before - or I was wrong (brains think - but they can think wrongly in a loop). I will share a little more fully without breaking confidences. I will be more integrated here as a symbolic act of healing.

I am a Patient. And I Matter

2011-08-01T00:23:00.000-07:00

It always astounds me how very much I WALK in the convergence of patient-ness and me-ness. Even when I don't mean to or want to - I AM a patient. Thus the realities of being "one who suffers" crash home all to often.

It happened for me when my marriage broke down and I ached for it not to, yet I did not know how to stop it. I was so sick at the time YET I DID NOT KNOW HOW TO DO BETTER. I DID NOT KNOW HOW TO BE A BETTER PATIENT. Like a machine I could cite the research indicating how certain patients lose up to 80% of their friends and many marriages end in divorce - (even mine)! Even knowing the data didn't stop it. I COULDN'T STOP IT. It wasn't even self-fulfilling. It just happened.

It is like knowing a tidal wave was coming and being unable do anything but watch it move over the roof of your house and cling to what you love, and watch it wash out to sea anyway. That is what illness is sometimes. It is watching your life float away just out of reach and everyone around you alternately asking you for money to help you or leaving you because you are too much of a victim or sometimes, just sometimes, you can "inspire" people with a message if you are "strong enough"- BUT AT WHAT COST? AT what cost?

Even now I feel a sense of looking into an abyss when it comes to romance - as though it will never happen for me (again). As though I had my shot at family and connection and building it again is laughable at best. Though I trudge on because I know I am worth it - and I know I must at least have a profession and LOVE MYSELF. And so I AM.

I watched even the other day during a lumbar puncture - how I reacted to discomfort and pain. In one fMRI study they found that men and women reacted differently. Men tended to (when put in pain, close down emotionally and women reach out - and their very brain structures change). I made note of this but never considered it until NOW. The other day during my spinal tap I was feeling very alone. It was a routine outpatient process and I was very much "invisible." I said, "This is very uncomfortable." And the doctor asked me, "What are you feeling?" I told him I could feel the needle and that it was unpleasant. He put more numbing there and continued. But he got paged and was upset and began grumbling. And I said, "Don't get upset while you are working on me. It is not TIME for that. STAY WITH ME. Be with me right now."

I was reaching out and reminding him THAT I WAS THERE. I didn't mean to. I realize now that I was simply so alone in the discomfort and I didn't want him messing up out of being angry or over burdened. And I said, "I don't want to be alone in this." Nothing more was said. Of course - doctors like that are not overly compassionate. But I realize NOW that I was doing EXACTLY what research shows women do when they are in pain. They reach out. They seek connection with their environment. We are the sum of all our parts. And though I have tried to live as best as I could the entire time. Looking back - often I am very much a "typical patient" in that I reflect exactly what the research indicates. This astounds me. It really does.

In sociology, we talk about people who go through a great tragedy, like job loss or illness, we can watch what happens to OTHERS and see that it is a social problem and say that it is too bad and shouldn't happen. But when it happens TO US, we tend to self-blame, and hold ourselves accountable and to a higher standard than we would other people. I have certainly noticed this about myself.

Other people will say, "You have been through a great deal, give yourself a break." But it angers me. I want to be where *I* WANT TO BE. I am driven by the same goals and dreams that I always was. I don't WISH to modify it. I wish to push through and be a success. I wish for the picket fence and 2.5. Yet I have already had that explode and shatter and shatter and shatter.

Part of me wants to say, when can you give up that dream? When can you just be happy because? I asked someone today, when have you been content? And he replied, "never, I am a shark, I must always be moving." And oddly- I used to be him! I never used to stop and congratulate myself or let myself BE HAPPY or content or feel REAL JOY. I never celebrated. This person and I have much in common in our drive and how we view life.

But today I told him many tales of how much happiness I have had in my life. Moments of friendship and connection and teaching and gratitude and even times with my ex when I have been blissfully happy. And I realized that watching my friends die and watching people reassess their values from illness and loss has given me a gift far greater than I even knew until right now in my life. THIS has been a great gift.

I know in my heart how valuable people are. And I know know how valuable life is. And I know how short it is. And I know we all deserve each other at our very best. And that always means kindness when we can and forgiveness and honesty and integrity. All the inner qualities that MATTER TO ME. This is how I know that what I am doing IS WORTH SOMETHING. That what I will leave behind in this life COUNTS. It has meaning. I am living. I have a life. I am doing my very best with what I was given. And I mess up and that is OK. And I am not always happy. And that is ok. But I have gratitude. And my wealth is in my friendships and love and the experiences I have been given. And someday - someday even wisdom as I reflect.

People matter. I matter. You matter. WE MATTER. This matters.

Knit Worthy

2011-07-20T11:19:00.000-07:00

I have never knitted anything for myself. I have loved yarns. I have coveted projects. I have ever procured yarn for idea of making something for myself and never followed through because another "more important" knitting project came up. Simply put, I have always knitted for other people.

I have always given my knitting away as gifts. There is a phrase people use around me called, "Be sure they are knit worthy." I never understood it and cannot say I have ever followed the advice. Many of my knitting friends knit exclusively for themselves and no one else. Some find a middle ground, but most knitters I know, wear their own knitting.

I simply knit for people I love. I can see why people would feel a need to have, "knit worthy" recipients though. Along the way, several of the people that I knitted for have dropped out of my life. Some of them VERY long-term friendships. Many of them did it when I was very ill. And one, did it on my birthday via e-mail instead of sending a greeting. "I know it is your birthday but I just don't think we are in the same place anymore in our lives" the e-mail said.

I am working on forgiveness right now. She is one of those people I need to forgive. It hurt to lose someone right when I needed the most support. I was losing my life, my husband, my house, my garden, everything I knew. I needed social support. My life was shattering. I felt lost and unlovable. And, I got that e-mail on my birthday after not hearing from her for a month. Of course I suspected she and I were growing apart. But we had been friends (through thick and thin) for years.

Even after she behaved badly and I forgave her when her other friends did not, our friendship thrived. But illness was more than she could "tolerate." I felt stolen from because I had knitted with such joy for her. And all while I knitted I had nothing to do but think of her. And THIS is why people say "be sure they are knit worthy."

Another friend who is a mentor of mine, knitted a baby blanket for someone. When she gave it to the couple the male partner said, "Oh great, another fucking baby blanket." The women recipient chided him and said, "Oh, it is lovely, thank you." But my mentor was very hurt. And she said that she had spent so much more money on the yarn and supplies, as well as time and energy knitting the blanket than if she had just purchased something from a big box store for the couple and slapped a tag on it for them.

Creating from the heart is vulnerable. Gifting is vulnerable. And being hurt when we give gifts of love even more so. It opens us to pain we did not know.

Many of the people I have knitted for in the past are no longer in my life. I think about the people who have knitted, or crocheted, or handcrafted for me and I recognize how very much I treasure these things because it is very much like being given a piece of their soul. Their open hearted expression of love.

This afternoon a knitting friend said to me, "It is your turn to knit for yourself. Your next project it is your turn to knit for YOU Melissa."

And I felt at first offended and a little taken aback that she would say this. But I pondered her words and realized that self-love, and self-healing, and being "knit worthy" are all part of the process. And I DO have projects I have set in store for me. And I love symbolic healing. And I have often put off "doing for myself" in order to "do for others."

Many times I have felt "unworthy" of love, and unworthy of speaking up for myself... and maybe though I LOVE gifting from the heart - there is a small amount of belief, that I am unworthy of my own love and own knitting... Maybe in my core, I have never found myself "knit worthy." So on Saturday I am beginning a new project requiring advanced knitting skills, with yarns I love and it will be ALL for me. And the joy there is, I will not go away. I will show up for myself. And I can meditate and ponder how "being loving, and being loved, and being worth loving" are all interconnected -because they have all been such a sticky wicket for me throughout my life.

Sharing Our Truth, Asking For Our Needs to be Met

2011-07-18T13:16:00.000-07:00

This last week has been one of some enlightenment, some introspection, and some connection. I work well with symbols, especially when I am connecting abstract healing ideas into concrete "do-ing." One thing lately I have struggled with is speaking up for myself.

The symbols here are communication devices. Recently, my phone was ruined by water and my computer hard drive seems to be failing. Symbols. I am working to see how I can effectively connect and stream all my devices together again and get them all backed up, "synced" and communicating well. I am also mourning the loss of some data, pictures, and information I will never have again. Meanwhile, when our devices don't work they don't work, they don't work in a big way. And I notice. I can't take calls, I can't get on the web, I can't write or publish, or connect with any of my friends. EVERYTHING I do is reliant upon my computer and my phone.

Right now I am working on communicating my truth and speaking my needs. In the past this involved so much fear I would either hold it in, or worse, EXPLODE because the act of speaking up for myself caused me so much fear I would react in anger and pain and fear and the resulting aggression would be so profoundly overwhelming.

(I think I believed I was so unworthy people would say no, AND I hated being a burden! I remember after a surgery a nurse asked me if I wanted anything. I wanted a popsicle so badly but I felt so worried for "putting her out." I said, "I know I'm not a princess but I would so love a popsicle because my mouth is so dry." I felt so guilty and like such a burden even though I was in pain and hurting I never thought of my own suffering, only in protecting others during it. THIS is finding a balance between not being a pest and meeting our own needs. I suspect many chronically ill people must find the balance between invisibility and loudness - since our bodies often react so loudly, perhaps some of us become overly quiet about our needs sometime.)

I always wondered WHY I would over-react. I didn't want to say, "I hate you!" Yet I did! Why? The resulting guilt would result in a cycle of NOT speaking up for myself once again...

So- lately, of course, I've had the opportunity on several occasions to get hurt feelings AND shoddy customer service AND get to speak up for myself! These opportunities were gifts in that I was able to be calm and connect with what worked in the past and what didn't work, and then self-soothe, and say to each friend that hurt my feelings what and why things weren't working and what I would like to see instead. One friend held out their hand and said thank you to me and our friendship grew. One friend did not. But in both cases, I felt very much heard and I felt very proud of myself for speaking my truth and honoring my needs AND asking for what I wanted in a way that allowed each party to say what would or wouldn't work. Clearly the friendship that didn't grow, would have never grown, and so while I feel it is a loss (for both of us, the gain to myself was that I expressed my own self-worth AND that the other person was worth my time and love).

It never feels good to know someone does not value us as much as we value them. But sometimes things are not about us. Sometimes the places we are in our lives are not intersecting. And- sometimes, the love we have to give cannot be heard. I know this from past experience when people trying to offer me love fell on deaf ears because I quite simply did not know how to interpret myself as worthy of love. It is hard for me not to take this personally. But I am learning this as well.

As I heal physically, I am learning that asking for my needs to be met INCLUDES my emotional needs as well. They are not separated. I am a whole person. I do myself a disservice if I do not see this and act as a fully functional and integrated woman.

The customer service experience was a little less positive in that I neglected to speak up for myself on the first go and had to return a phone that clearly wasn't working the second day. This time, I was pleasant and used a little humor as a sweetener, but the manager replaced it and I received a properly working phone.

Symbols. Some loss. Some friendships stronger. Some people know me better and love me more. I know some people better and love them more. Some people have chosen not to extend our circles of trust, though it was offered. I have learned how to speak up for myself and share my truth without over reacting and that it can be accepted. I am grateful for it. I'm surprised sometimes how easy it is for me to defend others who are weak or need my help, but how shy I am of speaking up for me and how awkward I have been in learning how to do it in an even manner.

Hopefully it sticks. I'm happy I finally feel like I'm worth loving and that losing me might be a loss. It has been an epiphany to consider this because I have so often considered what love I give others and how much love I feel when they love me. I never considered I might be necessary or valuable -- so somehow the act of speaking up and sharing my truth with love in a gentle fashion, sparked that in me just a little.

If You Really Knew Me You Wouldn't Love Me

2011-07-11T22:21:00.000-07:00

Fear of being known versus sharing our real selves

Many times I have stepped away from the real connection or found myself retreating from the harder healing issues because they were challenging to me. My "prickly" spaces are like anyone else. I have areas that trigger me and I introspect and share and heal by blogging or talking or bringing it to friends and allowing them to love me and know me.

One of my bigger areas of healing is truly my health. If people "know me" they won't really love me. If people "see all of me" they will reject me. I have "hidden" behind humor and my intellect for many years. It has taken me a long time to start to heal certain areas of my life. And even now I stumble and I forget to trust. (And sometimes when someone triggers me I freak out and instead of using known soothing techniques or conscious techniques I personalize it).

Sometimes things really are about someone else. Sometimes people behave badly because THEY have problems or they want to pick a fight or THEY don't know how to connect or respond. Sometimes it isn't about us. Yet, when we are being triggered or have fears, and we are in relationship with other people who are afraid of connecting or being intimate - (and are perhaps not as aware they have such fears), we both trigger each other. Put us all together in a room or work place or family and imagine the sparks. We're all touching each other's wounds and triggers and people are shutting down and pulling away and emotionally disconnecting.

Life really is a balancing act. It is about sharing and connecting. It is about loving ourselves. It is about our willingness to heal and do the work that allows us to heal. And sometimes it is about accepting people as they are.

Yes. I fear being known. Yes, I am willing to shine the light into this area. What is so ghastly about being known? We'll meet people along the way who will simply walk on. Some will go with us into the place and become real friends. It is worth the risk!

The Not So Good

2011-07-08T23:54:00.000-07:00

I am fairly sure I am having a lupus flare. I know by now I should be used to this. I am very very tempted to stop taking all my meds and give up. But I won't. I can and will get through it - just like I always do. I am hitting a depression (again).

I am pretty sure this DOES NOT have anything to do with anything in my private life or missing Atlanta, or my cat dying, or self-esteem. I am pretty sure this has to do with a mood swing. I have a low grade cycling fever and I feel like I have the flu. I'm fatigued and have the joy of getting mouth sores and lovely mylar butterfly on my nose and cheeks. I'm bruising where I self-inject, but that is to be expected... but right now I'm having a horrific time swallowing my meds. And I can usually toss back a fistful of meds at a time. Lately I have to take them one or two at a time or I choke or gag. And of course, I have a GERD - which I rarely get. Its here. Again. I want to sleep all day. I feel awful. Like constant PMS. I've been needy and cloying and no amount of reassurance feels like enough. I feel abandoned.

THIS is probably why I was having such an awful reaction to trying to meet new people. (And it has cost me some friends. I have acted needy and unlike myself). I've not been able to make myself even go to yoga or standup. I simultaneously yearn to be around groups of people to satisfy my extrovert personality yet I'm terrified of going out in new situations without a friend or someone to keep me safe. Last week I wanted to go to knitting but I sat behind my computer monitor, frozen in an agoraphobic haze until the shop closed and they texted me to ask if I was OK and I lied and said I was busy writing. (I was, but how do you tell people what you're REALLY going through? I want them to think of me as "normal" not a freak. So I just apologized for missing and said I'd be there next week). I know those people. They are friends. I LOVE to knit! THIS is it. Hello lupus.

I have a rheum apt in a few weeks, so I'm not really going to do anything but chill out and take care of myself and rest and stretch, and relax, and stay out of the sun, and take some advil, and see if this calms itself.

I hate this. I have been doing this since I can remember. I know this. I can do it. I just don't WANT TO do it anymore. It is likely that some of my medications are interfering with each other and perhaps I need to tweak or take them further apart to have full effectiveness.

I can do it. Life is always complex. But I will be OK.

State of Grace

2011-07-04T11:42:00.000-07:00

A beautiful friend of mine says of grief or onslaughts of illness, "You are in a state of grace." So people who are grieving or questioning their life, feel OK to rest or look to others or in any way "melt down" and not "function" in their usual emotional capacity.

I love that about her. It puts real language on both my own grief and others... as well as how people who are both caretakers and patients need to be gentle with themselves when they are new to illness and learning to *be* patients. A "State of grace" makes it easier to forgive ourselves and others.

It also helps consider other people's perspectives when I think about how much I leaned on people and how much they helped me through... and also how many people couldn't handle me when I was at "my worst." Yes, I might have been in "a state of grace." But they didn't know it. And I had no right to expect them to know it.

And illness and grief and hard times are when some will stand up for us and some will leave us. It is a learning experience. For a while I lost all faith in god and humanity. But the human compassion I saw from all angles actually more powerfully RESTORED my faith rather than chip it away. Perhaps on a small level, I have a deeper understanding of how people can fail both themselves and each other (and me). But on a greater scale, I know how much we can be better humans. We just can.

A comedy coach once said, "Your best friend can mess up and stab you in the back and your worst enemy can pull you out of the fire." He was teaching us how people are not all stereotypes and how on stage we need to remember the qualities of HUMANS. If we are going to be "trailer trash" on stage, we need to remember that perhaps she will become a surgeon inspite of our belief in her trashyness... or perhaps a wealthy woman draped in diamonds will cover her steak in katchup... because we all have those qualities. All of us. We are all "sinners and saints." All of us.

Meanwhile, I have done TWO THINGS as I have begun to heal emotionally and focus more on what being truly ill meant to me. I have begun writing thank yous to those who supported me the most. My doctors, my friends, and those who truly came through for me. And there are LOTS. It has taken me a while. And, second to that, I have begun writing apology notes to people that I failed during my illness... and while perhaps I was in a "state of grace" and there was no "better way" to do it (at least I didn't know it at the time) - they still deserve to know that I am sorry that things happened the way they did.

I don't want illness to damage them. I don't want them to be afraid of illness or of people. And if I can reach out and tell them that there is a better way, or just touch them and say, "I'm sorry that my being sick and unpleasant touched you badly during this time" - can help heal them - I want it to. I did NOTHING on purpose... and my ego part doesn't want to apologize. But my true spirit of loving and healing believes they deserve it.

There ARE people in my life that committed such true boundary transgressions they are gone. And they are gone and we will NOT TALK. Some times people will simple be mourned and the loss is real. And that is that. But for the rest, I am loving them and sending healing in the only way I know.

What is sad is that many of the recipients of the apology notes are not responding. But I recognize that there is NOTHING I can do about THEIR actions. In truth, and in my own heart, I am doing something I believe is ultimately right. I am healing myself. I am letting them know that they did nothing wrong EITHER. And that is more important than my own ego... But I want to acknowledge that there IS a state of grace. And we all deserve it during difficult times. And when we are able, we can reach out in both gratitude and healing to healing the world and create a better place.

I am doing my best. I am living in honesty and integrity. And it is not always easy but I believe it is worth it.

Scars Are Beautiful Until They Are My Own

2011-06-27T19:09:00.000-07:00

Someone once quoted the words, "none of your scars can make me love you less." And I replied, "All of your scars make me love you more."

The rub here is that I don't feel more beautiful because of MY scars. Not my physical scars and not my emotional scars. I even worry that when it comes time to apply for teaching jobs or find a lover, having a large electronic footprint will be a problem in that aspect. This blog, my columns, my tweeting about health, hospice, and patient advocacy.. and of course, my patient stories -- they all feel so vulnerable to me.

I don't write about much of my private life here. Mostly I write about one set of things in my life. But it is enough. And actually, it is a big deal to me because I am an inherently private person. Those of you who have gotten to know me better have said to me, "I never knew how much of you you DON'T share until I found out how much more of you there is to know."

Of course, right? We are so much more than a pixilated identity. We are so so much more than any one thing we can share. And yet- it is hard to remember that. And more over, it is hard for me to remember that as much as I love other people and find them inherently beautiful for their stories and their sharing - I deserve the same.

I work for a great deal of emotional honesty and integration... though sometimes I fail and mess up, the only way I can continue the life I want is to seek out people who want the same life as me. People of integrity, people who are kind and honest, people who love and cherish each other and give back to the world.

Meanwhile- it is still my truth that I never feel as beautiful as the people I have met along my path. I feel vulnerable and out of context... and really -- I only hope someone can look at me and find me valuable and beautiful because of my scars.

Conversations About Medical Care

2011-06-26T23:30:00.000-07:00

I read a really moving blog post today by a cancer patient. In it she described never being given the details or choices of having a "non-treatment" offered to her. In her blog she said, "I walked in with bronchitis and came out with cancer." During her six long years of struggling with cancer, she pointed out that no doctor ever gave her the option of not treating it.

I saw a lovely conversation about "selling medicine" from a group of physicians, they were conflicted about profiting off certain treatments... and some were simply talking about using "gentle paternalism" to convince their patients to do what is in their better interest.

My response to these physicians is - if you are going to "sell medical treatments", even gently, then why aren't you selling the option NOT to get the treatment and the implications of not doing so?" Patients deserve to hear all their viable options. Especially when it comes to cancer treatment. Additionally, many times treatment for chronic diseases is based on the doctor's attitude and experience with it even more than it is to do with how good a treatment it is for a patient. (I will not even go down the being influenced or paid by Pharma road, as we all know this is an ethical issue.)

Every patient should know if their access to health resources is being influenced by religious institutions IF their treatments are being given there. And yes, many hospitals are religious based and there are few other university or state based options available. So this matters. And every patient deserves to know if and how much contributions are being made by a Pharmaceutical company (or other medical device company for a surgeon). We aren't taught to think that way. But it becomes a bigger deal when your treatment matters.

One breast cancer patient found out her breast cancer team was trying to wrap up a long term study and she simply fit one of the under-represented age groups in the study for one the medications they were examining. This made her doubt her treatment and she began to invest in other treatment options and seek second and third opinions elsewhere. Most patients wouldn't know how to do this. And most wouldn't know how to find out if their team of surgeons and oncologists was on a study and what medications they were intending to use. Ultimately she felt they were not intending to use a treatment plan in her better interest and today she is in full remission.

Doctors don't always tell you the full scope of what they are doing. And yes, many of them are champions and want the best for you. How to sort it all out without getting beat down?

Meanwhile, other stories exist where patients who have been pressured, even in their own "better interest" to have treatments - regret the treatments and blame the doctor later. Or they blame themselves for not having ALL the options. Or they simply feel like they weren't part of a team making decision. It is hard to be "empowered" or have "compliance" (which is a word I hate) or committed to one's health when someone is forcing you or even sheistering you into a treatment.

Very few physicians sit down with their patients and say, "If my wife were going through this, I would want her to have all the necessary facts. I would want her to have social support. I would want her to hear ideas that I even disagreed with so I could explain why they might not be a viable option for her." This takes time. And quite frankly, it takes team work. And - most patients don't respond well to "bad news."

It is hard to breathe in through unwanted news. To listen. To HEAR it and not forget it. No one teaches patients how to write it down. To have your doctor write it down and not just hand people a wad of shiny pamphlets or "go to this website it will explain everything."

We as patients and patient advocates, and the entire healthcare community need to be better willing and able to have conversations like this. Not just doctor to doctor or suspicious patient to patient. How to start the conversation? How to have real dialogue, trust, and relationship with our healthcare providers and doctors? How to have two way respect and value?

All Life is Loss

2011-06-20T20:52:00.000-07:00

I smiled when I read a friend's amusing outgoing message today, "When your dreams turn to dust, vacuum."

All life is loss. It is loss just as certain as it is growth and rebirth.

You can take the most boring stick and you can carve it into a work of art. And from that carving will fall wood dust and shavings. And surely you can scoop those up and use them as tinder to start a blazing fire.

When you stick your hand in the dirt it feels like nothing. Yet when you fertilize it and plant seeds in it and water it big beautiful blooms grow from it. Amazing cycles of life and regeneration and growth and death. ALWAYS DEATH and loss. We want to forget that part.

It is so easy to remember our journeys of friendship and joy. Yet we have a harder time enduring or talking about the parts of our journey that are a thousand barren nights of alone. These too happen. It is part of the process. The seasons of pain and birth and healing and growth and dying. I don't always 'get it' I don't always LIKE it. But it happens. It happens to me and you and every living being.

When Tibetan Buddhist creates a sand mandala it is a thing of exquisite beauty. And upon completion are ritually destroyed. Even the sand used to create the mandala is thrown back to nature.. "earth to earth, dust to dust"... the cycles of life continue. They symbolize impermanence.

Loss never feels like it will turn into anything good. It just doesn't. I once heard a voice say to me, "I was protecting you from a terrible career choice" after I was passed over for a promotion that I was FAR more capable of and the woman who replaced me was a woman who used to call me for advice and help. I quit soon after. But the slap in the face was indeed a career wake up for me. Was it loss? Was it dust? Or was it tinder to start the fire? (At the time, I promise you it did NOT feel like a good thing. Decades later, it was the shift the started a progression in time).

All life is loss.

We Are Good Enough

2011-06-13T16:57:00.000-07:00

As I listen to stories one thing I hear on a repeated loop is, "I'm not good enough." People might not SAY IT that way. Sometimes, actually, I have to listen through ears of love because it comes screaming out as anger anger anger. "Why don't you recognize me as a peer?" "My doctor doesn't give a shit." "My patients use me up." "No one appreciates me."

On and on and on and on. Really though - through it all, more than being undervalued or under appreciated at the core is the FEAR or the belief, the worry that "I'm not good enough."

In most cases, we work for approval. I'll do better. I'll earn your love with grades, with being funny, with applause, with publications, with promotions. When people respond to being criticized, I know in my heart they worry they aren't good enough. They haven't EARNED it yet.

The irony to this is it happens at all levels - from the most elite surgeons to the girl raped at 8. Oddly- the two have more in common than they will ever recognize. When I stand back and watch - the anger, the pain, the behavior of a meth addict (usually frequently to cover their own abusive past) or the heightened success of people - they all have the same stories to tell me. Fear, rejection, not enough, never enough. One crumbled from it, the other kept striving. Always always going for more more more but never FINDING enough approval to fill the hole inside. And you know what. There is never enough meth or food or promotions to fill the void of not being good enough.

There are not enough advanced degrees, or compliments, or hugs, or praise either. There isn't even enough prayer actually. Unless you believe there is somehow infinite mercy, and in that infinite mercy a healing space. And in THAT healing space we are all each others mirror.

And only then, can we see reflected each others true beauty and NOT each others ugly or failure or inabilities.

Today I read this sentence and it resonated with me: “When I forget who I am, I become what I might be” (Tao quoted by Paulo Coelho). I sat with it and realized that it is FINE to say this in a spiritual way- but it another to go through it. When we are losing pieces of our lives and holding on the log to not drown - it is an awful process. When we watch our loved ones die, or are losing our beloved house, or are sharing custody of our kids, or giving up on live goals or dreams. When we are LOSING OURSELVES, WATCHING OUR LIVES SHATTER, it does not feel like a spiritual process at all.

Then I read several blogs by people all who poured out more pain in the form of shared stories.
These stories are important.

Stories heal us. Katie, my hero, says "we write our way back to ourselves." And I agree. I also think when we share our stories with each other, and truly understand each other, and TRY to remember ourselves THROUGH our commonalities AND our realness, we collectively heal and allow each other to heal. We remember we are not only good enough, but we are truly beautiful. We are good.

We don't shame each other. We bear witness to our histories. We don't fear pain or joy. We don't run away from celebration or success. We sit with each other and remember brokenness, like wholeness has a place in life.

What Is Failure?

2011-06-06T15:11:00.000-07:00

I often feel like a failure compared to what I WANT and what I think I SHOULD be. I often struggle with living in the present moment. I struggle to play the cards I've been dealt.

Often, I fee like a failure. There - I said it. Yes - I realize that to someone dealing with what I've got measuring like this needs a new yardstick. I GET IT.

Measuring against the cultural normative is not only what we've been taught, but it is also what many of us judge ourself against. Marriage, house, jobs. What is success? Is it being kind? Is it living in integrity? Is it offering compassion to the world?

When I close my eyes and think about what I truly want - truly want - it isn't so easy. Many of the life options that other people have may or may not be mine in the future, but they are not mine now. I used to call this divine discontent. We can acknowledge it but if I dwell in it too long I will surely never have real joy.

Real joy is when my cat walks on my chest or I have a chai with friends or I laugh at a comedian who is preposterously funny. Real joy is editing someone's essay and seeing how beautiful and brilliant they are. Real joy is watching a friend's non-profit make it and make a difference in the world. Real joy isn't all about ME ME ME. But real joy isn't necessarily self-sacrificing either.

I'm allowed to have joy for myself inside.

I have said recently that I am grateful but not happy. It is true. These last few years have not been happy years. They have been hard for me. They have been a struggle. Right now I am WORKING. I am being dutiful. I am mastering many pieces of myself. But being happy is not one of them. I have been happy in my life - truly happy - but right now is not one of them. And perhaps this is why I have felt like such a failure.

And yet- if I am reaching towards a goal that will truly bless people, truly touch people, and truly make a difference, I am not a failure. I am not. I need to write this down now because I forget it so often. FEELING and BEING are two different things. And FEELING like a failure is merely an emotion of sadness at not having the life I want. But BEING a failure is giving up, giving in to my circumstances. And I haven't. I have NOT DONE THAT.

I need to remind myself. I need to let myself know that even measured against any yard stick at all - not having a family, or a husband, or children at this moment, I can feel a loss, but that doesn't make me a failure. It makes me HUMAN. Many people lose their families along the way and it makes them NO LESS. It makes us all beautifully human. And it is what connects us.

It is important for me to remember this and say it out loud and write it down. It is important for me to recognize that FEELINGS are beautiful and OK but they are not the TRUTH. They are merely part of what makes meaning in my life. I am doing my best. My goals in life include making a difference and contributing to the world. I *would* like to have some cultural normative things in life too. But that I don't right now doesn't diminish me or what I am doing. We are all on our journey.

Fatigue

2011-05-30T12:21:00.000-07:00

I live with fatigue. Every day of my life. Every minute. Every waking hour my body feels like it will crumble to dust. After a hot bath or during the summer it gets WORSE.

It was the ONLY nice thing about moving to Ohio.

I hate admitting to it. I hate succumbing to it. I hate telling a doctor my symptoms when they ask. It always feels like they will say, "mmm hrmmmm, depression." And even if it is or were, TREAT IT. TREAT IT. GET IT GONE!! HOLY LOVING MOTHER OF GOD, IF IT'S DEPRESSION, FILL MY FUCKING BODY WITH ANTIDEPRESSANTS AND MAKE THE CONSTANT GRINDING FATIGUE GO THE FUCK AWAY." Pain I have learned to live with. It is like a habit, you take longer. But fatigue is like a rope pulled too tight that eventually releases your boat into the ocean in hopes that another (better?) person will captain the boat for you.

Once, I had a psych consult. And I sat there and my normal, happy, "can do" attitude left me. Tears streamed down my face and I said, "Please, please diagnose me as insane. Give me any code you have. Tell me I'm fucked in my head. I don't want to live like this any more. Please. I'll accept anything you tell me so I don't have to DO THIS."

I saw his face soften. And he said, "You know as well as I do that crazy people don't think they're nuts. It is only the very sane that wish this insanity to be codified and rectified."

I knew then that NO HERO would ride up on a horse and save me. I knew in that moment that NO DOCTOR would ever fix the fatigue. And none ever has.

This is my battle. Occasionally, when it matters, to my endo or my rheum or my neurologist, I tell them I have fatigue. Sometimes overwhelming. Sometimes so much it feels as though the day weighs on me more than a leaden blanket. Nothing helps. So I wake up. I carry on. I do my work. I wish I had words - I sometimes lose them. I make a mark (xxxxx) in bold when I forget things and I come back for them. Because anything I have in my head now is still there. It's just missing a hyperlink. Brains are plastic and letting this get to me will just bring more stress.

To say that living like this is joyous or calming or pleasant would be A LIE. It feels like grief. Like the saddest day without the emotion. It feels like loss without the emotional pain.

The only thing that makes it better is knowing that hundreds and thousands of people out there feel this too. Some of them are my heroes. They have many diseases - some are diagnosed some are not yet. But they feel this exact fatigue I describe. I used to play sports and run and I would feel it as I would run. And I would run against it. And I would think, "Surely I will die if I run today." And yet, I never died. I would think, "I would rather have a heart attack in the middle of the court than give in to this tired feeling." BUT I NEVER HAD ONE. I NEVER DIED.

Somedays, I wish I did, but I haven't yet. So when people tell me about their fatigue, I BELIEVE THEM. And I get up, and I keep going as best I can. Because this is all we've got.

Trips That Change Us

2011-05-23T15:41:00.000-07:00

Claude Lévi-Strauss once discussed travel as fundamentally changing people. We cannot travel without coming into contact with people, cultures, and ideas that change us. (And perhaps us them.)

I took time off to travel and it changed me. It always does. I had to take time to really absorb the stories I heard and to accept some of the healing that others offered me. Some of the healing seeps in slower I think, than I might wish, but I'm still open to it.

In San Francisco I found bits and pieces of my former self. I saw friends I knew in Atlanta and stayed with them. We talked and laughed. I visited a shoe store I often visit and had a blast. I went to a club and engaged in social activities I'm good at and known for and well - it was very much "me." It reminded me who I am in a way.

Friends and I ate yummy fresh food and it really reminded me of beauty. I met people I've only talked to online, and that was joyous. I know their hearts, but meeting them in person was an even greater gift.

I got to share and be shared with. A friend met me and we had a lovely time. And they drove me to the airport. And off I went to Portland.

If San Francisco reminded me of "who I am" again, then the Portland trip was in a way a bigger blessing and a bigger heart pain. I only went there to see a friend, D, who's dad had recently died. My intensions were entirely full of love. I KNEW I would be tired and that I would want to go home. My own father had a big ceremony I wanted to be present for (and I actually missed by a day - which I feel terrible about).

Once there, my friend D had a bit of a psychotic break from reality. She was eating only cereal, had very little food in the fridge, didn't go with me to the grocery store, and went to bed at 9:30 (though she often talks on the phone to me at 11-midnight her time so I knew that she was feeling strange about having me there as a guest). I tried to be supportive but she said to me, "I feel lonely because my cat is sleeping with you." And later when a friend picked me up to take me to the falls and visit with me, she freaked out and said she was afraid for her safety and felt she was violated and felt she might be raped."

She threw me out of her house. I knew and I know that people who are on the edge don't think well. I tried to be calm and loving but she wouldn't listen to reason. My friend tried to talk to her but she hung up the phone. I simply packed my things and found friends to stay with to finish my trip. I was so sad.

The joy of the trip was that people surrounded me with love and support. They came from near and far and opened their homes and hearts to me. I am truly blessed in friends. I had a LOVELY time with people I didn't know very well. (I have more stories about the falls and views and consider them victories).

I know that people who are already walking a bit of a psychotic edge can break during pain or loss. She might not have realized it when she invited me to stay. She has stayed with me during Thanksgiving... we have taken several vacations together. However, I have never known her to be completely unstable like this. I know- I KNOW- this is not my fault. I was there only to support her and love her. I realize the only way to heal (myself) and to heal the situation is to simply love her. There is nothing else I can do for her. And so - I am sending her love.

She looks at life (at least right now) - through a fun house mirror of distortion. I have felt that way several times in my life when things weren't going well. I live life through a fairly agoraphobic haze... I get that holding her at fault or worse, myself, can do NO GAIN in the situation. Meanwhile, there is loss during this trip.

I found myself. I saw beauty in others. I saw children. I saw and heard stories and people. I laughed. I cried. I accepted generosity. I was loved. I heard "I love you, Melissa." more than I have in all my life. It was a trip of joy and healing. And it was a trip of pain and vulnerability. It held everything. It was life. Our lives are not ever perfect. Just like people. There are days where through no fault of our own, with pure intensions, people will throw us away. And after we grieve, we can choose love or we can choose pain and bitterness.

I have a VERY hard time being told "I love you." I have a very hard time being given to generously. And one of my friends who put me up for the night told me a story of when she was freshly married and young. Her much younger brother had given her a $20 dollar bill (a lot at the time). She felt very guilty and wanted to give it back. But her mother said to her, "You need to do him the honor of accepting his gift of generosity." And it made me tear up. SO many people were kind to me during my painful experience. So many people, "came to my rescue" - they surrounded me with love. They surrounded me with understanding. They handed me their hearts. They gave me their time. And I realized that THIS is what healing is about.

It is necessary to allow people into our lives, to love and touch each other. And to generously accept kindness.

As for the walk to the falls - it too held everything. Pain, joy, vulnerability, even some miracles.

It is time to heal.

Some trips change us. It is what travel was meant to do.

Tether My Camel

2011-05-09T21:08:00.000-07:00

I've been struggling a bit lately. But healing too. Many of us are. It is how it goes. Today my therapist said, "You aren't talking about your health as much and I can't tell why."

I simply said, "I left space in the darkness to be depressed without taking anti-depressants and it shifted and some of the deeper depression is gone. I also hit rock bottom (by Western/American standards) and I am here to meet my goals of finishing my writing and getting my health sorted. There is not much left for me to do but that. And, frankly, it is possible that the stupidly expensive medication I'm injecting myself with is working and I'm not having as many mood effects of the acromegaly."

She looked at me then told me a story of a friend/chronically ill pt with Parkinson's who was part of their work and who was vital to healing. He was never completely well, but they made space for him in their weekend groups. When he wasn't able to be, he slept and rested. He was first a healer and only secondly a patient.

I think she said this to give me a reminder that I am MORE than illness. Though illness touches my life in more ways than most. And though I am frequently able to pretend I am not sick at all, the price I pay is almost in dishonesty. Like not looking in the mirror.

A woman today was VENTING - literally venting because a lifestyle SHE CHOSE (vegan) for political reasons wasn't honored when she took her cousin for a birthday meal. Her cousin ordered meat and she was angry that she had to pay for it. Now she's insulted and feels that people should honor HER lifestyle if SHE is footing the bill. (She never discussed this with her cousin- which, you know - she probably could have done to avoid feeling insulted for giving a gift).

It has NEVER occurred to me to force people to eat gluten free because I MUST. Or to force people to watch me take my mediations or rest on my schedule because I MUST. I just do it. In fact, I have tried my hardest to SPARE people from it. (Sometimes I have failed from this- but mostly- I try hard to protect people - shield them from the realities of being chronically ill.) Occasionally I have asked for a shared load and when it is met, I have been triply grateful.

I'm learning about trust - and how to have a little more trust in people, but put my foot out and catch myself...

And - she shared the best ever idea with me, one I believe in greatly, "Trust in Allah but tether your camel." There are just SO many things we can count on, it is hard to get upset when it happens. I KNEW I would be miserable in Ohio (weather, missing friends, missing my LIFE). I knew it. I KNEW I was going to miss Atlanta like crazy. I also knew I would make a few friends here. I didn't know how much my health would get better or worse. And I didn't know I'd find good doctors here to compliment the one's I have in Atlanta. Some things you can count on. You can have all the "hope" you want but we don't order god around. We must still plan accordingly.

Frankly, I do that (tether my camel) by taking my meds, and resting, and getting exercise I can do for me and eating healthy healthful foods. And frankly, I do it by seeing a therapist and I'm doing it by seeing how I do on a trip and by doing my best to get out and experience life. I do it by finishing my writing and by allowing myself to FEEL fully.

And yes. Yes I miss having a normal life. Whatever "normal" means - yes I miss it. Yes I miss it. I haven't given up on possibilities but I am VERY VERY gunshy. I'm shy of dating. I'm shy of doing much of anything that involves long term planning. And frankly, even thinking of investing myself in work without the ability to take time off is ... what's the right word? frightening? hard to fathom?

I'm tired of WANTING. Of even imagining. I guess I've just plotting along for the last few years. Plod, plod, plod. Get through it, get through it, get through it. It is hard to imagine a day when I can do more than plot along again. I had them before. And when it went away, I just went into "let me make this meaningful" mode- so if I couldn't HAVE the life I WANTED, I could at least have A MEANINGFUL life.

Still hurts though.
And it is hard not to hope too much but have just enough and still keep up the plod plod plod to get through this.

2011-04-19T19:31:00.000-07:00

Many years ago I learned a lesson. I re-learned that lesson again today. Funny how some lessons need to be relearned.

It was a prayer group who also did energy work for each other. It was a very special time. Most of them young med students who dabbled in esoteric things on the side. It was all kept very hush hush because it was private, personal, and individual. I was invited because I have always been a fan of reaching out in love and I love (non-dogmatic/non-zealoty religious expressions of prayer and faith of all kinds). Also- energy work of any kind (tai-chi, reiki, pranic, yoga etc) are all forms of love. After the prayer meeting, we'd offer energy and healing to each other - the idea was each person was to work on another for 30 minutes then we'd switch. We went around the room touching each other with our own specific healing modality. I have always been involved in reiki. Others used their own jazz.

When it was my turn to receive healing the man who was using his hands to heal looked at me and instead of energy healing he sat down on the floor pulled me down with him and cradeled me for 30 minutes in his arms like a child. At the time I was in a sexless marriage (for insurance and safety)... but my body CRAVED touch. He didn't know. NO ONE KNEW. But God knew. This man's intuition knew.

In that moment the world opened and I was given EXACTLY what I needed. It refilled my entire core and I heard God make a promise to me: "Melissa- you will ALWAYS have what you need - I will always give you what you need."

That promise kept me through some of the most difficult times of my life. And while I talk neither of religion and prayer here nor of my PERSONAL healing practices like meditation and tai chi and yoga, they too sustain me.

Yesterday, as I sat with friends over a fire, I realize all this time in Ohio may well be God, holding me in an embrace. I'm still in it and haven't realized yet that I'm scooped up being taken care of getting what I NEED.

As I reflected on the kinds of men I love the most I realized - It is always similiar what I find the most attractive. They are the ones I call, "Volvos"... reliable, wear well over time, they take care of their family. They are "servants" to their friends and family, often to all. Even when it is frustrating or annoying they take care and love and are dutiful. They are usually religious or at least open to multiple world views. They always want family and believe in marriage or committed partnership in some way.

Some have awakened me the way spring rains and sun wake bulbs to poke through snow I'm coming out of my deep pain and deep hibernation. I'm starting to WANT to date again.

As I was praying about it I heard a voice resonating -
"What are you willing to give up to have this Melissa?"
I searched for the answer - pride? not the right answer... arrogance... no... FEAR!
I replied to God - "FEAR. I am willing to give up fear."
And I heard in reply something strange yet comforting. "Well chosen. It has served you well. And it is time for something new."

And instead of fear, I felt surrounded by a blanket of love.

I was amazed that God would tell me that my fear has served me. But these last years I have avoided dating. I have protected my heart. I have not looked for love and I have not had sex. I have been HEALING those parts of me. I felt no judgement. Fear served me temporarily. And now it is time for something new.

Who knows. But I do know that being the "lonely single woman" at places is worth it. I will not meet "my ideal" mate by staying home. I will not meet this person in locations that I'm not attracted to.

Tonight, doing improv rehearsal with people I know and love I was healed again. These are people who are attracted to the light as me. We live in love, we laugh, we see that even if we fuck up, we pull through it. We use everything, even the bad. We have opinions, we have LIFE.

By accepting that in Ohio, I may be sitting in God's embrace, I am giving myself space to heal... it is not FOREVER that I am in a situation I do not want. I have time to finish my writing. I am pulling my health together. And I'm looking with new eyes and more gratitude at the experiences I'm being granted this week. Not one agoraphobic moment. I've been too busy to fear. Too full of joy to worry.
L'chaim

Even Losing You, I Shan't Have Lied

2011-04-16T16:06:00.001-07:00

This last year was better by far. The last three were a doozy - in a way that kicked in all my teeth, dropped out my life, turned upside down, and literally changed ME from ME.

As I was packing for Atlanta I realized it's not MY city anymore. It's not MY home. In much the way that living here hasn't felt like HOME because I'm still healing and re-finding pieces of myself.

Two more friends just got promotions. Several more defended. And I realized I feel this way everytime someone has a baby, everytime someone celebrates another birthday of their children, everytime they go on an anniversary trip. Everytime I see a man watching his wife like she's the most beautiful thing on the planet - I feel HOPE for humanity and simultaneously like a failure for missing out on it. I am not part of this. I am in this liminal phase - disconnected, cast aside, unremembered, unMelissa'd. I made unwise choices. Instead of investing in 100% ME ME ME I invested in US US US - AND THOSE CARDS I GAMBLED ON DID NOT WIN. Or some might say- they won very well because I'm getting to deal back in in a whole new world, a new name, a new location. It might seem refreshing for some, but it hurts me deeply.

Meanwhile - the entire story of humanity is one of set backs and catching up, storms, crashing, insecurity, vulnerability, migration, procreating, learning who we are, and re-learning it again and again.

It isn't just survival but re-telling it and re-living it and re-expressing it and re-doing it till we get it right and better and make a tradition to celebrate it, sing about it, and hang it in our memories.

A beautiful friend who is a writer, told me, "we write our way back to ourselves." And I love that. In that way- I say we tell our story back to ourselves. And this is my story. I am preparing to visit a city, like a visitor, where once I loved and lived.

One Art by Elizabeth Bishop

The art of losing isn't hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster.

Lose something every day. Accept the fluster
of lost door keys, the hour badly spent.
The art of losing isn't hard to master.

Then practice losing farther, losing faster:
places, and names, and where it was you meant
to travel. None of these will bring disaster.

I lost my mother's watch. And look! my last, or
next-to-last, of three loved houses went.
The art of losing isn't hard to master.

I lost two cities, lovely ones. And, vaster,
some realms I owned, two rivers, a continent.
I miss them, but it wasn't a disaster.

--Even losing you (the joking voice, a gesture
I love) I shan't have lied. It's evident
the art of losing's not too hard to master
though it may look like (Write it!) like disaster.

Shrinking Into Me?

2011-04-11T15:47:00.000-07:00

Introspecting about what's going on in my life - and what's NOT going on in my life - and hearing someone tell it back to me from their perspective is very compelling.

She pointed out that I'm not just getting through a massive bout of illness, but that I've been bombarded with new diagnoses from multiple angles, moved to a state I DID NOT WANT TO BE, came through a horrific divorce from a man I wanted to stay married to, had to put on hold a profession I VERY much wanted to be in, and am financially squeezed to pay for all the past and current medical expenses.

All that AND from the acromegaly I put on sonic fuck tons of weight so much that I didn't even know my own body. And now during treatment I'm losing weight so fast I don't even have clothes to wear on any given day that actually FIT. How does one LOVE their body- I mean REALLY LOVE their body when on any given day it's not even WHO I am?

This body isn't ME. And yet I reside in it. People have poked and prodded and fucked with it, all in the name of "better health" my whole life. They have neglected it and blamed me for it as well - all because I either didn't have insurance OR because OF COURSE a woman gets fat and the first thing you want to say is "stop being a pig and hoovering entire pies." AND THAT MAKES ME ANGRY TOO.

And now that I'm losing this weight my tits are saggy and my stomach is stretched out and it just isn't curvy and roundy and pretty to me. I'm still shedding the weight- but I don't even know who I am. I look in the mirror and my moon face (from prednisone) is gone but what's left? I don't know it.

Meanwhile - I question my friendships. I worry that I haven't been a good enough friend. And more- I worry that what I THOUGHT were good friends weren't. I worry that who and what I have loved were more fragile than I thought. Because that is how it goes again and again.

She pointed out the teenage years when young people are still formulating "who I am." And creating a sense of identity for themselves... And I HATE IT. I hate it. I hate that it is me. WHO WANTS TO BE THAT? Who wants to be creating a sense of identity when by now we should have our identities. We should KNOW who we are. We have spent our lives creating labels and norms for ourselves - making meanings and making sense of our world.

One guy (I adore him) asked me "who are you?" And I replied, "I am a woman who loves." Because I quite simply couldn't tell him. I have no idea. Do I reply, "I live in a liminal phase that I didn't welcome, dealing with illness that is getting better? Do I reply, "I'm healing from a divorce that my ex is already over and is already remarried to a new chick?" Do I reply, "I'm not supposed to be fat but I had a disease that created it - THIS ISN'T ME?" All of those sound like excuses and justifications. I just didn't KNOW what to say.

WHO I am has shifted so dramatically - as it would for ANYONE regardless of illness. But throwing this onto it has spun me so urgently I suppose there is no landing. I suppose that finishing my writing, finding a job I love, and moving and setting down some "concrete this is where I live" roots might do it. Rootedness and gardens and houses and living space and community has always been how people have created a sense of identity. We've created a family- either with our flesh and blood or through one of choice.

Being uprooted from much of what I knew and identified with didn't help. And right now- shifting meanings and allowing and developing who I am while still living in love and kindness is HARD. It's the hardest thing I've ever done. And frankly- I don't trust all the time.

Sometimes people have said they will pray for me. And I want them to. I want them to pray hard. Occasionally I get a notion that I will visit a shul or go to a quaker space/church... and then I don't. I just don't. I'm probably denying myself some sort of familiar concrete space by not going though... because when we create community with others, we HAVE that. And I have denied myself long enough. I just hedge against being "the single lonely woman" - and I'm NOT just one religion... and that perturbs me.

Alas- no one said this life would be easy. And it hasn't been. But I have found rewards. I have found great joy in much of my life. And as much as I have found pain and suffering, I have also found truly meaningful possibilities. Perhaps denying myself a community is not a good thing and I should explore it when I return from my trips.

And lastly- I'm terrified, absolutely terrified of going to Atlanta, San Fran, and Portland over the coming weeks. Nothing terrifies me more. But it is time. I will be staying with friends. I have doctors appointments. I can rest when I need to rest. And it is TIME to travel, visit, and move out of my shell. I generally get agoraphobic - and when I do - the best thing in the world is to face the fear and do it anyway. NO ONE can say I lived a life defined by my fears or my illness. I BOUGHT MY TICKETS YESTERDAY.

Risk and Remission

2011-04-07T16:10:00.001-07:00

Going into remission always feels strange. Yes, my SED rates are still high and yes I still have high levels of fatigue because of the enormous amounts of 1) meds I take and 2) muscle loss from being ill for so long. But being in remission itself is both good and odd.

I'm GRATEFUL FOR IT. I can do the things I've LONGED to do. And yet- it is always like holding a breath. In the past I've counted too much on STAYING WELL. I've had more bravado. I've forgotten that I may get sick again. I've stopped going to my rheum or my neuro. And sometimes I've even gone AMA off some of my meds (for money or because I felt better). And in every case- I had a flare. Sometimes it took several years.

I take EXCELLENT care of my health. Unlike most "typical" Americans, I cannot eat fast food because I have celiac - so I simply don't go to such places. I generally don't eat out either- and when I do- I pick and choose wisely. When I can- I get daily exercise. So when I am healthy- I am THE PICTURE of health. Most of the time I'm so healthy except for my meds, I even forget that illness has been part of my life.

Part of me wants to forget forever. Part of me wants to walk away from chronic health issues. Not because they are laborious - because they aren't really - once you learn to deal with them, they just are routine. But because the razors edge never stops being steep. When a flare comes back - it comes back harder the next time. It is never a good time to get sick.

I'm always in the middle of a flourishing career, a lovely relationship, friendships - MY HAPPY FUCKING LIFE. There is NEVER a good time to be sick. There is NEVER a good time to deal with it. I've had life long friends who rolled with me. But mostly- I just go under ground, suck it up, deal with it, and then come back up for air and life has gone on without me.

No matter how loved we are- life never stops when we hit the ground to heal. And so I have my "emotionally healthy sick friends" and my "healthy friends" and my "comedy friends" and my "creative poet friends" and my "knitting friends", and my "xyx" friends- I have friends of all stripes all over the world. I reach out for them only because in general - when I get sick, I don't feel like reaching out much. So I return my reaching when I'm feeling better.

Yes. I live in fear of the flare. Yes I live in fear of living life like this. But THIS is how I've rolled from the time I can remember. Cycles of health and vibrance and then times when I am unwell again. I know no other way than to grab on to life and celebrate it when I am better. I must write now, live now, work now, CELEBRATE NOW.

These are the cards I've been dealt. And quite frankly, I've won a few rounds with these cards.

Sure I want what most people want - the picket fence, the loving life partner, the emotional security, the children, the job, the quality of life, the garden. It's the life I'd pick again and again if given a choice. But I don't have that now, so I must continue the path I do have - which is building what I've got with gratitude. AND LIVING.

I'm navigating my razors edge with fewer backup plans. Because I think God wants us to live the life we've got. I'm willing to do the work. Yet, I'm the first to admit, I've never had THE TRUST that life would work out. I've been wrong.

I Have A Big Fat Friend

2011-03-28T20:52:00.000-07:00

One of my best friends is fat. She's really fat. I cannot guess her weight but I know that she cannot buy anything in the mall or standard women's sizing. She’s “point and laugh fat.” She was and is one of the most supportive people to me through all of my illnesses and through my divorce. We’ve been friends for a really long time. Decades.

Her life has been a constant battle of not having as many friends or lovers BECAUSE of her weight. She's very highly educated, smart, creative, and a genuinely good person. She takes good care of her animals and from her photographs I can tell that she's been a very fat person since she was a very little girl.

She's the kind of fat that gets stared at when we walk into stores. But when I hang out with her, all I see is HER. I don't NOTICE her weight because I LOVE HER. But she notices people staring at her and when she points it out I look and I see it too. People mock, they make fat faces, and yes - they are completely cruel.

As a "norm breaking project" once, one of my students once made a video with her boyfriend. In it her straight gender-norm boyfriend dressed as a woman to show the responses people give to people who are DIFFERENT in our society. They had three friends at the mall use professional cameras from the school’s AV equipment and show faces and responses far away. No one knew they were being recorded.

He did nothing but walk to an Orange Julius, buy a drink the way anyone would, bring it out of his "purse" and pay for it. He then sat down and drank it in the mall the way he would anytime. He did nothing, “swishy” or silly or odd. In fact, he was very masculine behaving because he wasn’t actually FEELING like a woman he was just dressed as one.

The camera showed people mocking, staring, laughing. People came up behind him and laughed and pointed. It was STUNNING. Everytime a professor, doctor, nurse, teacher, coach, or "professional" does the same to ANYONE who is different they are essentially reproducing hatred back into our cultural fabric. Refusing to treat trans, or mocking fatties, all of it – ALL OF IT is further justifying bullying, hazing, and all forms of injustice and inequalities at "difference."

As for my fat friend, there has never been a time when I was with her that she wasn't giving back to people in such a lovely way with phone calls, genuine love, and kindness. Her body is weird. The way her mother and father treated her (as the embarrassing fattie of the family) an outsider and all of society has sends a very clear message that this woman with two Master's degrees that she is WORTHLESS and should be mocked and hurt for her difference.

It doesn't matter how much good she has done for me or the world. It doesn't matter even if she saved the world from disaster, I'm sure people would still line up to mock her and cameras would catch it.

Receiving with Grace

2011-03-24T23:24:00.001-07:00

Just tonight I was talking with a friend who is going through a divorce after 25 years. She was talking about Thanksgiving and how this was her FIRST holiday ever not cooking or being the one doing for others. Her story hurt my heart. How I know that story. How painful to have everything in our lives change. And worse- to watch the world continue around us - seemingly happy and carefree (the truth is - many people are NOT happy, but when we're in our pain, everyone seems to look happy when they are engaging in rituals we no longer have).

She talked of going to her neighbor's and being asked, "Are you OK?" And replying honestly, "No, I'm not, this is my first Thanksgiving after 25 years of being the one cooking." And the neighbor's mother replied, "Well this is time for YOU to receive. And more than that, it is time for you to receive graciously."

These words profoundly affected me. Repeatedly in my life I have felt GUILT when I have needed more care. And to be honest - I have been stoic to a fault. In fact, I have often HIDDEN my illnesses from friends and I have NOT talked about what was happening. I have entered every program, every comedy troupe, every workplace and NOT discussed any health implications. For me, I just "sucked it up." How often have I NOT graciously accepted the help, love, or caring from people who MIGHT have given it to me because I feared or knew they would run away?

And reciprocally - yes- MANY of my friends have gone away. YES THEY HAVE. Many of them have found out about my illnesses or perhaps I acted like a cranky shit - (yes -I have my days- and it is FAR EASIER to sound pleasant on a blog post than to bring yourself a saint every day especially when you're sick and in pain or post op).

Meanwhile - I have always thought myself hard to love, hard to deal with - and I have always EXPECTED people to leave me. But I have always put up with others. I have always dealt with other people's difficulties, their pain, their illnesses, and their problems. I have been a good friend. And so - perhaps BECAUSE of so many shitty people, I have (somewhat like a wounded animal) come to expect the worst of people - even online - I simply don't share much - not from the depths of my heart.

Even when my cat died and I was broken hearted - I quite simply drew in and mourned and mourned. I watched other people mourn OPENLY- but I hadn't the heart to express my pain out loud for the world. I just didn't think I could - not the way I was REALLY FEELING.

Where is the sweet spot? Who knows?

I am spending time right now actively working on the few carbon based friendships I have. Listening, talking, sharing. I am truly working on being honest and vulnerable and supporting. NOW AND HERE is what we have. Secondly comes my friends who are scattered wide and far- those I stay in contact with through phone, e-mail, IM, and other electronic means. We have many ways to communicate and talk. But THESE relationships matter. And it is important to trust them.

And - frankly- if I cannot trust them, I am weeding them out. It is important for me- powerfully so - to love, communicate, trust, and support. Life is full of unnecessary pain. There is NO reason to ad to it.

I have always SAID and believed that some of us are here to learn compassion - TRUE compassion and service to those of us who are ill or unable to care for ourselves. And I believe we all get our turn - from infancy to being ill to our death beds at these vulnerable states. The harder part for me is actually translating this - compassionate acts and accepting with grace into my OWN LIFE.

And that is why, perhaps, I am here. I am a human, having a human experience. I am not a guru or a saint. I fuck up all the time. And I'm TRYING - every day - to do it better. For those who have taken care of me or allowed ME to care for them - it feels right. I'm trying to stop THINKING about it and start DOING it. Getting out of my head and into reality is my job.

Expert Advice

2011-03-21T00:49:00.000-07:00

I used to be annoyed that people needed "experts" - or so called experts to give them advice. I wanted people to EDUCATE and EMPOWER themselves. Then I realized how much I appreciate help when I get stuck knitting. I rarely know what fibers work the best at what weight and which needles do better and I CERTAINLY do better taking lessons at certain technical skills in order to perfect them. I do better when I am SHOWN how then DO IT HANDS ON rather than TOLD how to do it or simply read it.

Meanwhile - I have had several ex's who came home with products for their hair that they were sold by their hair stylist. And I remember saying, "do you even USE product in your hair?" Or another time, when one ex switched from a really good shampoo to a fairly crappy shampoo because his barber recommended it. People like to be told what to do. We feel like being guided.

I'm highly educated, and all along the way, I've been well read, gaining my education, and I've been well respected. I would teach classes or be in jobs with people who would take me at my word. People would make high stakes decisions based on my word. And I would come home and have partners who wouldn't buy groceries without checking a rating site over MY OPINION. I realize this may have been a scam in order to get me to grocery shop alone - but I also realize they didn't TRUST my opinion or my abilities.

I was "just a wife." I was never an "expert" to them. Experts spit out charts, they don't cook or clean or make love. And also- it doesn't take a DEGREE but EXPERIENCE to garner expertise in many areas. That is why women have been so good, historically at investing money. They KNOW products that are good and will invest in the stock market in products and companies THEY LIKE. And generally- those stocks are steady and make reasonable gains. Some might snort at that- but in this shit-tastic market- THAT IS A GREAT STRATEGY.

Historically- passing on sound advice like "never use manmade fabric with a plastic one because it will wear out" is SOUND ADVICE. We have handmade quilts today that are STILL LASTING and still around even though they were washed, dried, used for DECADES AND DECADES, hung to dry in the sun, pooped on, vomited on, made love on, given birth on- you name it. Why? Because women passed on their advice about how to make a strong quilt and the advice was followed through upon. It was passed down and each woman could become and expert over time. No one held a "degree" in quilt making but the knowledge was there if it was sought and learned over time.

NOW - "women's work" is still dismissed and demeaned - but guess what- you cannot BUY a handmade quilt. You cannot afford one commissioned by a handcrafter. You cannot name a price high enough. They'll only do it for their families. Most of them wouldn't sell you one- but a good one will allow you to buy the fabric for them and they might teach you how to hand quilt next to them so you can do it yourself. They might roll their eyes if you insist on using a machine too. It is knowledge passed on. It is "expertise" passed on.

So why then - do we feel better with certifications? When KV Pharmaceuticals priced a once $10 drug at $1500 everyone hit the roof. But isn't that what we do when we take formally apprenticed training and "systemize" it and charge for it. Before - scholars were there - hanging out- and the students who wanted to learn came to them. You hung out talking and learning. When you were done - you went home. Doctors taught students this way, midwives taught the same. Chemists taught the same. And YES- it does need a degree of formalization for life saving purposes. But do we NEED "experts" with the big dollar on it or are we all just blowing by the equivalent of KV Pharm all over life and being fucked by them at the same time.

Experts are experts are experts. Certifications don't keep people safe. And plenty of doctors are quacks. And there are PLENTY of shitty professionals all over the place. And I as a patient have done more work on the relationship end of most of my healthcare than the other way around.

And in the classroom - my students wouldn't flock to me if they were getting the kind of quality attention and consistency they deserved. Education is broken and fucking everyone over - and charging them for the privilege. We're all getting fucked for what? To get to call our selves "expert" - and to point and call everyone else who have lived a life of experience not one?

In a clinical lab a woman saw a certain set of lymphs on a swab but her boss kept calling them something else. The woman had more experience than her boss, but the boss had a big degree. The woman caved and wrote what her boss said but in parentheses put that she also saw detected a number of lymph cells. The boss was smoking angry and called for a recount. The woman was terribly upset and felt horrible, thinking she should have stood up for herself. But in reality, she had been TAUGHT to defer to "experts" and to consider herself subservient to both her boss AND her lack of a degree, though she herself was an excellent hematologist. DEGREES DO NOT MAKE EXPERTS. Expertise can be learned and taught. And experts need to stay on top of their game as changes happen or they fall behind.

Consider the computer and people who refused to use it.

Hurting my Feelings, Healing my Heart

2011-03-14T22:23:00.000-07:00

It was interesting. I talked to @chemo_babe about how discussing her remission from cancer shuts people down. They don't even talk to her in her running group. Now to say, "congrats you're over it," or, "I'm sorry you went through it." Not to share similar stories. Nothing.

And then - I shared how I had something SIMILAR happen to me. IN FLESH AND BLOOD. I met someone - a friend- who got to know me. ME. Talked to me, shared. Etc. And I put off discussing health, not because I was hiding it- but because it is NOT the only thing in my identity. But I also knew that at some point it does get discussed. Because health IS a central issue in my life. It IS part of my identity. It is part of me and always will be.

We talked about their nursing school and I talked about SOME of my health experiences and how and why I know so much. And then THEY STOPPED FUCKING TALKING TO ME. No - nothing happened. Before they were all- bounce bounce- rattling my cages to hang out - to get to know me -to talk to me- to be in my life. And - as is my way- when one on one- I take things somewhat slow. Then suddenly- after I shared the health stuff- poof- gone.

YES- IT HAPPENS. Yes it has happened to me before. And YES IT CUTS LIKE A KNIFE. It is why I share early on and it is why I don't make a big fuss or talk about it a great deal. It is why I tend to shield people from it. I don't use e-mail addresses linked to my twitter feed or my blog. I don't want people to make snap judgments and abandon me. And yet it has happened again and again and again - in friendships, in romance, and even with family.

I don't know any way around it except to say that illness scares people. They don't want to deal with past memories or their own mortality or even what they might be going through. I've dealt with friends saying to me, "I don't want to watch you die." I've dealt with the silent abandon like this. I know in my heart IT ISN'T ME. But it ALWAYS FEELS LIKE ME. It does. It feels like a personal flaw to be ill and be left because I TRY SO HARD TO BE GOOD TO BE BETTER EVERY DAY- to think the best of people - to do good - to have pure heart. I TRY SO HARD to be better than I was - to give back. AND YES I FUCK UP. EVERY FUCKING DAY. I fuck up so much it's not even funny.

But not enough to get left for it. Abandonment is a running theme in many of our lives. And I don't know any other thing to do than simply explore it. Because to give into it and fear it and STOP cultivating relationships will only hurt me more. And yet - IT IS PAINFUL EVERY SINGLE TIME.

And I do often run away from love. I really do. Especially because it frequently feels cloying or false or needy or pressing. And really- I'm just afraid of being loved. I get it. I get it. I don't know the solution to that either. I'm so afraid of being loved right now that I have begun giving up on everything.

And then - my phone rang. It was an old boyfriend. Not a serious one - but a fun sweet one. He helped me move out of my ex's house. The kind you keep friends with for life. Hell - I think I'm friends with all my ex's - except the one's I married.

He talked to me forever on the phone. He reminded me just how much beauty I had and how much fun we had. He even remembered our first date. (I didn't). He made me laugh - bc he pursued me like crazy- and I dissed him - which is what I do to EVERY GUY. I just don't believe people when they say they want to date. And he reminded me how he would text me or call me for MONTHS AND MONTHS AND MONTHS till I gave in and FINALLY had a date. I laughed. Dating him was fun. It was the way dating should go.

He pointed out how there really isn't any science to dating or friendship or relationships - sometimes they just click. And he pointed out that I was sick the whole time we dated - and it was never a big deal. I never made an issue of it and neither did he. He also pointed out that if someone cannot handle it - friends or family or dating - THEY ARE NOT THE RIGHT FIT.

It is so odd that it took a phone call from a guy who was genuinely nice to me. Who clearly still likes me and is still in my life - to make me realize and believe that I'M NOT TO BLAME. That there is nothing broken about me. Tonight - he healed me. I needed him - and somehow the world shifted and provided it for me.

We were never unkind or needlessly cruel to each other. He just went away to school. It's what happens sometime. Life just happens. And sometimes they pick up the phone and remind you that you're worth loving - when you feel completely unlovable and yucky and broken because you're sick.

Male OBGYN

2011-03-11T17:28:00.000-08:00

OK I will tell you something that you can either judge me for or understand or find lovely in a healing way. I will also admit that THIS is why we are all part of the solution. ALL OF US are constantly healing each other.

The first time I ever went to a gyn it was a man - and he was a giant jerk. As I was walking back to the room he came out of the examination room next to mine and he threw a used speculum on the nursing station and yelled, "this woman has yeast" in a disgusted voice. (He'd been examining it under a microscope). In those days we couldn't buy OTC medication for yeast infections and HELLO diflucan.

The nurses said NOTHING. Other patients looked away, mortified. I had never been to anyone but a DO/pediatrician before so I didn't know what to expect. Perhaps this is how grown up women got treated? Meanwhile - the nurses exchanged looks and swallowed their words.

I waited anxiously in the room whilst a nurse came in and then HE came in. GAH! Of all the chances. He was even rude to his wife on the phone because she called and he took it and slammed down the receiver on HER. This was NOT a pleasant man. Then he said, "My wife is pregnant and rolled his eyes." THAT should have clued me in.

Meanwhile - I explained I had lupus and had gotten yeast before in my throat and vaginally and I simply needed something to treat it. And he accused me of being sexually active. I. WAS. NOT. Now- if I was, I would have told him. And later on I would become so. But at the time - NOTHING could have been further from the truth. He was examining me and left a speculum in me while he left the room to get something. It was excruciating. I was crying when he returned. And of COURSE he was NOT compassionate or kind.

Then I'm sure he went out and threw my yeasty speculum on the counter. And he came back in and told me there was no way I could have that much yeast without being sexually active. AGAIN. And he insisted on doing a pap and std check. But I refused. I WAS NOT GOING TO. He refused to write the Rx without it. So I caved because I was so uncomfortable. OF COURSE they came back negative. HOW ELSE could they come back?

I got my Rx for yeastie beasties and PROMISED I WOULD NEVER EVER EVER EVER go to an OBGYN AGAIN. EVER.

And then I left for uni and discovered in a larger city there were NP's who were WOMEN. And from then on I ONLY went to women and exclusively NP's. And of course, when I became sexually active, I NEEDED regular checks etc. It was a breeze and I had only good experiences.

UNTIL I came home. And I ran into a woman who takes new patients in my city and my insurance and who got me in for an emergency issue... and of course, SHE was a bitch. She was brusque and didn't talk to me nicely. And she did things in a fast manner that HURT (even though by now gyn exams are a snap- I was SHOCKED that someone could make them hurt).

So-- the end of this story is - I had two people mention this man they see. I kept saying NO. NO NO NO. Then, I finally went to him for my annual. One of my friends had actually spoken to him and he REMEMBERED me. When I got in everyone was lovely. And he met me in his office before the exam. And fully clothed we talked about what was going on. Then we moved to the exam room.

I disrobed from the waist down. Did the stirrups. Blah blah blah. And he came in and was SO congenial and pleasant. He COMPLETELY rocked it. He talked to me the entire time, pleasantly - like his head wouldn't explode if he actually shared a story with me. He asked what I was working on. I FORGOT myself because it is SO uncommon to have someone's hands inside your twat and be asked about work. But I told him. And he chatted about a few similar ideas - WHILE HE WORKED.

WOW!

Then he was done. And he shook my hand and looked in my eyes and smiled and said, "I am so glad we got to meet today." *faints*

He completely healed me of EVERY bad male doctor visit I have ever had. And I realized that we are all in this together. We are ALL able to help each other and heal each other through our actions. And though I've had other male doctors since then - I've NEVER let a male doctor touch me like that since my first negative experience.

So- now I have a new male obgyn. He came from the recommendation of two women whom I respect. And I'm grateful that I have a new perspective.

When a Relationship With Your Doctor Shifts

2011-03-11T14:22:00.000-08:00

I had an interesting a profoundly different experience at my primary doc yesterday. I'd say it was one of the more fulfilling experience I've had up here. I'd also say it was because I didn't have illness NEEDS - it was because of that jacked rheum apt where I had to go get prescriptions from her. So seeing someone when I'm NOT sick is MUCH more calm and left me open to seeing things from her perspective.

I also had a brief twitter convo with @BurbDoc the other day where he discussed the notion that some docs are genuinely comforted by their patients who don't "suck at life." And rather than RESENTING this I wondered what it would take to reverse positions and just be calm for a change. (The last few interactions were a mix of adversarial - but it wasn't her vs me rather than other stupidity like a physical therapist who I didn't get along with. I'm NOT a difficult patient nor am I disrespectful to staff or receptionists. But sometimes personalities clash- and we CLASHED. (I cannot call them wrong so much as it was a PERSONALITY DIFFERENCE. And nothing about it warranted them going to my doctor). Again - the way she handled it was very abrasive to me. Rather than assume it had two sides, she YELLED AT ME when I was VERY SICK. And I had to defend myself and point out her errors. She then backed down but it both hurt my feelings and it interrupted the flow of our relationship when we didn't even know each other.

However, yesterday- I realized that we are all prone to error in judgment. And I went in with a truly open perspective. And when I discussed what happened at the rheum appointment (quickly), she realized I WAS ON HER SIDE. And she said, "well, shit rolls down hill." And I realized that we had made a relationship. She recognized that I understood how the culture works and how the rheum should have picked up a phone to consult with HER if he wanted HER to prescribe a medication on his behalf. Meanwhile - we discussed how and why I took it and how it was originally a neurological medication and my rheum took it over. And she was FINE with it. And she also looked over my labs which I brought in and we discussed the potassium.

She actually recommended a higher amount since I teeter so low, and I said, FINE. I realize I'll just pee out any excess. And since this new medication I'm on gives me GI distress - I might as well NOT go low on the K. So - I felt her genuinely trying to help me. I also recognized that I have lots of "specialists" - which sort of removes some of the "doctoring" from her arena. And maybe that makes it no fun for her. I mean - in this case - it really does only leave me there for her when I'm urgently ill or when I have a "problem" and not for the things that most people go in for. However, this is how it rolls. And I DOUBT she has many patients like me.

I took the time to go over a few of my new diagnoses. And I explained quickly how common some of the interactions were and the relationships were - like lupus patients are 3 times more likely to have this. And this medication has a strong black box warning so we need to watch for x. And she wrote it down. I know she'll do her own homework, but I also know she didn't KNOW IT. And I also know she understands that *I* like to be cared for and that I have a great deal of trust in the doctors and specialists I TRUST. I also like to know what's going on in my health and I don't have all the answers either.

No one does. Even doctors need specialists. Even the most learned among us go to doctors and therapists to learn more about treatments for what we need. And when I sat there and quietly outlined what was happening and how and why I had come to my decisions and how and why I hoped to make it work in the future, she seemed to understand. Some of it is like a game of risk. I hope that by making SOME medical decisions, I can keep worse medical issues from occurring.

Meanwhile- I FELT that we both understood each other for the first time. And it means that I will be staying with her. And I'm grateful for some of the chats I've had with people that help me understand a wider array of perspectives. Truly giving HER time to trust ME seemed frustrating because I was missing my old pcp. But it was worth it.

A Mother's Blessing

2011-03-05T21:24:00.000-08:00

A woman today I speak with told me her children were being pains and she hoped they got children just like them. I replied, "ahh, the mother's blessing." And then I cried.

My mother used to say to me, "I don't want you to have a daughter like you - I want you to have TWO like you."

I have miscarried my children thanks to Lupus. The meds I take have some hefty blackbox warnings and my health is such I will probably never have biological children. I am unsure if I will ever adopt my own unless my health improves. And though I get beautiful offers of marriage for healthcare purposes, they are from amazing honorable men - none of whom want a FAMILY with me- they are simply falling on their sword to take care of a woman with health needs. They don't see me as a viable romantic interest. I think I would be an ok mother. And I have always longed for the stability of a family - the picket fence kind - even if others scoff at it. I HAVE ALWAYS WANTED IT.

I would LOVE to be blessed with my own. I've turned out ok. I'll take TWO OF ME.

Please god?

Good Patients Deserve Good Doctors

2011-03-01T18:54:00.000-08:00

I had the specialists appointment from hell today. Except maybe not. Maybe this is just par for the course.

He ordered labs and when I asked which one's he was ordering he looked at me indignantly and said, "specialized lupus lab workups" - like I'm a moron and don't know wtf is up. I said, "I've recently had labwork only a week ago by the referring rheum and she might have taken these tests - my insurance won't pay for these labs. They will also be in this chart I've handed you. He didn't open it. I said, "Looking is free." as a joke. He didn't smile.

I tried to tell him I was not on cell-cept right now for a particular reason- but he said, "If we don't get through MY questions I cannot get through this apt. Then he said, "I don't treat fibromyalgia." And I said, "Well that's good, since I don't have it." And he looked at me. I tried to explain that the medication I'm on was for neurolological reasons but he continued. "You'll need to see your family doctor for the rest of these medications."

And I said, "My rheumatogist handled this in the past and if you're not going to I'd at least like to know WHY and if my primary doc is supposed to handle it I'm sure SHE'D like to know why its going to be her job to continue prescribing medication she didn't put me on and was originally prescribed for Lupus SLE. He didn't answer.

Then he said, "I will need to speak to your endo about this." He pointed to another medication I'm on. I gave him a list of every one of my specialists for a reason. I LIKE WHEN MY DOCTORS TALK TO EACH OTHER. I'M NOT HIDING ANYTHING.

Then he said, "I'm not going to continue keeping you on potassium." I said, "Well if you don't I'll go low." Then he said he'd refer me to a nephrologist. Which is fine. But in the meantime - WHY THE FUCK CAN'T HE JUST RX SOME K TILL WE GET TO THE BOTTOM OF IT??? It's not like I'm going to sell the shit on the street? It's not that hard to reorder it. Now I'll have to have my rheum or neuro do it from ATL. My family doctor won't do it. You know why- bc she likes to treat strep and ear infections.

Then he said, "I don't prescribe opiate drugs." And I said, "My last rheum did and I signed a contract with them. But if you don't, that is fine. I'm not in pain right now where I need it- but I DO sometimes require opiate meds and LIKE to have a pain management plan in place for those times." Wait - guess what he said. "GO TO THE ER IF YOU'RE IN THAT MUCH PAIN."

I said, "I am building a relationship with you BECAUSE I AVOID the ER - why would I go to one if I have insurance and means to avoid one? ER docs HATE THAT." Then he said, "Then see your family doctor, I only want to see you during your scheduled appointment times." And of course. I said, "What if I have a flare? "Go to the ER if you flare."

I KID YOU NOT. That is such bullshit. I could fly to ATL and see my RHEUM before I could get in to see him. FUCK HIM.

Anyway- the whole point is - I'm leaving with three more specialists than I went in with and he re-ordered labs I just had a week ago and didn't even consult. And he NEVER LISTENED to WHY I went off the medications I was on a few months ago. HE DIDN'T WANT TO HEAR IT.

This is why I go to private doctors. But even then - it doesn't mean I'll get quality care. It takes time to trust doctors.

Doctors are always bitching about how shitty their patients are. But I have spent my LIFE learning to be a good patient, take care of my health and KNOW what docs need to build relationships and take care of me. But I can't do it if a doctor isn't doing THEIR PART. And this is the soul suck. Because now I will take several more months waiting on the razors edge to find a decent rheum, going to ATL to visit my old doc, AND hopefully getting a referral to a rheum here who CAN and WILL care for me if I need her urgently.

I'm a good patient. I deserve a good doctor.

Afraid of the New Doctor

2011-02-26T16:02:00.000-08:00

Do you ever get scared to go to a new doctor? I do. All the time. I love my old specialists- my tried true docs. I spent 14 years building relationships with them and figuring out how to work out with each of them AND get them to communicate WITH EACH OTHER. I fly back to a different state to keep some of them them in fact. I miss my nurses MORE even (but dont tell my docs that).

Here in a different state I've started going to new docs and new relationships - but even now I'm seeing new specialists. And I'm scared. I'm on new meds and I'm going off olds ones. I'm possibly doing clin trials - and frankly I'm going to the University here for something and I FUCKING HATE UNIVERSITIES bc they simply cannot have good relationships the way a private practice can. I don't CARE if they are better doctors - There is NO WAY they look at me and SEE ME. They look at me and see a fucking jacked up patient with lists and lists of medicines. AND I FUCKING HATE IT. And all the worst practices in the world HAVE ALWAYS BEEN DONE AT A UNIVERSITY MEDICAL SETTING. I'm not telling people not to go there. And I'm sure some people will claim their lives have been saved there. And I'm sure some people will claim the best treatment. But for me- I LIKE PRIVTE DOCS bc I like to be seen as A HUMAN, not a fucking PROBLEM.

My latest issue is - I haven't had an echo in several years. And I am seeing a new specialist. My old GI doc is in Atlanta and she wanted me to see someone she recommended - someone she liked as an attending. But I'm afraid to go to him too. I pick people based on them, their staff, how they treat me... but NOW I have to go through the whole thing. The process of getting new specialists. I HATE THIS.

I'm high needs - even if I'm not an EMOTIONALLY NEEDY PATIENT. I am a high needs patient. I TRY NOT TO BE. But everything people hate about patients - I am. I have LISTS of meds (some I take daily and others I take prn). I have never had a "family practice" doctor that I just went to regularly for anything more than simple infections etc BECAUSE my shit is so complicated. I can tell they haven't heard of some of my diseases since med school. Or worse, my primary doc said to me, "I saw someone die of that in residency" when she was reading my chart. THANKS. THANKS SO FUCKING MUCH. I GET IT. I FUCKING GET IT. I KNOW SHIT CAN BLOW UP. I'll only go to her for infections and referrals. Thanks. I won't overwhelm her with REAL NEEDS.

Anyway- my primary docs often contradict what my specialist says. And even my specialists contradict each other. So I've worked HARD over the years to find ones that work good together even if they weren't THE BEST IN THEIR FIELD.

I realize YOU might say, "fuck that- I want the best." And fine- have them. But to me - "the best" on paper has always turned out to an egotistical asshole who overlooks my chart, doesn't listen me, and thinks I'm faking because I don't CRY when I'm in pain or I DO CRY because I'm afraid.

Anyway- I have to see several new specialists here and I'm afraid of 2 things. 1) they will think I'm faking and 2) they will say, "let's wait and see"... and to me this has always turned out badly for me... bc if I tell you my left arm is numb and hurting and I don't feel well - I'M NOT FUCKING LYING. I have acromegaly - I'm not sure if this has caused my heart to enlarge or it is simply making my soft tissue and ligaments hurt - like wrists and arms etc. And bc of lupus I get pericarditis and pleurisy all the time. AND I'M NOT SURE what's going on. I'm SORRY I'm not an expert enough to know. AND I'M SORRY that it is the complex nature of my health that they intersect. But one specialist here said, "I really think you need to see a cardiologist right away." But of course, I'm terrified the cardiologist will be a jerk.

I know from past experience that he's likely to run an ecg see normal and tell me to stop whining. And you know what- I'M NOT FUCKING WHINING IF I'M JUST REPORTING MY SYMPTOMS. I DONT WHINE.

So there. It is past abusive behaviors of doctors that so terrifies me. And a little of the unknown of the future. I don't know what I'm going to find. And I'm replacing so many specialists right now - ONLY the ones I can't keep - the ones I NEED here. I still fly back to Atlanta to see the ones I don't need to see regularly.

I miss my doctors in Atlanta. And I'm glad I've found a few good ones here. But I have to say- somedays - I really get tired of being THE NEEDY ONE. I really do. I wish I didn't HAVE to go through this. You'd think I'd be over the fear. But it is like starting school again - seeing a new doctor - knowing they have the power to be mean - and the power to tell me I'm a liar. And I KNOW FROM PAST EXPERIENCE IT HAPPENS. I HAPPENS ALL THE DAMN TIME.

If I could tell you how many times shitty doctors have told me "go - and sin no more" -- I fucking hate leaving the doctors I trust for new ones. And it is worse that I know the statistics and I also know that the more healthcare I get the more likely I AM to become one. And I FUCKING HATE IT.

Thanks for listening.

I love this!

2011-02-17T21:09:00.001-08:00

Ahh! Melissa, my friend. It is great to observe the Sun making its annual return in celebration of the day you entered this Life. May the new year bring more opportunities to shine forth the Light of your heart and the depth of your mind for the many with whom you come into contact.

Each of us shines our Light in myriad ways, none better than another; merely different expressions of the One Light. And the beautiful part of it all is that as we shine in our own way, we express that energy which animates all that was, is, or ever will be for the benefit of All. Therefore, shine your brightest Light and enjoy both your journey as well as your plans. You are Great, know this!! Salut! - Baruti Kmt

A Letter to Doctors Sending Me to Collections

2011-02-15T12:22:00.000-08:00

Dear every doctor who is collecting:

Over the last few decades I have accrued hundreds of thousands of dollars in MY SHARE of healthcare fees. I have done EVERYTHING possible to avoid debt because I'm a "responsible" Midwestern gal. I paid off every credit card each month... till I had to start putting HUNDREDS OF DOLLARS each month just for my medications to keep me alive.

I know when you look at your income you won't see that. I know YOU just want to get paid because YOU went to school. Guess what- SO DID I. I'm sorry that this feels like an adversarial relationship. I get bills from you - labs, rad, surgery tech fees ranging from thousands to even $11.19. I have tried over the decades to make payments but when the bills ad into the hundreds of thousands even when I'm INSURED, and I am either during my gravy time employed or worse a student making about $700 a month - a I spend three times that on my medical fees - I cannot POSSIBLY re-pay you in full. I'm sorry we live in this era lacking in healthcare reform.

I know many of you pretend to want it and then go on sermo and bitch. And I'm sorry you think you cannot possibly live without making plenty of money. I cannot possibly live without healthcare. I WANT TO THANK the physicians and healthcare workers who have taken their time and effort to keep me alive.

Over the years some of you have been really kind and offered to let me pay you $5 a week. Some of your office managers have been amazing to work with. Others of you have called me horrific names like lazy or a bum. Some of the collections agents you have employed have said, "I would have made better plans for my life." As if any of us plans for chronic illness. Additionally- I have NEVER been rude or unkind to the agent on the phone or pointed out that I have TEN TIMES the education they probably have and I did it SICK - No - I have always been gracious and attempted to make payment. BECAUSE I AM HONORABLE. I believe people should be paid.

When I have worked with the poor - or even the middle class or blue collar people who don't have the means - sometimes I have ignored payment. Once, an HIV pos guy bounced a check. I ignored it. You know what he did. He decided to move to his parents in Cali and he cashed out his 401K and paid his balance of $1000 to me. I cried. I was so humbled because I would have NEVER ASKED for it. I knew his expenses. And at the time I was able to work 2 jobs and had insurance.

I have done very questionable things to have insurance - like marry assholes in non-romantic bargains - because FUCK THE MAN - AND FUCK BIG MEDICINE AND FUCK HEALTH CARE. I'm basically uninsurable without someone to marry me or IF I can hold a full job TRADITIONAL 9-5 (or in academia all hours job)- which I rarely can anymore without taking entire years off for treatment in between and going on cobra - and writing.

Each time I do this - I hold my breath that I don't lose my healthcare. My insurance has wanted me dead since I was a little girl. And I have seen MANY healthcare providers who glance fleetingly at my bloodwork and are AFRAID of me. AFRAID to touch me. I am HUMBLED by the healthcare workers who will face me. I AM HUMBLED by the doctors who will deal with me and that is why I work so hard to repay the ones who have worked with me the longest.

I have no savings or much retirement left because I have used it to pay for my ongoing healthcare. I want you to know that is how important it is to me. I'm sorry if you feel angry or screwed over. I want you to know that I feel dirty each time I get a collections letter. And I want you to know that you can't POSSIBLY MAKE my credit any worse. I'm sure that is one of the reasons why my ex divorced me. Because he could never dig me out of such an enormous economic medical hole. Even doing bankruptcy NOW wouldn't stop the debts that incur in the future.

I'm not a bad person. And I want you to know I don't think you are either. Only two of your office staff managers ever been rude in all this time and one she made cry and the other was just a cunt and told me I was a bad person. Neither understood there is a difference between illness and bad. I'll chalk it up and mulligan it.

I deserve to live because I WANT TO LIVE and I have worked HARD to stay alive. And I have made important contributions to this world. So when you get really offended -and some of you have called me and directly spoken to me and acted really indignant and some of you have office managers to deal with the dirty work of money - I want you to know - I'm SORRY that I owe all so much money for my healthcare and you probably won't ever get it because I'm currently using what I have to stay alive NOW.

You won't ever see this letter. And I know you just think non-payment is a slacker who took advantage of you. But I will tell you this. Once, when I was working with a chemo patient, her oncologist sent me a check from a different state because she was so moved by the work we were doing and asked to work with me as well. And she did- along with her partner. And you know - I REALLY FUCKING NEED THAT MONEY at the time. So god has infinite mercy. And if you open your heart sometimes you will get the money need. It is how I've been sustaining for ever. And ever. And ever.

Every drop of debt on my credit cards and in collections right now has gone to keep alive. I call that honorable debt. And I just want you to know that if you are feeling bitter right now, the only promise I can make is that I try every day to touch the world and make it better and contribute since financially I am not able.

Sincerely,

Melissa

Why Policing Drugs is Stupid

2011-02-12T01:24:00.000-08:00

Today I got into a conversation with some pharmacists about drugs and addiction where I presented an idea that we should decrim and tax drugs. They freaked out saying, "I don't want to pay for that- blah blah blah - the cost to society - what people do with their bodies is fine- but not on mine dime blah blah blah"-- as though the TAX THAT PEOPLE PAID wouldn't cover it. Yes?

Anyway- we tax alcohol. It is an addicted substance. Some people handle it well. Some become quite abusive of it and kill themselves on it. Some drunk drive and kill others. We still keep it legal for everyone who is an adult. Even people who have contraindications can drink and kill themselves - even their livers and kidneys and bodies and blah blah blah - cost to society. blah.

We use "corn sugar" (the artist formerly know known as hfc) in mother fucking everything and kill our bodies with it. That shit is the devil. We knowingly eat all kinds of BAD THINGS. We put horrific things into our bodies, engage in dangerous activities, have unprotected sex, drive without seatbelts, carry guns, you name it- we engage in a wide variety of varying dangerous activities.

Why then are DRUGS such a hot button issue?

I can name a few that are THEORIES (not my own- but I subscribe to them) and some that are my own ideas as well...

Some theories presented are basically the construction of racism and construction of drugs as BAD. Back in the day we had laudanum as an ok thing to keep hysterical women in line but opium was illegal and a death penalty for the "dirty chinese"... seriously- same fucking shit. RACISM. Because we didn't want the Chinese working on the railroad.

Similar thing happened with pot -- Maryjane was ok till Mexicans were seen smoking it -then it was constructed as a "lazy wet back drug"-- and then a beatnick drug-- and it ONLY THEN became criminialized.

Coke has always had a LOWER sentence than CRACK even though it is THE SAME FUCKING DRUG. Brown skin higher sentence. Wealthy people afford coke, poor (broke) folk smoke crack. R-A-C-I-S-M. Construction of drugs as bad. The war on drugs is a construction.

This is a theory. I buy into it. Because how then can various LEVELS of alcohol be legal in beer and wine be higher. Then 2 years later the alcohol level go up and be legal again?

Meanwhile - I said - decrim and tax. The pharmacists went NUTS. Then you'd have to make OTC - BLAH BLAH BLAH- people would get addicted. blah. I said - no. People who will abuse drugs will ALWAYS ABUSE SUBSTANCES. In countries where there is decrim and available drugs - there is NO higher amount of drug use OR abuse or addiction. NONE. The only thing there IS are foreign assholes who come in and vomit on the streets and make them have to clean it up in the morning. VERY ANNOYING.

THEY also have a high amount of ED visits - the foreigners. But the locals - NO higher amount of addiction. Just like making liquor legal doesn't make MORE drunks. People who will be alcoholics will find a way to drink - even if they have to make illegal stills to do it. THEY WILL FIND A WAY.

Anyway- some of my theories is that pharmacists (and doctors) get so many drug seekers they get jaded about pain and real medical uses for opiate medications so they forget that 1) people do have real pain. 2) they forget that even if they sold pain meds AND opiates were decrimed and moved otc as well only the abusers would go there and suddenly they wouldn't have the users knocking at their doors... and 3) if you took acetaminophen (paracetamol) out of the drugs it would have less impact on liver - and get people higher quicker... People know this shit. They have enormous drug comparison sites on how not to OD and how to detox their liver. They are amazingly adept at how to be a good druggie.

Another of MY theories are that we do PILLS PILLS PILLS too often for real pain control - we get many people dependent (not addicted- but dependent) on them and they reach for them far too often. Insurances don't PAY for the many varied modalities to control chronic pain - leaving the best ways to deal with acute pain confused with chronic pain.

Another - we do not TEACH MDO'S (or pharmacists) (or any healthcare providers) much about the science of pain management. There are certain chronic diseases that require much more palliative care and medication management than others. Additionally- multi-dimensional care is the best resource because people who FEEL IN CONTROL of their pain - and know they can have it without suffering feel better than those who do not.

People who have no to few resources cannot afford the types I'm talking about. I once went to a pain clinic to see a "pain counselor" to teach me bio feedback. It is ALL I WANTED TO KNOW. He wasn't expected ME - a woman who has rolled her entire life in pain. I'm highly educated, I don't have the affect of someone in pain, and I am VERY SUCCESSFUL. ALL I FUCKING WANTED was to learn bio feedback.

He started treating me like a seeker- and called me "self-aggrandizing" in my chart. SERIOUSLY. I normally wouldn't review my chart- but my neuro and my neuro-psych and I wanted to know after SIX FUCKING VISITS I had yet to learn a DROP of bio-feedback when THAT IS ALL I WANTED TO LEARN. When he asked my pain I'd tell him I was rolling at an 8-9 but that was ok. He never believed me. But really- on the scale when he'd add it up- yes- it was probably something that would send most people to the ED. I don't take drugs unless I cannot move for more than 3 hours. THAT IS HOW LONG IT TAKES ME SOME MORNINGS TO GET UP OR DOWN MY FUCKING STAIRS. So I wake up earlier. I handle my life. Pain is not my identity and there can be pain without suffering.

In my entire life I have NEVER been high on anything except IV'd fentanyl. And trust me - those were post-op and I was hurting too much to enjoy it. I presume my lack of high is because I have never been out of pain enough to feel the effects of opiates. I've also never been "dependent" because I get off them when I can, take fish oils, and use as many non-pill pain management technics as possible. I form relationships with my docs and my pharm staff so they actually know me, and I avoid the ED like the plague- for both disease avoidance, and to avoid being treated like a seeker or a junkie. My drug list takes up two pages of meds and isn't only in pill form. I don't need judgment.

People HATE chronically ill people. Human beings run away from disease. We instinctively back away from a cough. Imagine what people do when they know you have illnesses. Lucky for me my illnesses are invisible. Unless I OUT MYSELF- which I do - I DO. As an advocate.

Meanwhile - some people who "serve" also seem to out themselves as anything BUT servants.

Really- OTC HIGH TAX drugs. That way the only people going to a pharmacy would be people like me- the ill. The people in need of help using their drugs. The people in desire of a team of helpful, kind service oriented relationships.

Meanwhile - If I walk into your fucking pharmacy with a smile on my face and make friendly with your fucking techs- and they hand me oxy or dilaudid - trust me - I'm not selling them to my fucking pimp. There wouldn't be the need for that anymore- bc there is already a business handling the drugs. Anyway-- I have thousands and thousands of dollars I use to stay alive - and I keep people the pharmaceuticals in business. And I rarely talk about my specific rare genetically jacked illnesses - which are NOT JUST LUPUS - it was just the one I got as a child. I'm annoyed by PET SCANS and illnesses and I'm annoyed by cynicism.

I also recognize that people throughout history have found dozens of ways to kill themselves. If you move the riff raff out of the pharmacies and into coffee houses (or whatever you want)... the pharmacists and doctors won't have anyone else to hate on -- THEN WHAT WILL THEY DO??? Then they'd have to shut the fuck up about the drug seekers and actually have to be mother fucking public servants.

*faint* fucking *gasp*

Yes- I'm annoyed and angry right now. THIS IS DAMN VENT.

I'm tired of being sick. And I'm tired of my drugs being stolen by junkies- because you know what-- THE PHARMACISTS AND DOCTORS DON'T GIVE ME BACK MY DRUGS - NO THEY DON'T. Because of "policies" -- no matter how long the relationship - and police reports. I've had my house robbed of THOUSANDS of dollars and every drug in it (they found it by accident as they were robbing my jewelry box) - AND when I called the pharmacy to get my KEEP ME ALIVE DRUGS- they could replace everything but my pain meds. My docs wouldn't replace my fucking pain meds either. After YEARS of relationship and a police report. So YES- I have been hit by junkies too. I get the drug problem. I have learned to live in pain - but such cynacism and lack of trust HURT ME - THE PATIENT - the one who couldn't fucking walk at the time and was post op and in a wheel chair.

SO YAH-- I have some anger still. I get the various sides. But pretending you are special because you police the drugs - and we have drug police on the outside - doesn't make it real. Drugs are no more or less dangerous than GUNS and we sell that shit to *everyone* with no doctor to Rx it.

Drug addictions are just one more social problem in the layer of social problems. But they were around LONG BEFORE PHARMACISTS. OR The dea or doctors. People will always use addictive substances... but not everyone who uses them will become addicted... and not everyone who uses them is bad. That is a fucking line made up to moralize an issue- it is a CONSTRUCTION.

But at least hear the different sides of the story. Drugs are not that big of a fucking deal. EVERYONE isn't out to use them. Pharmacists and doctors have to police drugs and the DEA is there BECAUSE they need to ensure their own job. If there were not "war on drugs" the DEA would become moot. And if there were OTC drugs - the pharmacists would have to sit around counting pills and calling insurance with their techs- but no one would get robbed for them... And I wouldn't be refused my pain meds after my house was robbed... and if i was - at the very least I COULD access them if I wanted.

And you know what-- my CANCER FRIENDS kicked in a few each of THEIR PILLS that month and I took fewer doses till I was ok without pain meds. And I have taken very few opiates since them. But I will NEVER FORGET what kind of bullshit system we have created with our "attitudes of police" and the "war on drugs" and the bullshit system we have in place. And how we criminalize REAL PATIENTS who need drugs when they REALLY have been stolen... my entire house was trashed- and they filled all my other Rx's - but oddly- NOT THE PAIN MEDS.

Also- I always hoped to god they snorted the lomotil. The whole bottle at once. (even though I know druggies aren't that stupid)

Changing the Culture of Medicine

2011-02-01T18:27:00.001-08:00

This is from an e-mail exchange with a friend who is in nursing: We are discussing the culture of medicine. He asked me: "How do YOU think the culture of medicine needs to change?"

This is my response:

"OK - I'm just one person, and I come at this from many layers - mostly as a patient - but culturally in the US - we need to have more patient advocates, more RN and healthcare staff advocates (re-overstaffing/benefits), more socio-economic equality for healthcare and not cater to the tools and corporate interests and not have MD's who are shills for Big Pharma on one end and woo and voodoo throwing out crazy style unfounded alt (though some is cool) health with out medical evidence on the other.

We need to change the culture of medicine so that SICK HEALTH CARE WORKERS are not expected to go to the hospital sick and get their patients sick. Especially bad if you have immunosuppressed patients. They also don't follow rules like putting on their coats or washing their hands - getting their patients sick. We need to stop treating janitors badly and underpaid/under employed and contracted out so that our rates of infection (like MRSA and C.DIFF raise all the damn time). We need to stop catering to patients who scream for antibiotics when they are not called for thus again - raising incidences of abx resistant superbugs. And we need to have more doctors willing to work collaboratively.

Many doctors have been taught to fear each other's opinion and distrust it. They have also been taught that it is not ok to say I don't know. They have been taught that making a mistake is career ending and we have too many litigious people using law as a way to harm medicine as opposed to gain compensation for real damage. HOWEVER -that is often the only recourse BECAUSE doctors will not call each other out when they are CLEARLY engaging in dangerous practices-- because there is not a good way to PEER control each other. Doctors live in a great amount of fear from all sides.

Too often GOOD docs get thrown under the bus by litigious patients and shitty awful docs continue to practice ad nauseam while other good docs around them run around putting out the fires that they cause - and saving the patients.

People are either over or under diagnosed - often based on their primary care doctor. Especially women in this country- have LONGTERM CHRONIC ILLNESS whilst mean tend to get off lightly and die quickly of things like MI's - yet we don't put our money into researching things for "women's hysteria diseases" - instead we make Pharma dollars to shut them up OR we ignore them and let them to on the rolls of disability. Things like autoimmunities and rheumatological illnesses are just as life altering as cancer - but get very little funding in the states because 9/10 are women. I'm not saying this as a feminist - just pointing out that it is a WOMAN'S PROBLEM. This further disenfranchises a huge number of women and women with children leading to more economic distress - and to doctor/patient resentment and mis-trust of each other. Doctors generally hate their chronically ill patients - especially their medicaid and disabled ones - especially ones who have low- SES and low-education and who are not going to become empowered via other channels.

In many circumstances, in this country, "getting on disability" is the best thing to happen to people because they will have actual healtcare and money coming in. And getting a job will actually LOWER their financial income and make their healthcare dependent on a job. This is problematic if they cannot sustain more than a part-time employment. The AIDS-taskforce finds that many people - once their HIV has been stabilized can work even full time, however their drugs are so expensive they cannot get off the rolls of disability because their pre-existing condition clauses in most work and employment situations leads them to avoid taking the chance of losing their disability. In addition, the wait to get back ON disability once they leave, is at MINIMUM 6 months, meaning their HIV drugs will have to be paid for out of pocket or not be paid at all.

This is true of chemo patients and all other patients who are capable of working (some part time and some full time) but are dependent on disability to pay for their expensive HEALT CARE but would LIKE to work. It is an abysmal and ridiculous system. If we had healthcare available these people could easily work and if necessary cut back to part time. This is especially true of educated people who have a place in the working world, but rely on healthcare for lifesaving medications. It is a known problem among researchers for some time and yet we allow MILLIONS of people to stay on the rolls of disability because we don't create healthcare solutions for them EVEN WHEN THEY WISH TO WORK. There is no way to have partial disability or helathcare and try to work. It is all or nothing.

Additionally, manytimes alternative and complementary medicines are not trusted when they in fact have medical evidence that they work. Things like acupuncture and reiki have been shown to reduce pain -especially post-op pain and lowback pain. They reduce requests for opiate medications yet sometimes insurance pays and other times it does not. There is little to no standardization with healthcare. Pain management- one of the leading problems in this country- stemming not just from post op issues- but also cancers and "back pain" etc -- cause people to seek help. Yet there are dozens of ways to treat pain. However, the easiest and quickest - BUT NOT MOST EFFECTIVE WAY is to quickly and easily Rx a pain med. When things like bio-feedback, physical therapy, and massage, and even small doses of pain meds (especially for auto-immunities and cancers etc) are effective. yet insurance RARELY pays for integrative methods. And people want quick and easy. And docs don't like to invest in learning more or they don't have time or they are exhausted or insurance simply won't pay and the patients claim not to have the MONEY for other things and so THEY TOO write the Rx. (or they refuse and REAL pain patients suffer with no treatment- it cuts both ways). And so the culture of medicine never gets changed.

The food in hospitals is some of the worst - AND further - why the hell do we have DONUT SHOPS and cookies and vending and soda machines in hospitals when we CLEARLY KNOW what that does to health? Should they be a bastion of GOOD HEALTH AND FOOD CHOICES??? The answer is always "People's choice." But if hungry upset worried people HAVE NO CHOICES they will fail to make good ones. If you have a small cafe open offering good low cost options - people will often buy fruit and veggies and yogurts and HEALTHY FOODS.

I could go on - but you see -I am telling you that they go to work in a broken system - with lack of decent funding and insurance - in a system designed to PROFIT on people and individuals can do very little to make it better. Each person can try- but each person is at odds with each other, specialists, insurance, bosses, bureaucracy and their own family needs.

So - the entire system and culture must have changes. I study it from the outside looking in - understanding many voices and seeing all sides. And being open to all voices. I am not here to dictate the changes -just make recommendations.

Connection

2011-01-31T23:32:00.000-08:00

Today I sat and discussed "family" and connectedness and what it means. I said to my therapist that I have never been so alone as when I was in my marriage. I have never been so completely lonely or untouched or perfectly harmed.

She in turn pointed out that we are never connected BECAUSE of people but because of our hearts. It was a quote she recalled- about only god being able to fulfill our connectedness.

I believe this. I have been missing my connection. I have also been NOT dating. And there is a part of me that feels afraid that I will be ALONE forever. And a part of me that feels unlovable. And a part of me that feels sad that I don't have children. And a part of me that feels too fat to BE lovable. And parts of me that feel completely opposite of all this.

I have spent my life healing and loving and learning how to forgive and love and be loving and lovable. I know that god has infinite mercy. And you can insert whatever name for god you want - but I KNOW that where I am right now is not where I want to be. But no PERSON can solve this for me. Perhaps people and connectedness and healing and loving can - but a PERSON cannot take away my FEELINGS of lack or fear. I must engage them myself. I must FEEL them.

And ultimately - life is a process that we go through alone. YES perhaps it is my job to learn vulnerability and trust. YES it is my job to start making wise choices about who I love and how I have boundaries - because sometimes people do cruel and unkind things and it is not MY fault.

I just spoke to a former English teacher. We became very close when I was in uni and then we became close when she was in treatment thru chemo. And then she got her PhD and I watched that. She was the first person to ever call me a scholar. And when I graduated from undergrad she was there encouraging me to get my grad degrees. And back in those days - I TRULY felt stupid and unworthy. I felt higher education was insurmountable. My parent's friends paid for their educations or at least helped them.

My friends were single. My friends didn't work full time. My friends traveled. I felt crushed by insecurities and judgements. They still creep up but not as often. Some where along the way I was healed a little more and a little more. To where now I only feel it a little. I feel fat some days and agoraphobic and am afraid to go out and meet people. I feel afraid to finish writing least I not say what I need to say. But slowly I am learning not to judge myself against other people and am less worried about what other people say ABOUT and TO me.

EXCEPT FRIENDS. When I embrace friends I expect them to be REAL. And I am noticing they are not always so. I am learning slowly to forgive. And I am learning to RELEASE. I am learning to have fewer "friends" than I thought I needed. And - sometimes I question myself. I say, "Would X come here to visit ME?" But the answer is YES. Throughout my life my friends have been IMMENSELY generous with me. I have been INUNDATED with love from all sides. I have been CONSTANTLY shown love during my most necessary times.

And so perhaps X might not visit - because *I* need to visit them. Perhaps I need to be the friend this time. It isn't always about me. And I am learning this.

Only god can give me a sense of fullness and connection. I know this. I meet people all the time who seem to have a COMPLETELY FULL LIFE and yet they are not happy. I meet people all the time who are living a joyous life yet seem serene. Because they have chosen to be connected. THIS is powerful.

I need to know this and feel it.

Scars on the Inside - Love Connections

2011-01-24T20:54:00.000-08:00

I was talking to someone who has a scar on his cheek last night. He was sharing his childhood story with me and it was very painful. His scar is bc he had a birthmark and he had to wait until he was almost a teenager to have it removed. The scar is still fairly noticeable but doesn't distract from his appearance at all.

However, his story is one we can all understand - one of being bullied and picked on for being DIFFERENT. In the story he said, "For that reason, I don't think I ever want to have kids." It hurt my heart.

He is shy because of it and very sensitive. I listened to his story. And I reminded him in the "gift of the hit." How none of us escapes wounds and how all of us have scars- just some of them are in our hearts and not on our faces. And if he looks around he will see every single person in the coffee shop is living with the same woundedness. I'm not sure he believed me, but I know it to be true on some level. There are those who are wounded and those who wound. And some of us heal each other along the way.

He was feeling frustrated because of his shyness and his quiet personality. I thought of all the beautiful flowers in my garden and how they are all so precious. And how each of them are formed. No one is ever "perfect." And if a loud flower didn't have "quiet" greenery as a backdrop nothing would ever truly get noticed.

Every bright flower requires some distance from the other bright flowers. Every backdrop and greenery in the garden makes all the bright flowers pop. It is part of it. No one can feel betrayed by the others. They are all important. The tall ones are powerful and the short ones are equally necessary. Everyone of them are beautiful. The only one that EVER drew my breath in amazement was the lone rose that bloomed in December. It always made me love it the most BECAUSE it would bloom at the oddest times and it would bloom BEAUTIFULLY yet straggly like some people.

I cried when I described my garden. I love gardening and I haven't for several years now. I need to have my hands in the dirt. This spring I will make a small one in an above ground one, even for a few little things. I need to see things grow.

But I also cried for his pain... and I cried for my own pain. I know my heart is wounded. I feel unlovable and terrified of being loved least I am thrown away at the wrong time. I feel blamed for getting sick at the wrong time. And when I meet beautiful people I am both happy and frightened and I have no way to describe this duality except to say that people and hearts are contradictory and SO AM I. I am no guru and I am no saint. I am healing every day.

I described this to my therapist today and how much pain I am in about it - and a few things that are STILL happening because of the divorce- like not being able to just transfer my title to another state because we were co-signed... I shared some of my illness and divorce story with her.

She shared a powerful story with me. POWERFUL.

She told the story of a sociopath expert conference. In it hundreds of experts on sociopaths were gathered... each one of them were listening to the foremost expert talk about how a sociopath thinks compared to "normal" people.

A sociopath who had murdered and then hurt people was out of prison. He was walking past a funeral. He recognized the name and went inside. He thought the daughter of the dead man was hot so he stayed and talked to her. Realizing that it was not the right time to get her phone number, he left. He knew her brother and he knew there were other ways to contact her later. How do you think he got in touch with her? They were able to talk about it for about 15 minutes.

My guess was that he'd get in touch with the brother... right? And have him put him in touch with the sister. Right? Everyone else said something similar... Because they knew each other. Friends of each other... using networks and connections. Even waiting outside her work. Anything NORMAL. (The good thing is if you answered this way YOU ARE NOT A SOCIOPATH). No. He killed her brother. And went to his funeral and "comforted" her again and got to know her that way. And THAT is how a sociopath thinks. And you will never know. The only one who will EVER schonooker a sociopath is a better sociopath.

She said to me: "An abused person can get taken in by a sociopath. A normal non abused person can get taken in by a sociopath. And a sociopath can get taken in by a sociopath."

"Forgive yourself. You are not to blame for what happened to you. They only "betrayal" you did was to get sick Melissa. Otherwise you would still be part of the scheme and you'd have no idea what was happening."

And something in me lifted. Just a little. There is love in the world. Sometimes people are so good at it that everyone is fooled. Sometimes people are in "sales" for a reason. Sometimes people are wealthy for a reason. And they sell EVERYONE a line. And I realized that they even sell themselves a line. And THAT is why I don't talk about it. I want it to be over. But over and healed are two different things. Because this is MY illness story. She pointed out that part of healing is not living in the past - but not being ashamed that there was one.

I am deleting my online dating profile. I cannot date right now. I cannot. I have wounds in my heart so huge that I feel haunted by love. I feel terrified of kindness. Once - in jest a friend flirted and I freaked out. I was like "DO NOT make romantic overtures to me - even jokingly - because you have the life I want and you CAN date". I'm sure I perplexed him bc I JOKE around about sex and silliness so much. And when I date - I automatically realize that I only go out with people once or twice and then I'm done. If I feel even the slightest comfort zone or love connection - I'm instantly terrified... I cry. I'm so afraid. The past haunts me.

For now this is how it works. I'm sorry that this is my illness story- even though I feel like I'm almost done being truly ill and am on the mend... even though I'm at the point where I WANT to date. I don' t the answers except that perhaps sharing it will help it heal.

Lessons Learned

2011-01-22T00:59:00.000-08:00

Today I had a physician openly talk about my case with other physicians in front of me. Why? I have no clue. Perhaps it was a teaching moment, perhaps it was on their mind. I know some of my doctors do not agree with each other. And basically- sometimes they are simply old school and don't know the new methods. And quite frankly - I DON'T CARE WHY.

In my heart I am a private person. I am vulnerable like anyone else. I started this blog as a healing journey and a method of discussing health and wellness. I didn't know where it would go. But life is complex when we are healing. It is even more complex when we are revealing anything personal about ourselves - like our hidden parts- our fears, our injuries, our illnesses, our fears.

And somehow listening to a discussing of one's own health and hearing another practitioners methods criticizes felt just wrong. It felt personal. There was more to it than what was understood on any side and I never spoke up because I was actually anonymous. Methods are methods. And the teaching moment taught us all a great deal. It worked.

Meanwhile - I also learned something about my own research. I am dealing with real lives. And I actually have CONSENT to discuss them. I have their permission. And yet it is always vulnerable to examine lives and talk about people. And yet it is what I do. It is what I have picked. So it helped me remember when I am discussing the people involved in my research to treat them with respect - even if they are engaging in behaviors that are outlandish or I disagree with them - to tell their stories in a way that is honest and real. And even if I do not understand or I disagree with others - to not JUDGE harshly because I DO NOT KNOW the whole story. To remember I look to only one lens. It was a lesson for me.

Sometimes lessons don't feel good. I hated it. It made me feel itchy and yucky even though nothing about ME was said, just "the case." Other doctors were criticized. But I like this other doctor. One who is helping me heal in powerful and important ways. And this other doctor is family to friends of mine. And it is a small small world. And life is like that.

Meanwhile - I have been getting back great medical news. And I am hoping to keep it up. I am doing gluten free and other important lifestyle... but I know it sounds very boring if it is not your cup of tea. Yet - I have the right to celebrate the good here too. Yes, I still have an infection and am on a constant round of antibiotics for it... but life is smoothing out. I can feel it.

Now for the finishing of this chapter. Now for the finishing of my writing. Now for the culmination of what I came to Ohio for - this healing path.

Conflicted

2011-01-11T23:24:00.000-08:00

I've been conflicted lately about identity and health and illness. (And identity in general lately). I talked about it in an earlier post. I never did like the idea of labeling myself by any ONE thing... but lately I've felt REALLY conflicted about this whole illness thing.

It is heightened by conversations I've had with multiple people (interestingly who are NOT ill, nor do they identify as ill and one of whom doesn't even LIKE to discuss illness or deal with it but somehow will with me because we have become friends).

Anyway- one of them is all about mind-body connection so is always talking about how they are healthy because they WANT to be healthy. And I remind them that they are possibly healthy because they are LUCKY. But that doesn't help my guilt feelings... because part of me has ALWAYS FELT somehow punished.. - like I have done wrong or if I was a better person I would be sick. I think all of us feel that way.

This person also asked me once - WHY I have so many sick friends. And I remember replying - bc when the chips are down and you're really ill and in the hospital for periods of time - your healthy friends don't tolerate you but you're sick friends and caretakers and people who have been through illness and come out of it all do. I also don't want to be like a self-hating Jew or a self-hating sick person... one who fears my own self-hood. It is OK to embrace all of me. I just don't need it to identify me.

I dislike people who ONLY identify as sick... I HATE being torn down by constant whining and the constant conversation of sick talk. It is as though we cannot have LIVES. I am uplifted by hearing about families or school or work or pets or hobbies or the many other identities and joys or pains or LIFE that go on besides that. I also have pain for the medical profession where people are taught both shame and stoicism about their own health... which I think is deeply imbedded into all of us but seems to somehow come out more there... And I wonder how it is that our healers are trying to heal... and I realize that we must all begin to heal each other.

And this is why I thing if we are open we can find a certain sense of healing within ourselves and community and from within and without. I have been healed over and over from many places.. But having people question my illness and my mental desire to have any illness identity at all has brought me some conflict.

I realize that "thinking myself well" is nice.. and attitude is nice. But I feel like hell right now. I've made plans and I've worked. I've gotten writing done. I've done my healthy eating. I've been kind. And I've even seen some healthy shifting in my blood. However - ignoring HOW I FEEL because I WANT there to be an entirely mental connection and ignoring the physiological connection or heart connection is ... it isn't true to me either. Avoid sick people is just as self-hating as avoiding my own reality.

Also- it IS true that it isn't sick people I'm avoiding - it is the COMPLAINING and IDENTITY of WOE and the almost suffocating and cloying affect it has on me that bugs me. Emotional pain or growth and physical pain doesn't bother me. We all go thru it. I don't like being emotionally manipulated... and I also don't like the almost... competitive sport of illness.. just as I don't like the arrogance of other professionals... I threw in my ego towel long ago.

Have your one-up-manship... go - be smarter -faster, better, more sick, more intelligent... go WIN at everything... But that main problem I am having with SOME in the illness communities is that lack of support. If I tell some people I have a migraine or any symptom I get genuine empathy. If I tell another patient - I often get an almost competitive response. WOW - I'M SICKER-- LET ME TELL YOU HOW AND WHY.

And you know what. I don't do that to them. I am kind and gentle when others feel like crap. So I just don't say when I hurt or I feel sick. And THAT IS FUCKING BULLSHIT. What's the point of having so-called-genuine friends if they are so competitive. Why have people who stick around when the going gets tough?

Anyway - I've been feeling an impending sense of abandonment. I am switching to a new rheum up here - and that terrifies me because it brings up all the old horrific experiences chronically ill people have had. I'm worried about any thing from them saying, "If you'd take better care of yourself you wouldn't be ill" to, "You're not even sick - get out" and refusing me care. Of course, I can always go back to Atlanta and I can continue to phone in my Rx's till then... but just having a new doctor with NO history and no relationship scares me.

So that is what I'm experiencing. I have many good things going on in my life - but this is my medical stuff. And this is why I don't blog as much. But a few of you have reminded me that writing is also important. I often am inspired by you. And I feel like what I write is so stupid. I've been feeling low and dumb. I just have. I'm doing dietary changes and working to make a life for myself but everything in my life is NOT what I want it. And this is ok. Sometimes it takes a while to work out.

Thanks for listening.

Hope and Commitment to Healing

2011-01-07T06:26:00.000-08:00

So I am starting a much more stringent eating program - which will cause some paleo and carb nay sayers to faint... but there is so much happening with my kidney and liver numbers right now I just can't risk putting that much more stress on my body and ignoring the evidence.

I am NOT happy with my sed rate- which has almost tripled... My numbers are in a cluster fuck and I have so many intersecting and complicating factors right now I'm trying to take it easy... Meanwhile - I'm starting a new diet plan where I am being even more vigilant about gluten than I have ever been, taking out known latex fruits, removing the nuts from my diet, and adding some meats like lamb and beef - which I never thought I would say- and see if that helps the anemia which I have yet to help through supplementation alone.

My whole life I have promised myself I would NEVER have an identity of just my profession or my husband or my illnesses... etc etc.. we must always be MORE than one thing. We are all capable of so much more. Helen Keller taught us that... but so did the people around her who learned from her... and her teacher who taught her and her family who spent time with her... all of us is MORE....

Research indicates that if you go to a support group for YOUR illness (if you only have one) the group conforms over time to the sickest person there. (But if you go to a support group outside your illness, it has NO IMPACT on you). I don't know if it is a pheromone thing or a chemistry thing or a group mind thing... it's like a dorm room where we all get our periods at the same time in synch. And in a way I've been spared that because I have so many illnesses I stand alone in many ways. I have more than one identity so I refuse to say I have x disease. So I have never gotten "sicker" from a support standpoint because I don't have that identity. This is why I avoid labels or calling myself a special name or don't say, "My disease."

Once a friend said, "Melissa, good luck with your lupus." And I freaked out. I said, "It's not MY lupus- you can have it." He laughed because he was trying to be kind and said, "You're dealing with it more than me. And I thanked him for his kindness. But I never say, "My" when discussing anything except a TREATMENT for an illness. IT ISN'T MY FUCKING ILLNESS. I wasn't created for this. I RESENT illness. I'm tired of it as much as any person would be.

Meanwhile support is important... sharing is important loving is important. Healing is important. It is why I enjoy the online forum but still don't own LABELS that much... It is also why I like to support MULTIPLE causes and illnesses because we're all in this together as advocates, healers, teachers, and patients. When we stop believing in wholeness and healing but in brokenness /victims and fixers we become estranged from our true ability and really disenfranchise ourselves from what we CAN become.

I'm having hope now that by creating an even better lifestyle I can heal even more. But yes- I am a little unhappy with some of my numbers. I'm not happy with some of my markers and I do have hope that I do better in the coming weeks. I HAVE HOPE that my commitment to healing works.

Becoming More Beautiful

2010-12-23T01:24:00.000-08:00

"When the Japanese mend broken objects they aggrandize the damage by filling the cracks with gold. They believe that when something's suffered damage and has a history it becomes more beautiful." ~Barbara Bloom

Last year I was in a neuro psych's office working on some cognitive shite and she said to me, "you seem good today." And I replied, "I'm allowed to have a good day." And she smiled and nodded.

It is important for me to remember that I'M ALLOWED TO HAVE A GOOD DAY. Every day doesn't have to be shitty. Every thing in my life doesn't have to be awful. I'm allowed to have fun. I'm allowed to celebrate. I'm allowed to laugh and tell jokes and volunteer my time. I'm allowed to suck up as much pain as I need to to have a NORMAL LIFE FOR ME. I'm allowed to have a good day.

Meanwhile - I'm writing this because I have a good endo now. I like her a lot. I like her entire staff. This is cool because I have many specialists I adore and I was REALLY hating my former endo. He just wasn't figuring shit out AND I felt like I was doing all the work AND he wasn't getting any clear diagnoses and I was floundering with no clear treatment plan.

So - good - I have a plan of action and I have a set treatment plan. And I can go back on some of my immunosuppressant drugs, which will help my health and pain flares. AND some of my moods are surely related to the hormonal issues which will soon be regulated. In six months, we'll recheck with another MRI and see if there are any changes. If not, surgery is always an option. So - I feel good. I feel safe. I feel like things are underway.

Life feels handled again. I'm generally in control, of at least knowing what's going on. I HATED not being aware. I hated being treated like it was my fault. It puts you back in the child's seat. I hated my mood swings because I was getting very low. Even knowing there was an organic reason didn't stop it. Rational doesn't make it go away.

Meanwhile - I'm doing my best. I really am. I'm not as productive as I'd like to be but I am hopeful that positive changes begin. And I'm trying to be gentle with myself. Some people are not getting cards this year- or they are getting them late. Some people are having to deal with my sad moods BECAUSE I FEEL SAD.

And - I also KNOW that autoimmunities are odd. Many of these bizarre illnesses have gotten worse because they have been complicated and gone without treatment. Once I begin to deal with the complexities - like the out of wack thyroid and the bullshit tumor and the little things that are cropping up, the other things like the immune system can simmer back down, be calm, chillllllll.

I was able to successfully get through grad programs, exams, jobs, marriages, businesses, comedy, a busy life. I can finish this up. I can finish this writing. I can heal and be ok. I'm sure of it. I keep visualizing perhaps a much calmer life for myself- but a life. Teaching, writing, living in a cute snug home. I must keep this hope.

Life isn't all bleakness. Even in the darkness there are messages- some are actually NOT depressing. When you are very quiet and still - sometimes you are quite comforted by the realization of quiet safety for a change. I rarely let myself be overcome by despair. Having a hormonal reason to give into worst case scenarios has let me realize my own worst fears. I'm done with that. It is time to pick back up.

Life during the holidays is sad for me. I miss many people and have many poignant memories. I will hold them and move on. It is all I can do. Life may not play out the way I had hoped but how often does it? I often talk to younger people who are arrogant and have very little respect for life. One even mocked me when I said that I would gladly date someone who had been heartbroken as long as they had taken the time to heal bc they would have greater respect for life. I thought- how little you know- how little you cherish life. Immediately they feel off the radar for someone I would ever date. A person who has never known loss or pain can never truly respect life. They called it, "baggage." I find it blissfully immature and wish them well. No matter what your age - you should be able to heal from it. We all carry that and heal from it.

Wanting someone with "no baggage" is a baggage of it's own. It is called, "perfectionism." And it is a way of finding so many flaws with others that we reject everyone instead of finding beauty with people. It is OK to have specifications for who we wish to be with romantically. But perfectionism is in itself a way of rejecting life.

They also told me that being ill ads an additional component to romance- like an additional flaw. I mean - DUH. I realize that. Though it is invisible and I could lie about it through omission once I'm feeling better. But I would not because that would not be honest. People bring all sorts of sundry bits of themselves into life. The partner who accepts someone accepts the harder bits too. But yes- illness is a biggie.

I used to think I was invincible when I was younger and men were attracted to my confidence. Which is hilarious because much of it was false - a type of bravado. Was that a lie? Or was it a part of me that I am more honest about now. I'm more honest about being insecure. I'm needier now. I'm more loving. And I'm braver. I'm a WHOLE PERSON. Does it make me more or less lovable and attractive? Who knows?

Reminiscing

2010-12-12T00:50:00.000-08:00

Just talked to my sweetie. We're both having a rough time. She said: "broken dreams /the holidays make it worse/ adjust to the life we didn't ask for / we don't want to shut everyone out/pick up the pieces/ plot a new course."

I've been so sad about my cat. It seems so ridiculous really. But I am. Maybe I'm just grieving him because he's a physical representation of everything I cannot articulate. Or maybe I can articulate everything just fine - but he was ALIVE and I loved him. And all the other losses that have happened were just dumb luck - but he was not dumb luck. He was sweet and wonderful and affectionate and curled up on my chest and purred. From the very day I have pictures of him sleeping on my neck - small enough to fit in a robe pocket and never happy unless he was being touched and loved.

I realize that he was a bit spoiled because he had "a good life" compared to many cats. But I WANTED him to be loved so much. He trusted me because he had no reason not to trust. I have adopted many such cats - but most of them were older and had been through more difficult early lives. He was a wee one. He was actually my ex's cat. But from the beginning- he walked straight up to me and meowed. And from the beginning he purred - even when he was a kitten. I've never known kittens to be such purr factories.

I'm just sad that he's gone. He represented the only good thing to come from my ex. All the rest is just loss loss and more loss. Last year I was just making it. I was surviving because I HAD TO. This year I look around and I actually have time to FEEL.

My possessions are in a city that is foreign to me. I'm going back in January and all I hope is that people remember me and actually want to see me. I'm staying with a friend I love. I miss people deeply. I miss my city. But I don't miss the pain. None of it.

I wonder if I learned from it. I wonder if I was supposed to or if I was just supposed to walk through fire.

My favorite house I ever lived in was a wee little blue bungalow I owned before I met my ex. It was just big enough for me. It was very snug. I actually felt more at home in that house than I ever did at the one I lived in with my ex. It was always more than I could ever afford. My former therapist said to me, "Melissa, you will plant more gardens, you will make more beauty."

I held on to her words because I couldn't believe her - so I just had to carry her words with me until I could. I'm starting to imagine maybe someday getting things written, getting my health settled, finding another wee place to live that is perfect for me again. Something where I feel organized and cozy and settled.

Yes - I still feel sad. For the first time EVER since the divorce - EVER EVER EVER EVER I did something I should not have done. This makes me sound like such a loser. I don't know why I did it. But today I discovered that he is in Tokyo. I have NEVER in 2 years attempted to find out any information on my ex. I have not even cared. I have not wanted to see him or hear from him or know anything at all about him. I wish that I had not looked up anything to find out where he was. I HATE that I know he is traveling with his girlfriend. I HATE that I know. I'm not even jealous so much as sad. Because I know he is grand. And I know in his grand gestures he does things like fly to New Zealand first class and propose on glaciers. Everything he does is magnificent. Even breaking up and divorcing is done in ways you will never forget.

If he loves you - you will be loved a story book. And if he hates you - you will feel like the world stopped. The only thing I did to spoil his plans was stop talking to him and NEVER EVER find out anything about life or him. And today- I ruined it by knowing something about him. After 2 years I failed. I wish I hadn't reminisced. Because ultimately this isn't about HIM as it is about me missing my life. My security, and yes-- what I thought was my husband.

You see - the day he asked for a divorce we had tickets to travel. He canceled them. We traveled frequently. To many places. I love to travel and miss it. I have many friends all over the globe and I miss them too. Some people I miss that I've never even met.

I LOVED MY BLUE HOUSE BETTER THAN HIS GIANT HOUSE THAT WAS NEVER TRULY MINE. And all those countries I have been to and all those countries I want to visit -- THEY WILL STILL BE THERE WHEN I AM ABLE!

I am envisioning teaching perhaps at a smaller school- perhaps even part time. Having a cute snug place. I envision my health working. And I envision my heart mending. There will be more gardens and beauty. And even pets. Sometimes we have to readjust to the life we didn't ask for. And plot a new course.

Finding Meaning versus Meaningful Life

2010-11-21T23:10:00.000-08:00

A brilliant woman tonight prompted me to consider the difference between living a meaningful life versus finding meaning in my life even through suffering. It is something for me to ponder this.

For her- she said, "I find no meaning in watching a child suffer." And I responded, "I don't think WE are supposed to find meaning in OTHER PEOPLE'S suffering. I think we are to find it in our own if we can."

We began a dialogue about the difference between living a meaningful life versus finding meaning...

And I wonder - truly wonder if we cannot do both. Or- if I do both. And sometimes maybe I feel like a failure when I don't think I'm not finding enough meaning. And really- I truly say I do not feel blessed to have illness though I do know MANY who say they do. I do however feel GRATEFUL every day of my life for more things than I say aloud. I'm bursting with gratitude sometimes even though I'm also quite sad sometimes too. And I'm aloud to have BOTH. Life is complex and contradictory.

And I believe it is HARMFUL to push the notion of blessings or meaning on other people. It puts pressure on other people that they should suddenly start making meaning out of horrific suffering when they are simply trying to survive. My goodness - surviving sometimes means numbing yourself and holding on to the log and putting one foot in front of the other and just being as kind as you can and doing no harm and breathing in and out and in and out. And sometimes that is all you can do for a while. Fuck meaning - sometimes surviving is about counting down between the next wave of pain and nausea. I've learned sometimes about riding the waves - and sometimes I'm better at it than others.

This is where I say "god" has infinite mercy-- sometimes we get to tolerate pain more- or we get used to pain. Or we shove the noise down. Or it becomes a louse fucking white noise static. Or we can just walk through it like walking on hot coals. If you keep walking and dont put your feet down you can keep going. And there is not time for "making meaning" during those times, but you can't sit around and judge it - JUST KEEP GOING. KEEP WALKING THROUGH THE FIRE!!!

Then, this woman began to discuss the survival strategies and how people who survived major traumas skipped the grief steps and moved straight to "survivors acceptance" of a new norm. And really- I think honestly- except for a few freak outs during my divorce or when I'm REALLY feeling like shit - I reach out to people when I REALLY need love - being "sick" was something I just skip and DOING SICK was something I refuse. She said she was inspired by this. And I think honestly, this encouraged me as well.

I see so many people DO SICK as a way to gain identity... and while I UNDERSTAND IT, IT IS NOT MY IDENTITY. I realize I have named my blog something sick... but it is because I am here as a patient with so many multiple autoimmunities I didn't know WHAT to say about it. Names are so bizarre when you're trying to come up with titles on the spot.

Meanwhile - I have so many pieces of me that when someone puts me on the SPOT I say, "I am a woman who loves and laughs." I just don't know where to begin- but being sick is NEVER how I identify myself UNLESS I am with other sick people or doctors or healthcare professionals or patient advocates. Who is me? Scholar, writer, comedian, thinker, geek, lover, ??? certainly NOT someone who sits around being a victim - NEVER - NOT EVER. NEVER. Never once in my life have I succumbed more than a day to victimhood.

Back to meaning... I have read many authors about finding gifts and meaning and blessings... and I suppose it is NOT MY JOB to determine who and when and where or how people find theirs or do not. I myself don't feel blessed by illness. I find it damaging to use such language as an expectation that others do - but FINE to use it as a personal experience. Lived experiences are lovely- but people should never tap their toes waiting for the angelic glowing patient.

I hear many families taking care of their relatives. Some are loud about it and some are private about it. Sickness is usually a private experience. Somehow being sick and doing sick is a hushed and private experience. Rarely do we ever praise caregivers or families who take care of their relatives. It is a duty but rarely one that we say thank you for. Such unpaid labor is expected- but the love and tenderness that goes into it NEEDS TO BE RECOGNIZED MORE. It is very touching to me when people are good and kind to me. THOSE are the gifts I receive from people who are kind to me.

I believe in finding the gift in the hit the way in martial arts if you take a blow and it knocks the wind out of you your master will say, "what is the gift in this hit?" And you will breath again. And then stand up. And you will rethink and realize that you did not have the right pose or the right posture or you were not standing wide enough... there are gifts in many "hits" in life. But again - these are not "blessings" so much as sometimes learning to say, "what is the gift in illness?" The "gift" might be unseen right now. I am finding many friends, colleagues, research interests, I am able to act as a patient advocate, I can seek out great medical care and call bullshit on bad BECAUSE I have navigated the system so long. These are not "blessings" but gifts in the hit.

People OFTEN call me or come to me for medical advice. They trust me for information on thyroid levels or what to do to help their thyroid, what to expect getting their picc line in, preparing for a colonoscopy, all sorts of medical procedures. And I can tell them many things. I am good at helping people navigate "scary" things like this better than their doctors or friends because I'VE BEEN THERE. Those are "gifts in the hit." I didn't ASK for them - but the hits came... the gift is in seeing the good that I can make from it. (aka living a meaningful life).

My family who gives to me or who do favors for me- who have reached out to me who have taken care of my needs or difficulties. My friends who have driven me to appointments or helped with food or laundry... my sweeties who used to come and snuggle with me or carry in my groceries in Atlanta-- THOSE PEOPLE are my fucking heroes. Those are my fucking gifts in this hit. Those are the people I feel are "blessings." Those are where I make meaning.

It is easy to count up the nameless immeasurable losses - so I won't. But trust me when I say- it MATTERS to me when people are kind to me. I NOTICE THE KINDNESS as though it is under a microscope because kindness is amplified when you're sick. And such times make MEANING FOR ME.

So yes - I suppose I am both living a meaningful life AND finding meaning (after the fact in most cases). I do NOT expect a sick person (especially newly diagnosed) - to run off to the stage and start being funny. Nor do I expect them to start counting blessings or finding ways to be grateful or make life count. But the fact of the matter is - NONE OF US GETS OFF HERE ALIVE.

Everyone's life is limited. If we are lucky we die peacefully and happily in our sleep surrounded by our great grandchildren. But most of us will face illness and untold suffering - and in that untold suffering most of us will learn to play the cards we are dealt.

I'm so glad I had to reflect on this. I'm still pondering. Maybe as I go through life more and see more and find walk through more fire- I will find even MORE meaning and ways to live a meaningful life.

Broken Everything

2010-11-19T21:27:00.000-08:00

Everything tonight is broken. It was last night too. I can't even put it all here b/c so much of it is so private. Just let me say that it involved me being a fucking idiot and loving too much and having too little self-esteem when it comes to how much I will tolerate. I often let others "win" when it comes to "battles."-- Just as - b/c i'm a fucking idiot- I will pick fights with ppl bc I cannot fuck them... and b/c I have a crush on them. I sublimate fighting or battles of wit for sex. And it is NOT fulfilling.

So I try not to. I have agreed not to do this with someone I care deeply about... but CLEARLY they do not care deeply about me. Bc tonight they asked me why I haven't chosen to change the world - why I teach, why I don't talk to "regular people" more often. As though I have no idea who regular people are or didn't grow up here. Or don't spend my life loving people for who they are. Or as a sociologist don't COMPLETELY dedicate my life to fighting inequalities so we are ALL regular people. As though I am somehow at fault for the gifts I was given- the only thing that worked half way right for me was my brain-- when it's not having seizures... And he wants me to apologize for it. Fuck me basically -- I can't even get this book written b/c the anti-seizure meds are making so fucking stupid - WHO THE FUCK CARES - I AM A FUCKING REGULAR PERSON. I am. Who is "regular" anyway.

And what is wrong with being in academia?? And FUCK ANYONE if they think teaching people who wish to learn is not a skill and FUCK THEM MORE if they think every single teacher who cares isn't changing lives one by one. That is so insulting. And yes - I hear it every day. TRUST ME. I've heard it more than once. And it continues to be insulting. (Those who can't- teach.) And research, and grant write, and write...... I KNOW, ivory tower... blah blah blah. I'm sorry I'm not a capitalist pig. FORGIVE ME for choosing to engage my skills where they were better suited. LOTS of people consider the ivory tower to be out of it. And it is. I have NEVER defended academia.

And then - I was told that I only talk to people who don't challenge me or make bold statements to people who think similarly. And I just have no answer to that. I just- I feel like he was picking a fight.

More happened I cannot discuss bc it is private... but the long and short is - I've re-lost what I thought was a friend. But I realize that you DONT really lose friends- if they are your friends - they will be tender and take care of your feelings and if they say hurtful things they will make it right with a phone call etc to set it right. Anyway- I'm hurting. Fuck.

I wanted one positive blog post. I just did. I'm sick of this shit.

For what it's worth - I said to him - I surround myself with people I consider MORE brilliant than me. If I challenge anyone - it is bc they are educated and articulate and powerful and can talk with me easily.

I didn't feel like going into any volunteer work I do or defending anything else I do. He is no friend. And that hurts deeply. I feel sad at the loss of a friend. Or the realization of loss. It hurts. Fuck. It hurts.

Mostly b/c today and all the last few weeks I've been so nauseated... and zofran ain't kickin it. The only relief I get is from acupuncture and frankly- I'm only ok for a few hours after... every med I take requires food... and I'm HUNGRY but nauseated. Is so jacked.

Anyway- I'm just cranky and want coddled and hugged and understood and NOT FOUGHT WITH by someone I want to love and understand me. I realize we can't have everything. A good friend once had fucked up experience and said, "How do you end a friendship in one sentence." And she was so hurt and betrayed. And I guess I'm feeling similarly. If you can't fall in love with me and love me - at least like me and be kind to me. Don't insult my life - which I have pieced together through illness and pain and divorce- through everything I've endured I want people to at least stand there and acknowledge my hard work. NOT INSULT ME AND HURT ME.

I am sad bc I will miss him and he clearly won't miss me. Plus- fuck. I wanted a good blog entry. I'm sorry. I feel like I'm failing you for posting drivel. Am I fired for being upset?

Leaning into the Sharp Edges

2010-11-13T10:41:00.000-08:00

Wow - I just sobbed today in therapy. I guess it is a good thing I didn't get rid of my therapist. You may wonder why I didn't and here is why... I often think people who grate on my nerves are teaching me something - so I stuck it through with her -- and the last two sessions have been POWERFUL. She is a very goading therapist. She often says things I don't want to hear and she pokes me in ways I do not appreciate being poked.

And it vexes me. But I am open to it because I am in therapy to HEAL. I need to be safe - but I also need to allow my woundedness to open and come out. I spend WAY TOO MUCH TIME sharing only what I WISH to share. And I spend way too much time formulating what stories to tell that will help OTHERS heal (like what I share here for instance are always about health but rarely about ALL MY OWN FUCKING SHIT).

And she will challenge me. And I thought - what happens if I sit through this. I haven't had a therapist do this before. What happens if I allow her to challenge me in this way? What if I don't accept that she is right - but I ALLOW this?

So - today- we talked a bit and then I allowed to to poke a few places and I told her the truth about a few things. And then I told her I don't pick up the phone when I am feeling my worst. And this last week I lie in bed a great deal and played on line... and when playing online got too much I just went to PT and did water therapy and then acupuncture and massage and did nothing. I rested.

I'm hurting. There are days when I cannot walk up the stairs. And she said, "Do you tell anyone how much pain you're in?" And I said no. And she said - do you ever tell your friends how much pain you're in? And I said NO.

And she said - WHY NOT? And I said- because I am stoic. And because WHAT'S THE POINT. Nothing bothers me more than listening to other people tell me how much pain they are in all the time. Telling people I hurt too much to walk up my own stairs for 30 minutes this morning will not make my body move better... that I had to sit and pet the cat and will my knees to bed and move and they finally did-- THAT DOES NOT MAKE IT BETTER.

People who live in pain - know pain AND doctors who listen to people whine about pain don't give a fuck and are compassion weary and pharmacists think everyone is a drug seeker. THAT'S why I don't talk about pain. And my therapist asked if I was on any pain meds and I said NO. And she asked why. And I told her I have too many friends waiting on new livers and b/c I'm on FIST FULLS OF PILLS - FIST FULLS and I have no desire to join the ranks of liver transplant patients. So I suffer and do my PT and I live in pain. Chronic pain is what it is.

But pool therapy is beginning to hurt more than anything - and not moving hurts and breathing hurts... I hurt. FINE OK. Saying it out loud DOES NOT MAKE ME FEEL BETTER. And she shook her head. I told her that pain is a habit that the brain gets into and that saying it only makes the pain louder. I am stoic. I eat pain. It is my life. I have multiple autoimmunities and I understand that there is not much that can be done. I am not on preds right now bc of another issue that is adding complexity to the situation and THAT is not helping either.

Meanwhile - she asked me why I don't answer the phone... she said, "Talking and listening to your friends might help." And I said - if I am feeling so low and down and sick - it might also drive them away. My control is limited and I try to spare my friends some of my weaker moments. And she goaded me. She said, "That doesn't sound very loving to me. - Where is your trust in others?"

And I burst.

Perhaps it is b/c my wedding anniv is upon me or b/c I am remembering my former improv team or my former good friend - but I just burst into sobs - real wracking sobs. And between them I shared with her what TRUSTING people to be your friends does.

I told her how I sucked up some pretty heavy treatments for MONTHS and continued to do improv and NO ONE knew I was sick. And one day I was having a VERY sick day and had to leave and vomit a few times. And I kept trying to be funny. I'd been with my team for a while and shown up and done improv on stage week after week - catching them time and again and allowing them to do the same for me. There is NOTHING more vulnerable than doing stage work with people. And I FINALLY told them the TRUTH of my illness. And I expected them to say, "You're fine, you're safe, we've got you." But they didn't. They said, "If you cannot show up and give 100% every night- don't come. Period.

That was right after my divorce and I'd lost a husband to illness... and then my good friend that I'd spent more and more time getting to know said, "I cannot be your friend b/c you might die and I cannot watch you die." And I said- "You're just having a trigger - why don't you take some time off and we'll do this together - I'm not dying you ass." But she didn't She dropped me too. Just like that. I lost my team and my friend and my husband all in a short amount of time for being vulnerable and sick and in need and not "hiding my most vulnerable spots."

It showed that during my weakest times it is best to let the phone ring rather than answer and say, "I'm in a bad place right now."

And I sobbed and said, "I cannot lose any more people to my illnesses. I need the people who keep calling me. I need them. I cannot lose anymore love. I cannot bear it. I have lost enough. I am overwhelming to people and they just don't know me well enough to run away. And I cannot fully share the weight of all my pain."

And my therapist cried too.

And for that I am fucking grateful. I needed her tears. SOMEONE NEEDS TO MOURN WITH ME THE LOSSES I HAVE HAD.

Because I have lost my entire life again and again due to illnesses I have not picked. And again and again I have picked up and carried on. But I bear wounds so great I dare not answer the phone with people I love the most me during my sickest hours even though they are the voices I want to comfort me the most.

In my heart I don't believe anyone will ever truly love me again. I don't believe I will have a husband or children. I believe this is the best I will have - a few phone calls on my better days- and when it gets too much - I will blow out my liver and my mind on as much pain meds as I can tolerate and stop feeling so much pain. But until them - I'm doing my best. I'M DOING MY BEST.

Because feeling pain is part of the human experience. I'm leaning into it.

VesselDoc doesn't believe in religion or god - but I do -- because there is no explanation for how or why there is so much human suffering. Only a god could have thought of such exquisite horrific unfathomable human pain without the antidote. And if I sound depressed - it is because I am. I am sad. I find it unfair. And I am don't think what I have experienced is at all loving or joyous though I take much joy in life - I am NOT happy right now. I am quite completely the opposite.

And THIS is why I don't write often. These are the thought that I have inside. I feel nothing but shame for them - because so often you write in to tell me to "be grateful" and that I should "stop mourning my losses." And I have dozens of things to have gratitude about. But I am also in pain and I am sharing that right now too. I have a right to tell you of the pain because I so often refrain the darker side here or anywhere.

And so it goes

2010-11-03T22:51:00.001-07:00

Thank you for your kindnesses. I am truly grateful. Right now I'm feeling safer than I was medically because I found an endo I trust and she's handling my tests and I'm getting an MRI in a few days and we're dealing with some of the complexities that I've been dealing with since I moved.

Part of finding a good doctor (in my case - several specialists) is finding someone who you can TRUST and also who you actually feel LIKES you. In my case, I'm a weirdo because I want someone who also hugs me at the end and I want to like the staff. I like to spoil them. Since I spend so much of my time at the doctor and specialists - I like to KNOW THEM and be good them. This is not be being fake- but me saying, "Thank you for taking care of me because I KNOW I'm difficult."

My rheum nurse has stopped the sun, moon, and stars for me and gotten me in on a day's notice before. Same as my neuro nurse. I love them. And when I go into their offices, I feel genuinely cared about. So now that I have found a good endo taking care of all my complex bullshit - I feel safer. And oddly- in feeling safer- I also feel like I can actually TALK again. Before I was just holding on - waiting- in silence.

These are observations of what it feels like to have so many specialists that sometimes I get more calls w/ tests results than I do from friends. And that can be a lonely place indeed. It is also why I make the effort to reach out so much. And why too, I do my best to understand how to be a better patient and what it takes for me to heal well. All these things help me stream line the process so I'm not adding to my own suffering.

So- that's a good thing.

I saw a video of a man I adore playing with this son today and my heart broke in my chest. I would never take away his family or his happiness. I just wonder about it. It is so strange to me how I never got the children I wanted and I wanted a family so much. I always thought I would be such a good mother. I really did. I wanted to be a mommy more than anything on the planet. Traditions and holidays and celebrations and cooking meals and love were always such a big deal to me.

But I know secrets about so many of my friends. Many of them are unhappy... they are not having sex or they are cheating on their spouses or suspect being cheated on, or they are unhappy in their relationships or are getting out of an abusive one. Some only stayed in it for their children. I know these things. So it makes it easier for me to deal with because I KNOW they are not all aglow with perfection. I know that everyone walks their own journey and we all have our own piles of shit to shovel.

I am missing *my* family - my children- my husband - the life I wanted. I'm allowed to miss this. I'm not ashing up my face or mourning it right now - but I am longing for it because I just saw someone playing and it made me yearn.

I had a similar feeling once when I helped a friend dye his daughters hair purple a few years ago. My heart just broke in my chest because I thought-- WHY am I dying your daughters hair purple? Why is she not MY daughter? Why are you not MY husband. It was brief and I was able to enjoy the process and the playfulness and her laughter and the silliness more. But I still had those pangs. Everytime a friend gets pregnant or I am a birth partner - I feel it. Everytime I knit baby booties or a blanket I feel it. Everytime someone has an abortion for a child I wanted I feel it even more. I'm not judging -I'm just FEELING IT.

And I know others feel it too. I'm not alone. Life is complex and strange and teaches us many things. My time right now is learning to heal and learning to be alone and learning what it is to have illness and to suffer and to reach out and to have joy in my life through it all. I know this. I know this and so I go on.

Feels are strange things. We are contradictory and complex beings. If I had my way I'd be healthy and in a snug house full of children and love and a garden and I'd be teaching and writing and loving and having wonderful regular satisfying sex with a husband who was my hero and we'd all volunteer on the weekends. I'm an idealist. I always have been. But life is never ideal. And so it goes.

And so it goes.

This Time Of Year

2010-10-29T22:37:00.000-07:00

It is such a sad time right now. Every year we'd carve pumpkins for the cats and dog... put candles in and have a big party. I have so many pictures of us laughing. It is hard not to reminisce too much but to remember that I am WALKING FORWARD NOT LOOKING BACK.

So much of my life is gone. So much of it is OVER. How can that be?

I have a friend who's husband lost his job and all but one daughter is off at uni. She's had to move to a smaller house and sell most of her possessions. They've lost most of everything in this time since her illness. It is so sad what loss and illness does.

Her husband is still with her - but they have lost what they KNOW of themselves - how they put themselves together. She wanted to stay in the same expensive neightborhood for the last 2 years of her daughter's highschool - so they are renting a place. Her other daughters will have to share a bedroom or sleep on the sofa. They had to sell their beautiful bed.

And it reminded me that my ex and I had a CUSTOM MADE BED. It was ridiculously expensive. And when I moved - there was no thought that I would take it because it was so large. And when I purchased my new bed - I did so frugally- because I am careful with money and wise. I knew that medical care would be expensive. And I knew that I am good with money. I knew I didn't NEED the things I used to have - custom things - and art. I also know- they exist. And I can have them again.

Meanwhile - my friend is selling her things and she is so sad. And I remember selling all my beautiful things - one by one - and to people I loved who coveted them and knew about them. And it brought me joy to know that someone wanted my dishes to complete a hard to complete set. Or have something they couldn't afford sold to them at a price they COULD AFFORD. It worked. And I was able to get rid of so many things from my ex and me- and wash it off me- yet still thrive.

But now is when it gets hard. My anniversary is coming up... The time when I think I MADE THE WORST DECISION OF MY LIFE. And there are stories that you don't know and I haven't shared... and I insist that sharing stories heals... but I'm so private - I keep these things to myself. And so I'm not healing the way I need to.

I told my therapist about it and she said the most hurtful thing. She said, "Well - that you chose a man like that says something about you, doesn't it." And it shattered me even more. Because it was so judging... I would NEVER SAY THAT TO A WOMAN WHO WAS COMING OUT OF HER SHELL AND STARTING TO HEAL. It makes me wonder why I am staying with this therapist... It feels abusive all over again. Perhaps I should start seeking a new therapist? I try hard NOT to compare what I had in Atlanta... but i have given her many tries over the last bit - and only twice have I come away and felt any HEALING OR SENSE OF CALM. Mostly I feel judged and truly bad about myself. I don't feel like I am making progress with her.

I need to heal. And if I share something that is vulnerable and negative and awful - I need to come away feeling a sense of HEALING IN IT. A sense of a wound opening and letting go. I do not. It made it more infected. And now I feel like I MADE SUCH A BAD DECISION AND IT WAS MY FAULT.

Sort of like we feel when we are chronically ill. ALWAYS BLAMED. ALWAYS WRONG. ALWAYS OUR FAULT.

It is a hard time of year. And I am attempting to correct it by going out and having a life. And living.

It is what I am doing.

On Margaret Atwood -Dr Snit Super Hero

2010-10-27T14:44:00.001-07:00

As you see- Joel Topf has written about how we "met" Margaret Atwood on twitter.

http://www.pbfluids.com/2010/10/celebrity-interaction-how-i-met.html

I'm completely thrilled and smitten with Ms Atwood. She has long been a favorite author. I'm completely humbled by her willingness to reach out to her fans and by her humanity and her sense of humor!

I credit "meeting" Ms Atwood entire on Dr Topf aka @kidney_boy as he was the one discussing dystopian gene-tech future sci-fi with me when Margaret Atwood appeared from the ether.

I'm in love with the Dr Snit AND Kidney Boy super hero designs. It means a great deal because of the work I do and see myself doing in the future and because of what Dr Topf does. People matter and lives matter. We are all precious.

And I'm very pleased that Margaret Atwood has continued to remain humble and gracious and in touch with all those things no matter how great her celebrity or extensive her fame.

Thank you.

Reflections on Danger and Beauty in Love

2010-10-18T23:10:00.000-07:00

Wisdom ceases to be wisdom when it becomes too proud to weep, too grave to laugh, and too selfful to seek other than itself. Khalil Gibran

A friend told me that he doesn't share himself fully with any single person and keeps them at arms length- because when he DOES share or has in the past- he has been taken advantage of. And I think we can al get that. I get it.

I have been thinking a great deal what was said between us... I remember chiding him a bit... telling him that vulnerability is part of life... but then I had a conversation last night with someone else. He does the some cancer work and palliative care. He's very cool. I adore him b/c he says his wife is his hero. Men like that MELT ME - to my core. He was saying that there is "danger and beauty in feeling." And how we could all share our beauty to make each other happy.

And this struck me too. So many people share gifts with me - they send me beautiful e-mails and letters. So many people send me special pieces of themselves. One woman sings to me and sends me mp3's on my e-mail. One sends me her stories on e-mail. Another sent me his manuscript to read... it is like a constant barrage of love- but it happens at JUST THE RIGHT TIME... when I am in my darkest moments... so when I feel the lights grow dim and my health failing - suddenly these little feathers of LOVE float me - FROM NO WHERE. I did NOTHING to earn this love. THEY HAPPEN. And I am always moved. Always.

Because this kind of generosity of spirit is WHY and HOW the world keeps in balance and how we DO NOT succumb to despair. It is how we continually move forward. I'm sure of it.

And I realized that I am very good at doing this on a BROAD level... online, on stage, classroom... you name it. If it involves one on one people- then it is FINE it if doesn't mean I have to become CLOSE for a very long time. Because inevitably it seems to fuck up... and somehow I always fear it is my fault - or because I fear I didn't make the effort - or if I had done better -it would have never happened... or if I had made better choices about getting involved with them in the first place etc etc etc. I mean -- it is so stupid... even during my divorce I felt, "If I hadn't been sick - he wouldn't have left me" -- EVEN THOUGH HE BROKE THE RULES-- I STILL BLAMED MYSELF. And I do. I always blame myself for not doing better at relationships.

Up until this last breakup- when someone said, "You don't give me enough attention" - even though I was giving PLENTY of attention... and that person was NOT listening to ME and asking about ME. That person wasn't CARING when I was crying or upset or afraid of MY HEALTH. That person used MY STOICISM against me - though it is part of who I am. And when I cracked and cried- they jabbed it in further instead of comforting me - when I wanted comforted the most... and THIS is what I fear. I fear there is no one out there. AND SO I TOO tend to avoid the REALLY PERSONAL STUFF. I'm terrified.

I do not run from the affection that SOME do. But I do hold back from TRUE ROMANTIC CONNECTION... and am ONLY NOW starting to understand how to do FRIENDSHIP... Being sick is so hard on friendships... it just is. Because relationships do seem to backfire. Yet- I yearn for it- I truly yearn for connection-- on both a friendship level and family level and marriage level. I want children and love and connection in all areas of my life.

If the heart and mind can conceive of it - then lots of people can. We just go about DOING IT differently. We have all been hurt in some way. Some of us more than others. There is healing for all of us- I truly believe this. I must. I MUST.

We all shield from pain. I guess we're all doing it- some more self-destructively than others. (Some by shooting up- others by being in abusive marriages, still others by just avoiding the situation).

We are all so complex and precious and beautiful. Life is. And yet- we are all so simple and sweet and easy to love if we are willing. And if there is to be change - we MUST be willing. WE MUST. It is on each person to start the change.

These are my self-reflections. Love IS beautiful and dangerous. My friend was right. I'm so glad we talked. I needed to hear it.

Know Thyself

2010-10-15T23:50:00.001-07:00

I've been having the hardest time writing lately. It is research I've been doing for 6 years and am intimately familiar with inside and out. I've interviewed and observed these participants - I know their story. I get them. I even LIKE some of them now that I've taken the time to UNDERSTAND THEM.

And in fact, I realize now - THAT is why I'm having a hard time writing. When I was married- I was writing like the wind. I flew off my fingers. I just got what I was doing. And then - when I was divorced and sick - I figured I was just taking time off... no biggie.

But recently- I really looked inside. I really looked - and despite my sadness and losses recently it is NOT explaining WHY I am having difficulty writing about THIS topic but no other topics. WHY?

And it hit me. This particular group of people are having their needs and desires met. They are socially and sexually deviant (to an extreme) but they are FUCKING HAPPY. They have finally met partners who are deviant with them. They have found a lid for their jar. They spent their whole lives yearning to find a match and now they have. They spent their entire lives wondering if they would be alone and have their strange needs never be met - and now their strange needs are being met... and they are HAPPY.

I do not know how much these strange needs being met fulfills them so that other emotional needs become less loud. I mean - I ASKED- but people say one thing and do another. And - when you have an itch that has needed scratched for a very long time - and someone soothes your itch- you are willing to make QUITE A FEW SACRIFICES to keep that person in your life - even if it is not a perfect match.

Who am I to judge... meanwhile - they profess bliss. (Even the ones who admit to being unhappy from time to time- show a happier and more fulfilled martial satisfaction scale than the general population).

The point is -- It hurts my heart. I'm undone when I try to write about it. Ok. I'M HURTING to write about it the way I am undone when I hear about how much people love their children and how much their children make them happy.

It brings me joy. It does!!! I'M SO HAPPY FOR OTHER PEOPLE'S HAPPINESS. But I miss having children. I DO. I always thought I was supposed to have a family. I am such an oddly normal and boring housewify person.

I am!

Yes I'm crazy too. But when I know something makes my partner happy - I do it! And I'm ridiculously tidy. It brings me joy to be domestic. Nothing ever made me happier than the domestic things I did with my husband. And though I LOVED my independence and my own friends and my own life-- I LOVED our life together more.

And quite frankly- I fear that I am so broken now that I will never have it or children. And - I think about the things that I USED TO WANT- and I still enjoy the thought of them. They are far off - perhaps not so NECESSARY - but I like how they feel to me.

For instance- while I never wanted a completely religious person - because I am not - I pray - and I've never had a religious partner. In fact- I've always had to pray alone. I always wanted one who prayed with me - or at the very least GOT IT WHEN I DID. Or went to high holy days with me- so I didn't have to go alone or with friends... I always wanted that. I hated feeling made fun of or childish for my faiths - because I do believe in miracles and love. I hated feeling silly for loving people instead of cynical or worldly. I suppose I gave up on it the way you give up on many dreams... if you don't have it you simply move on. I have nothing and no one now. So if you have someone who accepts you - you tuck that part of you away- or you do it alone.

But how much of me got tucked away and lost? Really? I tucked a great deal of Melissa away. I never got to talk about my professional self- because he was not interested - he only wanted a wife who cooked and gardened - and I did that SO WELL. I never got to talk about dying people - because that "depressed him" - those so many of them were SO BEAUTIFUL. I never got to explain the generosity of our money-- because it bothered him that I gave so much - though we were SO STUPIDLY WEALTHY.

And frankly- I never got to show him my weak parts - because I am so stoic - I never showed him my vulnerabilities. And when I NEEDED HIM - when I was sick - he broke the rules and left. Because when we are sick - WE ARE VULNERABLE. Even now I am still sick. And even now I struggle with opening up. I'm dealing so hard with balancing myself.

On one hand - how can I blame people for not accepting all of me - if I never SHOWED IT TO BEGIN WITH? And on the other- people grow and change - we do that! We should expect our partners to do that as well.

I'm working to be honest now- with people - some strangers and some people who are friends - so that when or if I ever do have a real partner again - they can see ME. And I can also have real boundaries and say, "I pray." "I am pluralistic and believe in many things." And if they do not accept me- or more - if they mock me or pat me on the head like a child -- I will know -THIS IS NOT FOR ME.

If someone doesn't allow me the time and space to be vulnerable - especially when I finally break through my walls - then I will know- they aren't getting me. And I will know for me- that I have am dealing - like SO MUCH OF WORLD- with "post relationship trauma." We can all heal from it. It is nothing new. But it IS my job to recognize when I begin to have fears or shut down because of what happened in the past. And it is my job to not allow other people to use me as THEIR crutch either.

So-- now that I recognize WHY I've been having difficulties writing-- it is time for me to finish this up. It is time! I must. I must!

That feels better!

2010-10-15T12:17:00.000-07:00

That was TOTALLY what I needed. Sometimes to really feel our feelings fully we have to FEEL THEM and process them and let them flow through us.

Anger is odd- I, like most women, have been taught not to BE or SHOW my anger. I've spent the better part of my life figuring out how to have and display anger in non-hostile, non-hurtful ways... but I still fail. I still succumb. Sometimes I am even overcome by it and wallow in fear or anger or despair.

But putting it down and sharing it and shining the light on it HELPED ME. It is lovely actually. Once you shine a light on the dark spaces they cannot hide and fester. It feels very cleansing. Like a wound left able to heal. I feel free again.

I need to stop hiding from writing when I'm in pain. Stoicism is for suckers.

ANGRY POST

2010-10-14T22:13:00.000-07:00

I've not written in a while. I've been in that place where nothing feels right to say. Unpleasant things have piled upon more unpleasant things and the entire week turned into a shit pie.

Deaths and pain and unkindness... even people breaking up with me - longterm friendships ruined over jealousies and some faltering from my breaking points. Finally Melissa just couldn't be her "sweet self"... when I snap or break- I want so badly for the other person to catch me. But it didn't happen. The other person on the receiving end just left.

Of course. Right.

"I'm hurting now. It is a dark time." Instead of kindness I received a litany of why and how I am nicer to everyone but them. Or give everyone more attention but them. I'm not giving THEM MORE ATTENTION. Really? REALLY????? You selfish ass.

It made it even harder for me to open up.

But I did. And finally a friend helped me cope.

And then some salt got rubbed in right away with a woman asking me not to talk to her partner. I found that so offensive. I'm still offended. I'm highly offended. That is between THEM. I hate when people put their shit on me. It makes me feel dirty. I feel unfairly caught in between THEIR romantic problems.

I would NEVER DO THAT - not to a STRANGER. And not to a friend. I just wouldn't.

Meanwhile - it is making me feel hurt and burdened where I go to play. I go to heal and be healed. I have seen so much unkindness -I have seen so much stupidity. I let it roll off my back and say, "I love people - I am here to love."

But the long and short is - Connections matter. They do. People matter. But when I am giving more than I am receiving and people begin HURTING ME NEEDLESSLY - it matters more.

My life is not what I want it to be. I am sick. I am tired. I am not where I want to be. Even my physical therapist worries and we cannot work out right. The Melissa that I present is one that maintains optimism because constant down is a hard pill to swallow.

BUT I AM DOWN QUITE A BIT. I am not always happy. My life is hard. I cry many tears. How can I do otherwise?? I am not a saint. I merely work hard at living my best life.

I do it the best I can - but I an no longer willing to tolerate what I consider boundary abuses. I don't like it when people use me for their own gain. I give love without expectation. I love people with a generous heart because love has come to me so many times in so many surprising ways. I find people uniquely beautiful.

But that does not make me immune to pain or depression or sadness or being hurt by assholes. And right now- I am not in a good place. In fact- I am in a ridiculously bad place.

There have been a few beautiful people who have been kind. And it makes it worse - because I have moved from a city I love filled with support and people I NKOW AND LOVE to a new city with people I DO NOT KNOW AND WHO DO NOT LOVE ME. Being sick makes it harder to make friends right now.

I am planning to go out and socialize.. find some poetry nights and spoken words, some comedy nights... but being upbeat and friendly- requires something - a certain attitude of FUN. I am also shy right now -- being sick had made me ugly- and going out makes insecure. I hate this because I am used to being pretty- very much so. But now I know I am not. I wish I were. It has given me so much humility to realize how ugly people must feel and fat people too. I realize the lesson in this. But it hurts still. It does. It is temporary - but it still hurts to walk in this body right now.

I have pain- in my heart. I am bearing it. I know it will go away. It will fade. The betrayals of people -I will forgive them. The people I love will lighten my heart. Life always brings me more joy than it does pain. Long ago I stopped questioning WHY life is so easy for some and so difficult for others. Because it is.

I have seen so much pain for people... and so much ease for others. It is surreal how spoiled some people are by their blessedly easy lives. Yet- every night when I pray- I pray that each person on earth receive ONE HOUR of pain free living - emotional, mental, physical-- all of it- gone - as a reminder of god's grace - and what we all deserve - what we are all working towards. An hour of reprieve to keep us going forward.

Without that hour I think we would all break.

I miss having a lover. I miss being loved. I miss many things. I am angry too - at many things. All these shenanigans of jealous lovers and people breaking up with me has brought it up for me. I am an honorable person. I do not cheat. I am not needlessly unkind. And mostly- even when you DESERVE for me to give you a knuckle sandwich - I usually do not.

My dark side can come through - but usually not NEARLY so cruel or mean or unkind as other people. And NOT NEARLY SO SELFISH. If I say, "I am hurting" - please do not send me a list of why I am not giving you enough attention - you fucking moron. Open your arms and say, "Let me hold you." YOU LOSE. FUCK YOU.

I am done. I have bled enough. It has been a long and difficult week. Stop being petty and jealous to me. I'm over. IT IS YOUR SHIT. The next jealous trifling bullshit I hear gets blocked instantly. I SWEAR IT TO BE TRUE. Handle your own shit. Do not put it on me. I AM ANGRY.

When We Are Not Broken - Surrender to Helplessness

2010-10-01T13:50:00.000-07:00

Went to therapy today. Talked about how sad I am about my cat being gone. How frustrating it is to have multiple illnesses. How angry I was at my endo for calling me, "cranky" right after discussing a PET scan... how afraid I am at the idea of yet another cancer after just going into remission... How lonely it is to have multiple illnesses because I pretend so much to be stoic. And to KNOW - really know - no doctor in the world wants to have me as a patient. So I spread myself out there to 11 specialists. All of them love me and I adore them. But NONE OF THEM know the reality of ME. Just a little tiny illness they treat.

And how I feel unknowable to most people - because most people only have ONE illness or maybe two. Or they are healthy- and have no fucking idea what it FEELS LIKE - they just intellectually understand how illness WORKS. I have no idea how to do sick any differently - so I just carry on. I live my best life. I volunteer, I do comedy. But it always white washes the REAL LOSSES that illness brings. My husband who just couldn't live with a sick wife. My job- though I love writing - TRULY DOING- is a loss, a great loss. I want to go back - I want to have hope.

Just like my illnesses are in their big picture- how they make up Melissa. And how overwhelming that feels. How going off one med will spark another illness to get worse... and going on another med will calm another down but make something else worse. Autoimmunities are fucking odd things. Cancers too. Getting shit into remission and calming them and loving on them and stilling the beasts are so strange. I still have one or two things out of control and I'm just sitting there - waiting for the next step... next step. Because I HAVE NO CONTROL.

And the therapist- a woman I don't really feel connected to usually, said, "I think you need to consider what "helpless means." She had me really look at my relationship with the word "Helpless" versus "leaving something alone." (The notion of surrender.)

I am a warrior. I RAGE at being restrained or being told NO. I have always been someone who shows up for myself, advocates, fights. I don't even trust my doctors to fully give a shit about me -- bc I KNOW I am overwhelming. I don't EXPECT to be cared about -- so *I* CARE ABOUT ME. I have learned over and over not to take it personally.

And suddenly- I got a flash of a baby lying there. I it hit me. Helpless is not a bad word. I have always seen it as SUCH a bad thing. So cloying and annoying- "the victim"... I have always hated helplessness. But this time- I realized - that I am truly helpless about some of the things that are going. And unlike the "bad things" about the word helpless I have always hated -- a baby is helpless and we love it. We nurture it. We take care of it. We do NOT despise it for inabilities.

Right now - so much of my life is dependent on other people to act, or simple my own body. I can do what I can. I go to PT, get massage, acupuncture, take my meds, eat a VERY healthy diet, do everything that aids and stabilizes autoimmunities and decreases risks... but I am helpless in some ways whilst I wait on tests and results. I have no control over where tumors are or how the effect they have on me. I am dependent on people to help me through this new medical labyrinth. I must trust them through this because it is a new diagnosis and I am not a "master" at this illness. It involves surgery and I will have to have a new surgeon - and trust them as well.

In that moment- I realized - I am already whole. I am not broken. I may be sick - but there is NOTHING TRULY ABOUT ME TO BE FIXED, only some things to be set right. I am here as I am. I am here to be loved and to love. And I cried - not sadly- but out of relief. I stopped hating my own body and my illness. I started having some compassion again - FOR ME.

I realized what she meant for getting to know the silence and having a relationship with my own helplessness. Yes-- sometimes if I'm doing the best I can -- things will just happen. And come what may. I am here the way I am - having a relationship with the parts of me that have long been ignored. For this I am sorry.

This is My Best Life - And Being Sick is STILL BULLSHIT

2010-09-25T14:13:00.001-07:00

Got a call today from a dear friend. She's a healthy friend, a true healer, a nurturer. Not sure why I feel so TRUSTING of her... like she'll never go away. But she didn't. I told her so many things that are going on... all this new medical news... crashing over me. She just listened - bearing witness, reminding me that a good friend will do that. Reminding me that I CAN TAKE THIS-- and that no matter what-- I DON'T NEED PEOPLE IN MY LIFE WHO CANNOT.

I've been down this road. I've lost hundreds of people because of illness. And I've gained hundreds more. It is why I am a public advocate. We can do illness well. We can live our best life. But there is a place for honesty and realness and living out loud. There is a place for fear and being upset with more news. There is a place for sharing our lives. I DON'T HAVE TO DO THIS ALONE. I don't.

Yesterday I saw me new doc (I've only seen her once before- but my family uses her- so it is a family relationship). She is not happy with the news either. She was like, "Oh - I don't want to send you to any private endos here - I want to send you to OSU... I HATE going to teaching schools. I never feel a sense of RELATIONSHIP there. I always feel so CLINICAL- like a number. I have 11 specialists. With each of them I have taken the time to BUILD A RELATIONSHIP. I feel like my doctors (all but my schmendo) CARE ABOUT ME. Meanwhile -- I have to deal with all this stuff...

And my doc said, "What we NEED is someone who KNOWS YOUR HEALTH INSIDE AND OUT." And I looked at her and said, "That would be ME. Every specialist knows SOMETHING about me- but only what THEY specialize in. But WHO wants to know ALL OF ME? It is overwhelming."

And she said, "You NEVER want to be the INTERESTING PATIENT Melissa." And I said, "I hate this. I struggle against it. I have fought my whole life not to be sick - not to be noticed except when I am successful. I know how much people HATE chronically ill people. I know how much the SICK ARE HATED."

"Right now there is a tidal wave crashing over me. I know if I hag on - it will recede. I will make it. I will."

She just sat there. Neither of us has any answers. I am so stupidly over this. There are so many complications... it is probably simple but it doesn't feel like it. I have to go off x med for x reason for x amount of time. But it complicates y disease. Which in turn flares z. The move and the death of my cat then caused more stress- flaring up more... it is quite simple... and yet-- complex in it is own way.

And I HAVE NO ADVOCATES BUT ME. No one cares about me MEDICALLY. I am on my own. I always have been. I pull it together.

One friend said, "God- you are so stoic." And I said "yes - I must be. How else will I get anyone to listen to me. I CANNOT BE A CRAZY WOMAN. They write off crying crazy women."

Even yesterday- my doctor yelled at me b/c I had a negative interaction w/ a PT and chose to go to a different one. I explained what happened and she backed down... but I DO NOT WISH to be misjudged so soon in our relationship. And WHAT A FUCKING SMALL DOWN-- where a PT can come and tattle on me - b/c he was mad?? HE WAS A DICK. FUCK HIM. I don't HAVE to go to him. She didn't even write the rx. FUCK. HIM. Really.

She actually apologized for jumping to conclusions. And I just chilled. But my heart was so angry that I even needed to deal with multiple layers of small Ohio town bullshit to get my healthcare served. It made me miss Atlanta more. I MISS ATLANTA if only bc if you chose not to go to PT w/ soeone - NO ONE GIVES A FUCK. You just move on. The PT doesn't walk next door and hassle your doc about it.

And also - b/c I had a 12 year relationship w/ my doctor... WHO HUGGED ME. I miss being hugged by people who LIKE ME. Even if I don't think they understand all my healthcare stuff. She at least knew good docs and she knew where I could go and who I could trust. And-- she knew I'm partial to non-assholes. Which sounds funny - but old white hubris men DO NOT WORK FOR ME. And she is a black woman in the US WITH CHILDREN... so SHE GOT IT. She had to make her way through med school WITH ALL THE HUBRIS it involved... there was a knowing there when I said, "Don't send me to any assholes"-- she got it. I clicked with everyone she referred me to -- even though I never needed a referral on my insurance -- I was never RUNNING BLIND.

Here in Ohio -- I'm being sent to OSU... I'll have to keep an open mind I suppose... Hopefully there will be docs with hearts and not clinical hubris... we'll see.

Besides... I'm tired. This is part of it. Where you feel like people will abandon you. THIS IS PART OF BEING CHRONICALLY ILL. Where more diagnoses come in - when you don't want them...

I never dreamed this would be my life. Most of us didn't. I struggle with jealousy for people who either die or have re-entry -- because they can MOVE ON. I even struggle with people who only have ONE DISEASE... b/c they can control it... I know how unfair that seems. One friend who is a doc said, "Melissa - stop calling yourself a zebra- all zebras have stripes- you're like a purple zebra with a mohawk." That cracked me up... but it also made me secretly sad. I DON'T WANT TO BE THIS.

Deep in my heart - if you pull away the loud crazy Melissa- the one who gets on stage or does loud crazy things... there is the woman who is very calm and almost boring. There is one who can even be shy. Deep in my heart - there is a woman who likes to garden and putter and be still. She DOES NOT want to be a purple zebra with many stripes and a mohawk. How hard it is to swallow back anger at god for giving this to me. I DID NOT WANT IT OR ASK FOR IT. And quite frankly - I don't know what to do with it now.

I'm angry. I'm overwhelmed. And I feel afraid. THIS IS BULLSHIT. And yet-- I carry on anyway...

Firing Doctor Shitheel

2010-09-23T16:43:00.000-07:00

I'm torn - part of me wants to completely melt down and part of me wants to rationally discuss firing a doctor who has lost your trust.

The melting down person wants to vent because it has been a rough week... and my endo has been walking that fine line of schmuck-ti-tude for the last few.. and I THOUGHT we had made a breakthrough last visit.... but today he missed a phone consult with me... just missed it. I paid for it- he missed it. It happens... but I called them. He then proceeded to give me NOTHING but shit news and horrific things - and "this could be doctor talk med speak more doctor talk fancy names for tests I've never heard of PET scan CT scan BUT I WANT TO WAIT AND DO MORE TESTS" (because I'm not you- b/c I have no idea what chemo feels like??? b/c I AM SCHMUCK??? -- b/c I'm a shitty paternalistic doctor??? BECAUSE I'VE LOST YOUR TRUST???)

MEANWHILE-- I'm upset. This is NOT what I was expecting? I was expecting bad news- but not REALLY bad news? I started crying. Yes I did. OK. I'm not a fucking machine. I can suck it up and be stoic for only so long. I WANT some good fucking news ok. Or some neutral news.

I cried. And he said, "You're being mighty cranky today."

YES. HE. DID.

I said to him, "And you're being mighty heartless given the news you're handing me."

He said, "I don't have to take that from you." And I said, "NEITHER DO I."

We are at impasse.

I need a new endo.

I wish it had come sooner. I wish I had not tried so hard to make a relationship with him.... I thought he was trying to be a good doctor... Instead - I guess he was covering over burnout and shitheel-ness.

Onward. I have to call for some referrals to some good endo's here in Ohio tomorrow. I don't know any up here. Maybe this will help me get to the bottom of it. I'm also going to have all my medical charts sent up here.

IT IS TIME.

Oh and - firing your doctor is pretty easy. All you say is, "You don't have to take your bad day out on me - You get PAID to do YOUR JOB but it should be your calling anyway. I no longer TRUST YOU."

Meanwhile - I will tell my new endo that it was simply too difficult to manage having a specialist out of state when I'm dealing with an ongoing health issue... I don't want to have a "reputation" as a difficult patient. It is all in how you present yourself. I want the chance to build a strong relationship with a new doctor. Doctor shopping = bad. Firing a jerk = necessary.

I am looking forward to this particular process being OVER.

My Little Grey Man Cat

2010-09-18T09:09:00.001-07:00

My little grey cat is gone. I am in mourning. He took my laugh with him. And all my snuggles. God may not be dead - but my heart is right now.

The Social Contract - A Reply

2010-09-13T02:02:00.000-07:00

I am responding mostly to this blog post on social contracts by RichmondDoc: I have included links to the other 2 blogs I have made comments on because they have to do with doctors discussing "patient responsibility" but have not mentioned either social structure NOR have they discussed doctor responsibilities or civic duty to help or make things better....

http://richmonddoc.blogspot.com/2010/09/social-contract.html

http://33charts.com/2010/09/heavies-to-the-left.html

http://drjohnm.blogspot.com/2010/09/lesson-from-checkout.html

POINTS OF NOTE:

Here in the US (as in many parts of the world)

1) WE HAVE UNEQUAL ACCESS TO LIFE CHANCES

2) Culturally we do one thing and say another... that is we blame people who do not have the equal access and pretend it is up to them to secure footing instead of all chipping in to make things right.

3) When we all chip in things work better and we collectively feel good.

4) SOCIAL STRUCTURES IMPEDE PROGRESS TO EQUALITY.

5) Inequality is rampant and anyone who says otherwise is part of the problem.

6) Doctors and medicine are part of THIS CULTURE and CREATED MEDICINE.

7) This culture is as broken as the people we try to fix.... it is a loop... WE NEED TO FIND A WAY TO STOP THE ENDLESS BROKEN CYCLE.-- WE NEED A SOLUTION.

I agree heartily with the notion of duty, responsibility, giving our best selves to each other. I am a proponent of living our best lives.

Research indicates if you take a poor child and put them into a wealthy or middle class household/neighborhood they eat fine, they do fine, they act just like you would expect. And similarly, if you take away the positive circumstances and hope and leave someone with nothing, they act just like we know...

WHAT YOU NEED STRUCTURALLY FOR SUCCESSFUL PEOPLE:

School systems, housing, jobs, healthcare, income, education, access to good food, ability and time to prepare good food, childcare, stress reduction, exercise, dental care, animal care, elder care, job training, relationship help, diversity training, and all the many different things that are necessary but I may be forgetting because I'm blogging...

Simple positive things that most people forget but are nice and rich people get them ALL THE TIME -- massages, lovely and beautiful things we take for granted - like art treks, nature walks, pools, massages, tea time, sports lessons, foreign language lessons, travel abroad, VACATIONS, cultural awareness.... -- where do things like this come in? When does this happen? How do we schedule it economically or time wise? It is important yes-- how do we schedule it in to enhance people?

Too often I have seen JUDGING of individuals rather than SOLUTIONS offered or given.

I have used obesity as a main thing but we could just as easily not use illness... I could just as easily talk about ANY INEQUALITY. However, HEALTH is a primary indicator of a QUALITY OF LIFE. Quality of life is an indicator of how well we do as a nation - how well we do at providing for each other. We in the U.S. are a FIRST WORLD NATION. Highly educated and with TOP NOTCH HEALTH CARE. Yet - it is only given to certain individuals who can pay for it.

The poor or uninsured use ER's or have inferior quality access to healthcare. They have providers who do not care or will not grant them the same quality. They use state or county clinics and are farmed like animals. The health providers who work there might have hearts of platinum- but the rules and regulations behind those places ensure that the most old and pathetic stay in charge while the people who WANT to be doing the good work are squelched.

I have heard too many stories to think other wise. I have seen too many monstrosities. I have seen too many excellent doctors who care QUIT SUCH JOBS because nothing could be done about the incompetent fucks who should have retired years ago were still trying to kill off their patients. I have been a patient for too long to believe that I am anything but better off without the KICK ASS INSURANCE upon which I pay my ENORMOUS PREMIUMS and live in fear the day it goes away...

Back to this social contract-- we have a "social contract" by which physicians are supposedly living. But it cannot work - because society is living in with multiple different broken contracts depending on which class or strata we live in (rich, poor, middle class, religiously mandated, racially profiled). Some people get the good ones and some get the jacked ones. And any given day some people will believe the social contract being positively fulfilled and some will feel cheated.

I'm saying -- YES- we all have a duty- a humanity to serve... but the social contract between human life is precious and powerful. We are all alive. We are all patients. We are all together in this. But the inequality and social structures have jacked our chances to have a REAL vialbe social contract that works each time. And that makes everyone feel cheated...

There is no such thing as a better or worse profession... or one MORE or LESS noble... yet SERVING EACH OTHER and BLESSING EACH OTHER and TAKING CARE OF EACH OTHER is the ONLY THING we can do. We forget that. When we start taking care of each other - maybe we'll fix the system from the inside out. MAYBE. Until then the repeating broken loop will continue and nothing will ever be righted.

Stop feeling taken advantage of and start pushing up our sleeves and working our best. There will always be harder workers and lazier sorts, sicker and healthier. But until we stop looking at who does what and who gets credit and start digging in for the SOLUTION - nothing will ever be fixed.

We deserve to live in a better society. We deserve to live our best lives. If we all agree on JUST ONE SOCIAL CONTRACT it will be a good start.

A Post of Gratitude

2010-09-07T00:06:00.000-07:00

I am often astounded and amazed by the love and compassion of my friends. You amaze me. You do.

Death is all around us. It is. Illness too. And pain. Yet you continue to bless and inspire me.

Thank you for holding me so much during this awful week. Thank you for giving me so many words of love and compassion when I needed you the most.

I feel you so much right now. Some of you are hurting deeply. Some of you are tired. Some of you are weary from the fight. Some need support right now. I want to scoop so many of you up and hold you so tightly. Others I wish I could tell SHUT THE FUCK UP AND KEEP FIGHTING FOR YOURSELF- YOU'RE BEING FAR TOO SOFT -- YOU OWE THIS TO YOURSELF! Still others I want to congratulate and coo over. You have won so many battles.

Some of you amaze me with your beauty, your kindness, your compassion. I'm so awestruck at you. TRULY AWESTRUCK.

And yes- some of you have taken the time to reach out to me and share your stories-- to tell me your pain, your joys, to GIVE ME YOU. And I am grateful. When I have been down you have said to me, "I will keep you -- I see you too Melissa -- I am your friend, your family-- I will you hold you too." AND THIS HAS MEANT THE WORLD TO ME.

I am forever grateful. I have needed this. It has sustained me. I am ready to go on now. I am blessed by you. Grateful for you. IT IS TIME. We have work to do. LET US DO IT.

I adore you. Thank you for being in my life.

On Fire - I Knew- I Knew

2010-09-01T19:00:00.000-07:00

What has always struck me- no matter how often this happens - I KNOW what is happening inside my body.

I will tell a doctor - "This body part is sick, this organ is failing, this is happening." I know it irritates them because THEY ARE THE SPECIALIST - BUT I live inside my body. I KNOW MY BODY. I see it, I dream it, I live it, I know it. I taste it. I know my fucking body.

Last time I was here I told my endo what was happening - in 4 sentences I had written down on a post-it note. He didn't look at me. He ignored me. I crushed me. My blood came back -and today- he was kind, empathetic, sweet, WITH ME. He looked into my eyes. He talked with me. He joked about not listening last time and even plugged his ears and said, "I am afraid that people spend the better part of our time NOT LISTENING TO YOU dont we."

I just looked at him... I smiled but it was hard because I knew. I KNEW - he found not just one or two BUT ALL FOUR.

I mean REALLY. Those were just FEARS. I don't want them. I DON'T WANT THEM.

He is refusing to treat me for any weight or sugar or even put me on metformin because those are secondary and if we correct for the primary and master issues the rest will settle. I get it. I also get a sense of relief that I am right - because I am always right. I also get a sense of failure, dread, pain, and BEING OVER IT. How much?

I pulled over today and put my head down. I SURRENDER. I DO NOT WISH TO BE SICK and -- I'VE GOT IT DOWN. I am already doing it-- I don't need ANY MORE ILLNESSES. Really. I'm done. It is worse when a distant doctor becomes nicer because they realise that NOW IS IT. I was already doing team -- and now he is too. I GET IT-- LET'S GO. I get on the general level HOW IT IS DONE. I've been doing it. I know how to show up- be my own champion - I GET IT.

But really?
Really?

Again?
This is done.
I'm over it.

I just heard a friend today tell me the same thing. She's tired. I held her through it. But I am saying the same thing. At some point- ENOUGH.
Enough.

Enough.

There is a voice whispering to me -"All you have to do is stop your treatments and it will all be over in no time flat." And a louder voice - more resiliant saying, "NO- YOU ARE HERE FOR A PURPOSE- YOUR RESPONSIBILITY IS TO LIVE YOUR BEST LIFE- NOW- SHOW UP- LIVE WELL. THIS IS ALMOST OVER."

I can do this. I am in my liminal phase. It feels uncomfortable. I will make it happen. All I have to say is -- I DON'T DO ANYTHING IN A SMALL WAY - not healthy, not wealthy, no poverty, no sickness - not happy, not love, and not fucking healing. I WILL HEAL. I WILL.

But right now- is 2 more days- 2-3 visits... I must keep going. Full days.. more news... more repeats... I need to keep going. But today was "the day." I saw it coming. I knew it. I KNEW IT.

I just wish I wasn't so shocked when other people confirm my own knowing. I'm always right. Why then did I just want him to look at me and say, "You're the picture of health - stop whining." I'll tell you why-- because it would have been one less thing.... one. less. thing.

Healing is a process - and part of it is that sometimes when you're walking through the fire you're still burning as you go.

Thank you for Holding Space for Me

2010-08-30T16:15:00.000-07:00

Sometimes as outgoing and extroverted as I am - my life shuts down. I do it when people I love are dying around me -when the people I love are getting sicker and I cannot stop it. I do it it when I'm going to Atlanta and I feel nervous because I'm seeing my specialists and NOTHING I do or not do will change the results of my tests... and I'm NOT as sick as I was but I'm NOT as good as I want to be.

I want held - and I have no one to do it. I realize after sharing with someone who invited me to share -- the someone who REALLY wants held is the young girl who watched her grandmother die of a brain tumor... Through all the chemo and radiation and suffering... and hospice... she died in bedroom and I watched it. And I watched the circus surrounding death... how we give death something bigger and less significant than it is due... and I don't want to get into it here -- because that is private to me and I am still dealing with the results of not having space for it as a child. Because really - death is beautiful and not frightening. And I would PREFER to go surrounded by people I love and who love me. But that young girl is in need of more than I realized.

Because at the time - I was confused that I could not save my grandmother. And I was afraid for her and me both because I FELT HER PAIN. I knew her fear. I was always a child "who got it." Old people would always talk to me... "You're so wise child - you're so funny." People always said that to me... And I was both outgoing and well known - but not "popular" the way cool kids were. I never picked on people. I was OK with myself but I was insecure too -- just like everyone else. We all live contradictory lives. I still do. I'm still a liar and the most honest person... I get it. I wear masks and I tell the truth. I get it. Watching people die CUTS INSIDE WHEN NO ONE IS THERE TO TEACH YOU HOW TO LET GO.

I have a child inside me now who NEEDS TOUCHED more than the adult. And I finally got it- when someone said, "Share - I GOT IT." And I shared for the first time that story-- and it did - it poured out of me... but to what end now I realize - when I do finally get my massages I must let the child be touched and healed - all those times when I was afraid and REALIZED THAT DEATH CANNOT BE FOUGHT BUT MUST BE SURRENDERED TO-- Now - I must hold HER and explain TO HER... because no one ever did.

And now -- in my own fear -- I must also tell her that I am not afraid of dying -- I am afraid of BEING SICK - of doing sick. Of whining - of doing it wrong. Of being angry and bitter and losing friends... I am afraid of not getting out of bed. I am afraid of not having words. I am AFRAID OF LOSING MYSELF AGAIN AND AGAIN.

I have to share that with her -- because she has been stuck losing her grandmother and then watching her dad get sick. It has been terrifying. And I must show up for her and BE MY OWN HERO. And Yes - I hate it. I hate that I have no reciprocity right now. I hate that I am stuck in this liminal stage - the doorstep where my body figures out what it wants - "Shall I die or shall I live?"... I HATE THIS. I do. I hate it.

And I am telling my body, "YOU SHALL LIVE - YOU SHALL LIVE." But sometimes -- our bodies make surprising results out of our visualizations and our actions. And sometimes surrender is easier.

And so I am asking my dear friends to hold space for me - because I know they will. They get it. I have no one to HOLD ME -- but THEY WILL HOLD MY SPACE. They will light candles and they will pray and they will LOVE ME. And sometimes that is enough. I will NOT PANIC. I will simply BE. I will be here. I will ALLOW. I will surrender to this.

Economically I have made this choice to have less right now. I have made this choice to live here right now. I have made choices to and I have had many of my choices TAKEN AWAY. And right now - I am surrendering and allowing and letting SPACE be held for me. And I will allow my HEALTH to be in the space. I allow my emotions to flow through the space. And I allow the people WHO LOVE ME to bear witness.

And all the rest - they can come and go as they will. They have no meaning in my life - they are peripheral. Perhaps we teach and learn together - but I cannot do more or less than what I do for ME right now.

No struggles - surrender. Holding space. Living. Loving. Sharing. I need you right now. And I am grateful for those who are here. I am grateful to those of you who do this for me. And I know I shall be back to do the same. We get it. Life goes on. And death too when it takes us.

The leaves fall from the trees. And everyone panics. The trees- they are dying what now? But sometimes deep underground the trees talk to themselves during the winter when no one can hear. Whispering and healing each other. Even the frost bitten limbs are ready. Spring comes. They bloom! Some even have pink blooms. PINK BLOOMS! I may have pink blooms yet. Hold the space for me. Light candles. Love me.

I'm doing my best... I've got a week of rough stuff doing what I don't wish to get done what I need... pink blooms even might happen.

25 happy/unique/ random things about Me

2010-08-22T00:12:00.000-07:00

On Twitter - a fellow poster @Poshmd tired of reading me moaning on my blog and challenged me... by saying, "I would love to know 25 **happy/unique/ random things** about @DrSnit"

So - here they are:

☙ I am a hockey fan. My favorite NHL teams are the Chicago Blackhawks and the Pittsburgh Penguins. I also enjoy watching minor league hockey and have watched hockey since I was a little girl. My dad said that when I was quite young he knew I would be a fan when he took me to a game and I screamed, “KICK HIS ASS.” I played hockey until I was no longer able - even in the beer leagues in Atlanta. SO. MUCH. FUNS! YAY! HOCKY.

☙ I do standup and long and short form improvisation. I love doing it and am probably only average at it – but here again – PASSION BEATS GOOD. Being in love with it and LISTENING to your scene partners matters more than being FUNNY or GOOD. Humor is about PEOPLE and REAL LIFE. I regularly volunteer at children’s hospitals and nursing homes doing my schtick. Kids are WAY better audience members than paying adults and more fun.

☙ I love to boat and sail (have certifications even!) and grew up on the water. I feel at home on the water. My heart is at peace here. Water is nature’s way of holding you – like you are being held in palm of God. Once when I was floating on the water as a young child I heard a Bach song – and I still hear it now every single time I’m on any water vessel. The metaphor for sale boats is this – if you are so in over your head and the weather is CRAZY cannot figure out what to do – you just let go of the tiller and the boat will round up in the wind and just float. It is THE PERFECT METAPHOR FOR SURRENDER. Just let go and let life hold you. Then, you grab your wits, gather shit back up, haul in your lines, and get the hell out of dodge into safe port till the storm passes.

☙ I love being in forests and mountains. I love sitting in hot springs. I love hiking – day hikes only (do not carry heavy things on my back or poop in the woods thanks). Nothing makes me more calm or energetically connected than redwood forests in California and lying on old ground and gaining energy from the earth. My greatest memories come from lying on the ground in the Redwoods soaking up the energy of the earth. Wisdom and peace and calm and direction came from those forests. I needed that.

☙ CITIES I WOULD LIVE IN OR LOVE: Toronto is the most beautiful city, followed by Sorrento, Italy, the Tuscan area of Italy, Auckland, NZ., and San Fran. These are places I would live in or love. Many more I need to see again or have called to me.

☙ I have done yoga, tai chi, pilates, and various martial arts since I was 18. My favorite is forms and least favorite thing to do is sparring. I enjoyed stick fighting though and only just gave away my fighting sticks because I thought it was bad ass to smack people around with them in slow motion.

☙My undergrads were English (Medieval Brit lit) and psych. Minor political sociology. I started my undergraduate studies when I was 16. Favorites to read were Beowulf and Chaucer, loved all Icelandic authors, The Book of Good Love.

☙The first teacher who ever realized I was civilly disobedient was my 6^th grade teacher. She gave everyone parting gifts before the end of the year. My gift was a little white picket sign made out of a popsicle stick and a piece of white cardboard marked, “UNFAIR.” On the back she wrote, “May you always fight the good fights Melissa and pick your battles well. I appreciate your spirit.” Not all teachers did. I still fight that fight. I am grateful she saw that in me. It is to this day my most precious gift.

☙I love the word FUCK! I love all curse words because language is power and we use power to control people. And I hate all forms of controlling other people’s right to be free. CURSING IS THE EASIEST WAY TO FUCK PATERNIALISM, PATRIARCHY, AND POWER UP THE ASS. Boom. Fuck it. Fuckity fuck. Fuck. Look at me –I’m cussin. Look at my dirty whore mouth!!! Look at my highly educated dirty whore mouth throwing away all my classist bullshittery. Haha!

☙I met one of my best friends on an airplane. I hate talking on airplanes. I usually read. She hates talking on airplanes. She usually reads. She’s a hot fucking dyke. I love hot dykes. I was reading some spiritual book about the Dalai Lama. She looked over and inquired. A two hour conversation and a 12 year friendship ensued. We both moved from Ohio to Atlanta within a month of each other.

☙Once went on a date with an ex con… He had TWO master’s degrees and was very well spoken. We made it ALL THE WAY through dinner and then my “wait a minute wtf dar” went off. Yes – not even a good kind of con – like Martha Stewart where ya do the crime, pay the time and move on. No no – this was massive stalking, sex offender shit. I was like – HOW DID HE SLIP PAST MY FILTER! Now, before I go on any first dates I have to say, “Are you married? Are you an ex-con?”

☙I have more Godzilla and comic-book t-shirts than there are days of the month. This probably speaks very questionably of my ability to dress up but I HAVE paired them with skirts and sassy shoes before.

☙I became mostly vegetarian at the age of 12 when I saw three gutted deers hanging from the rafters of my uncle’s garage dripping blood from their open necks onto newspaper on the dirt floor. Also- having known pathologists and looking through their microscopes at human flesh and realizing our cells look just like all animal cells gave me heebie geebies. I felt like a cannibal. Though now and again I do eat meat – and I do not apologize – because I became one not for political reasons – even though I AGREE with the political reasons – but because it hit my guts that I WANTED to stop eating it. And so when I WANT to eat meat – I DO. MY CHOICE MY BODY MY EATING HABITS. Nothing worse than moralistic vegetarians/vegans.

☙ I LOVE to garden. Nothing makes me happier than being out in one. I love planting and planning and knowing how everything will turn out. I love flowers. I love it. I have had master gardeners ask me who planned MY GARDEN. I feel so at peace when I am still and with my hands in the dirt. Life is calmer when I am gardening. All living things thrive in my garden - and when they do not - I simply say- OK- this spot is not for you- we will try some place else. METAPHOR FOR LIFE. We don't always belong somewhere but that doesn't make us wrong. It means the spot is not right FOR US. Dig it up and put it in shade or more sun. Give it more or less water - IT THRIVES. It is rarely the plants fault - It is often the spot or neglect - not the plant that is a "problem" -- well tended plants THRIVE! Just as well tended people in the right places do. -- I am at peace in my garden. It is as though all the world says, “Here you are grounded and you are safe. Here you are part of something bigger than yourself.”

☙ The first time I knew I was a “healer” of some sort was when I watched a hockey teammate break his ankle and I had the intense desire to put my hands on his leg and “fix it.” I knew that if only I could touch him I could make him feel better. I fought the urge because everyone would think I was nuts AND because it was my shift. By the time I was back in the locker room he was at the hospital. But from that day I always felt that my presence MATTERED to people – physically and emotionally. I have since learned that my COMPASSION and NURTURING are just as powerful as my PHYSICAL TOUCH… but I am still a very touch centered person. People are afraid of TOUCH more than they are of any thing else. I now touch people with my WORDS – MY HONESTY- MY COMPASSION- MY LOVE as best I can. It is up to them to accept or decline.

☙ I love sci-fi, Joss Whedon, most B-monster movies, zombie movies, GODZILLA, every kung-fu movie ever made, Dr. Who (but Torchwood was better), and vampire shit (unless they sparkle- and then your own).

☙ I love board games – especially multi-player against the board. I THROW TWENTY SIDED BABY. I’m bad at strategy games, have more passion than skill – so suck it. I LOVE IT ANYWAY. Yes. I play D&D when I can. Dragonborn. He serves the the Raven Queen who is DEATH, carries a scythe, wears black, has the mark of the blue raven, is NEUTRAL, neither evil or good, is +strength and wisdom, terrible at spells, and uses up 3 squares in front of him to kill – so he even kills his own teammates standing front of him during his dragon fury. He has cold killing breath so I named him silver killing breath in dragonish -Argonthon.

☙I LARP. (live action role player). Vampire larp. Dress up, make your character. Have fun. I know – but I enjoyed it. My character is a 1920’s French knife thrower who grew up in Paris, transitioned mid-century wearing outfits of same kind, and is involved heavily with finances and is also a powerful mind reader w/ clairvoyance. Powerful clan, ambitious business oriented, heavily into staying alive through financial gain of other vampires. Part of the proud Ventru line. Named -Clara.

☙Grew up playing a Midwestern card game called Eucre. My grandfather taught me. Words like, “HORSE SHIT YOU DON’T THROW THE GODDAMNED LEFT BOWER UNLESS YOU HAVE THE RIGHT AND YOU NEVER LEAD WITH THE ACE IF YOU HAVE THE MATCH PAIR- GODDAMNIT – PLAYING WITH YOU IS LIKE PLAYING WITH BOX OF ROCKS.” I learned fast. I am a good Eucre player. For that reason I cannot abide Bridge – it is too civilized. I do enjoy other card games but Nothing. Beats. Eucre.

☙I don’t gamble because I am a LOW RISK TOLERANCE PERSON. Which is why I am a terrible strategist. INDEED- The reason all my characters in above mentioned D&D games or larping are always STRENGTH or wisdom is b/c I will just go blow shit up and kill everyone. You can all go clean up after me. I have learned you must either be skilled OR NOT BE AFRAID TO DIE in such games. I – have ladyballs. More than most men. I AM A SIGHT TO BEHOLD. Let’s play. GO BIG OR GO HOME.

☙I love spoken word and performed it and listen to it and love it. My first spoken word experience was Lydia Lunch – “dear whores – fuck you – fuck off and die you filthy fucking prostitutes, ok… focus on a pin prick…” Yah—it stuck with me how powerful WORDS could be… I became involved with it in Atlanta with a group called Cliterati. And I love slam performances. I am in awe of what people can do to and with the spoken word. CRAZY.

☙I got my first acoustic guitar when I was a young girl. I forget my age – perhaps 6 or 7 – but I have a picture and I am wearing a pink panther shirt. I still have it and I still have not mastered it. PLAY BADLY. Took piano- PLAYED BADLY. I moved on to bass guitar and still have both of those as well. DID BETTER – played in bands. Much better received – probably b/c gurl bass players are hot. Also I played saxaphone and clarinet as well as bass clarinet and soprano sax growing up- and EVEN went to jazz camp. I LOVE music. All music (some exceptions). BUT MUSIC IS LIFE. It is the universal language. I love it. However, If it plays on a current radio station - I probably don’t like it as much and probably haven’t heard it.

☙I have collected art from around the world. I have a good eye for gifted individuals. Even before they become popular I have seen talent. And I am proud of that. I LOVE original art and I have never been able to afford “real art.” So I buy it from local artists. And I am delighted to say that several of my pieces that I saw and KNEW were artists going somewhere – were going somewhere!! They are now FAMOUS! And I feel fab. And I am not afraid to put my “fancy” art with a thing I make myself or something cheap and inexpensive. Art is art. Beauty is beauty. I do NOT allow others to tell me what art is – I SEE IT MYSELF.

☙Travel is life to me. Cultural awareness is my most treasured gift. That I understand and love other cultures matters more to me than any other thing. When I visit friends I say, “Take me to your grandmother’s butcher” or “Take me to where your grandmother worships.” Going to weddings or funerals is a big deal. Watching holy festivals and holidays – A BIG DEAL. Eating foods- BIG DEAL. Understanding it when you travel.

☙I brush with Toms of Maine organic fluoride Spearmint and then at night I use Fluoridex leave on fluoride toothpaste. I have really straight teeth and floss with oral b tape.

Are we there yet? This was so much harder than I thought it would be.

Latest Column - The Snark

2010-08-21T00:45:00.000-07:00

My latest column. Thanks for all the sweet comments and e-mails already... For cancer and lupus patients I know it really hits home.

Alive! With Pink Blooms!

http://dearthyroid.org/chronic-snarkoploist-alive-–-with-pink-blooms

A Fitting Tribute From Peggikaye

2010-08-19T21:11:00.001-07:00

Here are the beautiful balloons that Peggikaye got on the occasion of the birthdays of our unborn children. Aren't they beautiful? She let them go in the air to celebrate the lives that were not. The memories that never got to be made. The pink princess balloon was one she got especially for the one that was lost 2 years ago and whom I mourn.

I've been feeling especially painful... been feeling the bitterness, been feeling it hard to be happy. Been feeling as though REAL LOVE does not exist. Been feeling like God mocks me. It was too much for my ex and me. He would look into my eyes and say, "Our children will be so beautiful. How could she be anything but beautiful and brilliant. We are beautiful and smart they will be double so." And then he was so happy with me -WITH US. SO HAPPY. He would pick out names - a man - choosing names when I was away. Imagine!

I was happy. I WAS AN OBLIVIOUSLY HAPPY WOMAN. Who could ever take that from me. I'm so quickly pleased and easily pacified by being loved and by loving. I felt a tremendous failure as a mother to not protect my child from death. My doctor said, "Melissa- this isn't your fault- but it always felt like MY FAULT. How could I be so far along SO FAR ALONG so I even knew she was my girl. I COULD SEE HER - KNOW HER- and yet lose her?

This healed me today. This ritual. I feel like a group of woman bore witness to my pain. For only a woman can understand what it feels like not only to lose a child but to have a husband leave me so soon after wards - BECAUSE HE COULD SIMPLY MOVE ON two months later. I had no time to mourn him or her. I had no time to mourn my losses because I had to move on with my life - jobs and living situations and dealing with illness and scrambling to make sense of the last two years. And so thank you Peggikaye - for seeing my daughter playing and safe and at peace. Thank you for the ritual today. Thank you for healing me. Finally my tears were shared by women who UNDERSTOOD and I felt held and loved and acknowledged. I wanted children - I wanted to love them and nurture them and be a mother more than anything on the planet. Thank you for bearing witness to my loss.