the broken mending
It happens often. And it can happen anywhere: with the Lyft driver I only just met, in doctor’s offices, social and art gatherings, work and organizing events, with those in the health and wellness industry who claim empowerment and do great harm with their assumed good intentions. It is the discomfort in others that slips in sideways the moment I make a comment in conversation that alludes to or directly states that I experience myself as sick, unwell, unhealthy or the worst offender — broken. Equally uncomfortable is when I imply or directly state that I am not giving my life to the pursuit of health, wellness or getting better.
When this happens, I am met most often with outright disregard for my own experience and naming and am told some form of the following — that I will get better if I try hard enough or wait long enough or want it enough, or that I am not broken at all but am in fact perfect or beautiful or whole just as I am.
Sometimes they say things about my appearance, that I “look wonderful” or “I would never know by looking at you” or “but you clearly value health” and what they really mean is that I look thin and in our oppressive fatphobia we equate thinness with health. Or that they can not “see” my disability, only serving to further harm in their language. Sometimes, they say things about how I am so strong and resilient, and therefore not broken at all. As if I must have misunderstood my own reality and lived experience. As if my life must be dissected into small narrow portions and squeezed into separate categories without anything touching one another, making it easier for others to digest rather than allowing for the complexity of all the many parts and pieces of a lived life and how we are all a mess of multitudes capable of being both things at once and neither and everything else. As if there is a binary, only broken or whole. You have to pick. Only one.
Well your binaries don’t work for me. They are part of what broke me to begin with. I get to be all of me. I name myself for myself now.
I used to say nothing back at all. But it used to be easier for me. Then I lost the ability to perform and please, along with losing pain free days and ease of access in spaces and ability to do things. My life became smaller in so many ways; my voice so much clearer. And so now I walk away or I directly correct them. I respond. I say:
“I did not say I am not valuable. I said I am unwell. Being sick does not at all make me any less worthy as a human being. It means my body and brain had things happen that make it work differently now and this culture has decided this means my life has less value and I should give all of my time trying to prove my worth by showing everyone how disciplined I am trying to get better and overcome. I disagree entirely.” They usually become very uncomfortable and the conversation stops.
We want to fix what is broken. And so to say I am broken implies that there is something to fix. It is so counter to our ways of being in this culture to be okay with myself. This comes from a pervasive pathology medical model which tells us everything can be cured and eradicated, returning to us the Eden of a pure state if we keep looking. It never mentions the cost of this though. It never mentions that there are always implications to cures, that diagnosis is never neutral, that power dynamics exist in every room and interaction, that what we define as pathology and disease and deviant and defective can lock people up and create stigma that kills just as much as it can save lives. It does not mention that even in best case scenario, that the cancer leaves your body, that cancer was cut from my own body, that the cure is successful in this case, that the doctor will leave and go home to his very big house that your surgery helped pay for and he will live with none of the repercussions in his own body, that those will ripple out into my own body and I will be left with the bill and with lifelong health implications that will create a series of illnesses that no one mentioned when they gave me my discharge paperwork and painkillers and I went home and ripped out the IV tube they had forgotten to remove from the top of hand, ripped it out and tossed into the bathroom trash can. None of this will ever be spoken. It will only be lived. Cure is so very complicated. And this is assuming there is cure. I also live with what cannot be cured.
And if there isn’t a cure, then we can and must be courageous and inspiring in the ways we live and cope and make meaning and really by this I mean make others more comfortable.
This is the rule I realized rather early on having ongoing illness that I was violating. It was not just that I did not get better.
It was that I did not overcome.
Having long term chronic illness and disability means there is nothing that can be cured, and if you cannot cure me then I am told to inspire others through overcoming no matter the obstacles. And I broke that unspoken agreement. I did not overcome. I broke.
In so many ways I have been broken and in so many I am sick and in so many ways I am unhealthy. I do not apologize for this. I also know healing in all these voluptuous and rich ways, the kind that make me glad I lived long enough to be here for them, to know it was possible. Things like learning to love and be loved like this. Things like seeing pink flamingos, and being found, and knowing how to stay with myself. Things like the way my body changed in the heat and salt next to her that year. And this does not change that I broke. It does not fix it either. I don’t want or ask it too. I live with long term physical and mental chronic illness. They are incurable. They do not need fixing. They need care.
There are some who do overcome. They are triumphant. They do not let their illness get them down or slow them down. They go on to do greater things than before. Or so the story goes. And those are usually the stories we tell. Because those are usually stories we, as in we the collective, we as a society, want to hear. Because it allows us to continue in our ableism and our fear of becoming like those “others” over there, the ones who are “needy” and require constant care, the ones who are a blazing emblem of human vulnerability reminding us that we may not always be able to be fully functioning productive machines and therefore we too may lose our value and worth and be left behind and in need. The ones like me. How horrifying. So better to focus on the narratives of those who overcame despite all obstacles.
I did not.
There are a great many of us.
We did not overcome. Nor should we be required to. We do not experience our trauma or our illness or our bodies or our brains or our disability or our illness as a thing to be cured or overcome or even a thing to be transformed. Some of us do not even experience it as a thing to be healed.
We live our lives and our lives have value and meaning, as they are. We believe we are allowed to define ourselves for ourselves.
And for us, I write secular prayers:
Deprive the system that pathologized you,
Split you into parts and pieces dissected,
disease and cure,
Deprive it of all its power
To determine and define.
If we are not a problem to be fixed, what then?
What power then is already ours?
You.
This broken blooming human life,
Not to blame for what another did,
Not a body left untouched and spared through doing everything right,
but
Mending and moving in directions outside maps,
Creativity they could never control and care you did not have to fill out a form in order to prove
You were deserving.
***
Someone once said they did not believe I could say I was healed or healing if I still said I spent many hours on the bathroom floor. That this is somehow the opposite definition of healing. Maybe for them this is true. I cannot say. Anymore then they know the realities of what it is to live in my own body and brain. What I do know, is that I am broken and blooming both. I live with illness and disability that mean my days and life looks very different than what this society says is valuable. And my worth is not determined by what I can produce or by what I am told healing health and wellness looks like. So I would say yes, I am healing my insides, the parts of me that come from such a deficit and the parts oppression and your insistence I not be broken came and broke in me. And there are no cures for what is chronic and I live with a multitude of chronic illness so no, I will not cure them but I will care for myself in them, deeply and with all of me.
I am art.
It is the art of mending. A thing done for the pleasure of its own sake. A thing practical and daily and quotidian and quiet. A thing never finished. Never complete.
How it shows where the stitches are. How it’s all parts and pieces. How you sew and sew and sew and sew and always there would be more. How it doesn’t matter because it is also you, and your insides and your knowing and your body that hurts and your life. How it is the way cherries taste in summer and the way you can’t have anything on your waist anymore. And the way you still sometimes remember to sing Bruce Springsteen. How I am broken. How I am so whole. How I am art, mending.
