What if this is the moment that I learn how to eat again. Am I ready? Am I ready, in a sense, to be cared-for, to be cared-out? I mean, to be cared-about? There is a feeling I get just from sitting, back hardly grazing my chair, inflamed, puffed-up skin grazing the place where the chair back meets the seat, and it itches and tingles but is numb in the places that matter. I locate in that itchy spot everything I have felt for the past 72 hours. I watch it move outward to my pelvis, to my stomach, to all the tiny muscles in my groin that pull and pull and pull, that tell me pain is constant whether in my bed or out of it, standing still or walking, that this pain, whatever number I assign it, will not leave.
* * *
My mother cooks my vegetables to perfection. I sit. My mother slices garden tomatoes and places them on my plate. My father holds open the bathroom door. I struggle my walker inside. My father places pain relief in my open hand, leaning over my bed when I cannot reach him. I undress in shame before my mother, a child again; she cleans my feet and legs with a wet cloth. Later she will rub my swollen ankles and I will try to sleep.
In the hospital, oxycodone had me sleeping all the time. I took it in the morning, afternoon, and evening. I attempted to read but found my eyes settling shut before the page was out. I slept so that I did not have to drink water, because I did not want to ask for the bedpan. I slept until I was woken for my Tylenol, pumped cold through the needle in my fleshy inner-elbow. I slept to forget how much I wished to be standing, even running — I slept to forget the Delta-anxieties from which I once believed myself exempt. (In the hospital, no one is safe).
I slept to forget all this time spent in bed (Johanna Hedva). I slept to forget the outside-oughts, the things I believed my Self capable of. Temporarily disabled in a way until now alien to me, the rock upon which I build that Self quakes below my feet.
* * *
I am wearing hospital socks even though I am home, because home doesn’t feel like home, it feels like an obstacle course. (I remember things here I cannot untouch). Underneath my hospital socks are compression stockings, and they squeeze my legs and squeeze and squeeze until the water gestures toward my knees, which turn to great painful lumps beneath my pajama pants. I can almost feel the fluid whirring. But I cannot feel the fluid as part of myself. I cannot believe what swells beneath my skin. My feet are so crowded by fluid that it hurts to stretch my toes. Everything inside me feels ready to rip me apart. I have felt ready to burst out of my skin many times before, but now, for the first time, my skin is truly bursting; I cannot block or rationalize that thought because this overflow is material, I am my own fear come to life and I must sit and wait to be loved for it.
A woman named Shelly comes to the house. She misgenders me as a boy and as a girl. She has me stand and walk for her. She tells me I am High Risk Drug Abuse because of Diagnoses. She says, Don’t try to master the pain. You will fail. Don’t push yourself and cause pain. You won’t heal. What do I do, I ask, hungry for the challenge. Rest, she said. Exercise your ankles, nothing more.
I am as suspicious of physical therapy as I am of any other genre of therapy. I am suspicious that her undemanding guidance will leave me floppy, sagging. I am suspicious that she does not have my best interest at heart, a suspicion of which I am likely correct. When Shelly leaves, my mother tells me to eat, as I told her to tell me to do, because I cannot tell me to eat on my own. She tells me and then she gets up to cut vegetables. To make a veggie burger how I like it.
And here I am / as raw as my own
overstuffed, too. I feel my whole body
is betraying me, because it is; this body has always been a betrayal but now it’s mask-off. It’s no more hiding. Let’s suffer you down the hallway like an infant first learning to walk.
* * *
Is care stored in the pelvis? It’s hard to believe I have ever used this thing for sex. It’s hard to believe this body / has ever done as told. It is so hard to fall apart and know I will need do to the ugly hateful work of coming back together, and in my most ugly and in my most hateful I will be witnessed, of necessity, by others; that I am ugliest and most hateful when I am most inside my body, simply because I have no place to escape. I struggle to see the birds outside my window because I can’t easily rise from my chair to look. My walker rattles on the floor. When my walker becomes a cane, it emits a muffled grunt.
Rarely in my life have I been physically incapacitated; Madmind aside, I have long and foolishly taken for granted my ability to walk. My primary sources of comparison, the other times in which I have been temporarily disabled (verb), are themselves telling: so similar to this time and yet so different. Both happened well-before COVID, both were the hard-won result of self-advocacy that should never have been necessary, High Risk Diagnosis concealment that should never have had to occur. But this injury? This time, unlike those prior, I was not trading temporary immobility for the glory of a flat chest, a disappeared uterus. I could not take comfort in the meta-narrative of autonomy overlaying my temporary reliance on others. This time I was injured and temporarily hospitalized for no reason at all. I was subjugated to my body, not an agent participating in a delicate tango of gender-transgression. Even physically, this injury was different; the pain was greater than that of my mastectomy and hysterectomy combined. Between the piercings and tattoos on my body, I display tolerance for — and even pleasure in — a degree of physical pain. Yet, this was the worst pain I ever felt, an incomparable pain so violently beyond any pain I have felt before. It was the first time I ever fully relied on pain medication — recovering from my previous transmedical interventions on Tylenol alone. That initial night in the ER was the first time I understood what a “ten” was, and I had shouted it when they tried to discharge me too early. TEN! TEN! TEN! There was little else to say. There is no writing this. Pain absconds.
* * *
And I find myself hurting still
in ways I could not have anticipated. At no time in my adult life have I been so physically dependent on others for survival as I have these last few weeks. Even as I slowly heal, memories of that state of complete vulnerability remain fresh. On my first full day in the hospital, I received my breakfast at seven in the morning, timing for which the young gay nurse on rotation that morning profusely apologized (“Not your fault,” I told him. “And I love the pink hair”). By nine, I had to ask him for the bedpan. Catch, release. Imbibe, excrete. Meds came every four hours, by mouth and by IV. I was a receptacle of things and then an eliminator of them. It was several days before I could struggle to the commode, during which time I prepared myself to respond to comments I had no interest in hearing. (When one particularly attractive nurse commented that I was pooping great, I responded, “I eat a lot of fruits and vegetables”). When it came time to use the real toilet, the physical therapist on staff followed me and my still-unsteady walker to the bathroom, and waited outside, triggering in me a litany of memories from another hospital, another place, another time. I snapped at her to leave me alone, though as I said it, I knew I needed her help, needed her to hold the door and get the light for me, needed to know she was close enough that I would not fall.
Thing is, I don’t know how to (en)trust my body like that. I still don’t. I never have. It is not that I see it as a sign of weakness — though, growing up in the shadow of structural ableism, that too, plays a role — but rather that I have seen it as a portent of lost freedom. Sometimes my desire for freedom is so violent and deleterious that I feel like an anti-masker of myself, compelled to perform stupidity on my own rather than accept wisdom in collaboration. I am Mad, I am a psychiatric patient and consumer and survivor and ex-patient (all at the same time!) — surveillance and management of my bodily functions, with whatever rationale and for whatever duration, set my Madmind on fire with fears I prefer to forget. I rage with bodymemories whose edges I grasp and release, with teeming traumas I struggle to name, among them, now, the sound of skates beating pavement, of the feel of dewish grass against my jaw.
I can now wash and toilet and even carry my coffee mug on my own, yet my body reels. I cannot rid it, this trauma that has tainted interdependence for me. I can only actively forget until material conditions disallow me from forgetting anymore.
* * *
Sometimes I forget that I am injured, and I try to flop my body on my bed or chair the way I once would, careless-body, flying-body, tumult-body.
When I stumble, I remember once more, that I am learning how to walk again.
I mean I am learning how to be again. I mean, I mean.
I mean I am learning how to eat.
I mean, I am learning how to care, or to allow myself to be cared-for, or to realize the interstices where these things overlap. The last eighteen months have, if nothing else, shown me that I am nothing without you, in the abstract or the material. Crip conceptualizations of interdependence are far from new, yet take on a new valence when I, a Madperson for whom visions of autonomy tend to take the shape of negative freedoms — freedom from institutions present and yet-to-come (Liat Ben-Moshe), freedom from care and “care” and all its despicable glamours (Mel Baggs) — collide with the immovable object of my bodymind, one that, for all its protestations, will not move the way I think it (ought) to. Every night, I beg for a foot massage, as fluid once again crowds out my poor toes. My mother lifts my legs onto a high pillow; I shift imperceptibly, searching in vain for a reading position that will not irritate my swollen lower-back. Every single thing I do requires support. It always has, but it is much easier to know that a garden-fresh tomato came from someone’s garden than to realize that another person is responsible for bringing my water bottle and medication to my room, or that mere weeks ago, alien hands lifted my body and placed a basin beneath it, lifting once more to remove my urine.
* * *
I can feel my kneecaps now. I can feel my toe-knuckles and ankle bones. The excruciating and unwalkable swelling has abated with the help of an exercise bike and compression stockings and Shelley’s exercises. Several nights ago I argued with my mother and afterward broke down. In a voice much different than the one I had raised minutes before, I had to ask for food.
This, I realize, is the crux of my frustration: not the vulnerability alone but what I perceive to be the shame of it, my inability to carry uncomplicated rage or pain or self-denial without mercy winging toward me, quieting me, picking me up and seating me at its feet. This has been a month of confrontation with the fact that, not only am I not a fortress, but I am not a building at all. I am a soft sculpture. Traces cling to me, they tell me what I’ve touched. My swollen parts imprint on impact (edema with pitting). But how will I reconcile this with Madness, with the push to push my bed in protest, with my refusal to lie in it?
(Temporarily) able-bodied Madpeople often have this problem: clinging to the language and metaphor of physical disability without appropriate attention to physically disabled personhood. Gabriel Gnecco, a Mad and multiply-disabled colleague and friend, commented several months ago the ways in which “psychiatrized able-bodied people use physically disabled people as talking points and make all politics on disability revolve around them[selves].” In doing so, we not only divert vital attention from physically disabled people, but we also commit shameful acts of narrative prosthesis. If “depression” is to be described as “crippling,” and if psychiatric medication is described as a “crutch,” we reduce physically disabled people to fit our own circumscribed visions of pathetic dependence, metaphors for those states we want most to avoid. Shelley tells me stories of her other, mostly-elderly clients, who refuse help and then get hurt. These are injuries of hubris. Of pride, pride at not being Them. Not being disabled. Not needing help.
But help is the root of all of this, is it not? Would we have community if we did not need help? I am searching for a way to divorce my needs from the spurious claim that I, a Madperson, ought to “get help” for perceived deviancies in order to be permitted autonomy. I am raging against a world that renders all of us perennially vulnerable to all manner of crisis and hurt, yet imprisons those marked as “burdensome” both with words and with walls. To seek Mad liberation right now, including and especially my own, while living in this new bodymind with its needs and weaknesses. Pain is weakness leaving the body, I shout at myself, feet beating the pedals of the stationary bike. In high school, I hiked a mountain in Converse just to see if I could, just to prove the kind of pain I could withstand. And now I must seize myself by the neck, thrust myself toward the rotten work of with-standing, and with-sitting, and with-crawling, and with-laying, because what my bodymind can do, it cannot do alone.
* * *
Typically, I am a writer. Now, I am still a writer, but much of my writing comes in-motion. Sitting on the bike, headphones in, I type bad poems on my Notes app.
i made my Self / a home / in the center / of myself / I made
a dent / a type / of haunting / a place / a place / gorge / d / with air
if I am us / ing my power / for good / what / to do w / my Self
I try not to delete the pieces. I try not to count minutes. I try thinking words, not numbers, type fragments of this essay and things I think will be this essay but end up being 7,000 other essays I will someday finish. I play 20 minutes’s worth of voice memos from a beloved chosen-family member who just acquired a new hyperfixation. I finish an audiobook, return it on Libby. I update my Goodreads. I check my email. This is writing. I am doing the things I am writing to you — we are doing them together. I am doing them together with the makers of my phone, with librarians and coders and friends. This is writing. This is writing because I am at once alone and together.
I exercise in the mid-afternoon, ending as my stomach begins to claw for attention. I slide off the seat when my mother arrives from work, totes of groceries and fresh compression stockings and adult washcloths in her hands. She brings water and Tylenol to my room with bowls of hot food, walking behind me as I limp down the hall. I apologize. I’m slow. She says, I can finally catch up with you.
This, too, is writing, I think mid-limp; my mother and I are writers. We are ones of the story and ones of its tellers. In my binding is inscribed a great and unfathomable softness.
* * *
I owe this essay, first and foremost, to the cripplepunk (henceforth cpunk) movement,* to the notion that my body is the thing I am living in, must learn to live in, regardless of what it does or does not do for me; I am to approach this body not with sanitized “positivity” but with acknowledgement of personhood. This is not a fortress-personhood, whose periods of health may protect it from later injury, but a stunning and often-frightening softness. It is crucial to cpunk, which proudly performs acrid noncompliance laced with critical tenderness.
This essay owes its time-free/free-time/fog-time structure(lessness) to A.H. Reaume’s essay, Brain Fog (http://open-book.ca/Columnists/Brain-Fog-An-Essay).
This essay owes much of its analysis of lateral/intra-community ableism to Gabriel Gnecco.
* Coined and spearheaded by the late blogger-activist Tai of crpl-pnk.tumblr.com.
[sarah] Cavar is a PhD student, writer, and critically Mad transgender-about-town. They edit at Stone of Madness and swallow::tale presses, and have work in Split Lip Magazine, Electric Lit, CRAFT Literary, and elsewhere. Cavar’s latest chapbooks are OUT OF MIND & INTO BODY (Ethel Press) and BUGBUTTER (Gap Riot Press). Find them at www.cavar.club, on Mastodon at @firstname.lastname@example.org, and at librarycard.substack.com.