Finding Meaning versus Meaningful Life

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

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

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

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.

And so it goes.