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.