Slaying Dragons

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

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

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

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

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

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.