Dear Erica,
You wrote me asking if I can think of a way, any way, that healing might happen within the current institution of the medical-industrial complex and its attendant oppressions, of which you are currently a student, set to begin your residency this year. The importance of finding a way is urgent, you wrote, because you will soon be seeing patients who come to you to be healed, in hospitals, ERs, clinics, and you’ll give them treatments that will decide their lives. You feel uncertain if your chosen path as a doctor, at this moment in history, can also be a path of healing.
You wrote: “I am someone who will soon be a physician attempting to care for people, and yet I find that I still don’t know what healing means.”
I could graft myself onto that same sentence, but from a different position: “I am someone who will be the recipient of attempts at care from institutions and practitioners of healing, and yet I find that none of us really know what healing means.”
It meant a lot to me that you used the word “attempting.”
You are younger than I—27, you said. You are the first-generation American child of immigrants and, you pointed out, we share Korean heritage, particularly a grandmother who escaped North Korea during the war. Although you didn’t explicitly state it, I understand the kind of family pressure that probably existed in your life around choosing the right career. Becoming a doctor has a special meaning to immigrant families; it is considered the noblest profession, and perhaps the greatest signifier of success in America, although it remains a symbolic promise that only comes true for a few. It reminds me of how, every time I visited my Korean grandmother as a child, she urged me either to marry a rich man or to become a doctor. She’d also shake her head severely—no—when I’d ask her if, one day, we might visit her homeland together. As if I were asking her to return to a haunted house.
You asked me a lot of questions in your letter, and they all felt like questions I ask myself. They seem to be variations of asking, “What are we going to do?” which I think is the same as asking, “How can we heal?” I’ve come to understand that the conflation of these two questions is crucial not only to finding a way toward healing—which is to say finding the way that is healing—but also toward how political resistance might work, toward justice. Keeping this fact—that healing and justice might be the same—always present in your thoughts is a way, one way, I can think of that might answer your questions.
For some of us, there is a relationship between healing and justice because what oppresses us has also made us suffer trauma and its accompanying symptoms. Oppression, domination, and violence live first and foremost in our bodies. As much as they are ideological systems, their effect is always material; they deal in matter: flesh, bones, blood. They pierce tissue with bullets, crack necks with boots, make stomachs chew on their own acid out of hunger, imprison bodies in small lightless rooms made of concrete. They flood brains and nervous systems with adrenaline and panic. On the less dramatic side, they work insidiously: they instantiate and re-instantiate memories of unhelpful doctors and police who are not figures of help or safety but of violence and terror; they invalidate and dismiss experiences of pain and suffering, especially those experiences that they’ve directly caused. They deny access to medications and therapies, they frighten and alienate with categories that pathologize and discriminate, they construct a world whose very premise insists that suffering, illness, and disability are abnormal and wrong, and that banishes those who experience such stuff.
So, the process of healing is a way of reimagining a political future for the social body as much as it is about finding ways to care for and survive in our individual bodies. And, it should go without saying, bodies are fragile things. That’s what makes them different from ideologies—they are bound to matter, they are flesh that can be touched, held, scarred, that can dance and laugh, that will decay, that will remember.
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I received your letter months ago, and have not been sure how to respond, although I’ve thought about it every day. I finally started writing a response from a German hospital, during January and February, where I was for three weeks, in the psych ward for depression. It was the longest winter of my life, and it made my life feel so little, even though my life often feels little. (It was not my first hospitalization for chronic illnesses, mental or otherwise.) For most of my hospitalization, I was unsure that I would survive, and so responding to you felt serious and fateful, something I must take care of if I wasn’t going to make it.
This letter, then, is a document of emergency. I wrote it thinking it was one of my last attempts at communication, and in many ways I was trying to communicate to myself as much as I was to you and the questions you asked. If I could articulate something about healing to you, maybe it would articulate healing for me. I wrote it by hand on pieces of printer paper that the nurses gave me from their station. I’d walk down the hallway in my pajamas and knock on the glass. I had to wait for them to unlock the door, then I’d make the gesture of writing by hand because I didn’t know the German words. When my partner visited me, I’d ask him to take photos of the pieces of paper I’d written on, in case I couldn’t take them out of the hospital myself.
It strikes me that I chose to write to you—a stranger—while I was hospitalized, when I was speaking and interacting with doctors and nurses multiple times a day about these same questions. Instead of walking down the hallway, tapping on the glass, and trying to have a discussion about the relationship between trauma and justice with the people who are trained professionals in the field of medical care, I directed my voice in your direction, you whom I’ve never met, may never meet, who felt very far away, across a distance that was dark and unfamiliar. I think it reveals how vast the distance feels between patient and doctor: for patients, it often feels like trying to connect with a stranger with whom you have no chance of actually connecting. Many chronically ill and disabled people face this dilemma: we are forced into long-term relationships that are devoid of the things—trust, intimacy—that a long-term relationship needs to work.
The distance is huge, obscured, and unbreachable, but there’s a special terror in it because the distance is often right in front of you, between your face and your doctor’s as you sit in the small examination room together. The distance swims in the air that you both inhale. It distorts the exchange of two bodies in close proximity, making a little void that yawns open. It can feel like you’re speaking a language that your doctor not only can’t understand, but doesn't care to hear.
The doctor who admitted me when I arrived at the ER was summoned just for me because he was the only one who spoke fluent English in the psych ward. Because of his generic youthful and German handsomeness, I nicknamed him Yay-Crew (in German, the “j” is pronounced like a “y,” like my first name). Yay-Crew challenged my stereotype of the uptight German psychiatric doctor because he’d say things like “for sure.” Once he cautioned me against a medication because it might “fuck up” my liver. I wanted to trust him, even to like him. We seemed to be of the same age. He laughed, once or twice, at my attempts at a joke. I sometimes imagined that I might run into him outside of the hospital (if I was ever released), at an art opening or at the movies, where we could meet on shared ground. “You like this director?” “Yes, I’m a fan! You too?” I don’t know if imagining that we might have similar social groups or interests helped me or hurt me, because it was all fantasy. I catch myself wondering about sending him this letter, or my other essays on illness, but then I feel a swift rinse of shame, as if I’ve been cast as the spurned ex holding on to a false hope. I admonish myself, But why would he want to know how you’re doing? He doesn’t care about you.
I noticed that, when discussing my treatment, he’d state it like this: “What is important for me is that you are stabilized,” “What is important for me is that you don’t have too many adverse side effects.” Always, what was important for him. I wondered if he learned this technique in medical school—are you, Erica, being taught to talk to your patients this way too? He rarely asked me questions, other than the perfunctory, “And how are we today?” The vague, elusive, imagined “we” of that sentence always felt like a large void that yawned open between us. Nonetheless I tried to insert myself into the conversation. “But how much will it cost?” “But I don’t want to do that.” It was a struggle of making myself not only have a presence, of making myself be seen and heard and understood, but of persuading him that mine was an important presence, one that mattered, one that he had to consider as much as I had to consider his.
A note I wrote down in the hospital: “What am I doing here? Malingering, lingering.” Being chronically ill often feels like all I really have, which is to say all that I own, is radically temporary—a lump of painful, decaying, remembering matter whose existence is composed of different strategies for lingering.
In our last meeting, on the day I was released, he told me, “You’ve made a tremendous accomplishment.” It made me laugh. “My tremendous accomplishment is that I didn’t kill myself?” I said. Yay-Crew made a gesture then, a little bow of the head, an opening of the hands in my direction, that I’ve tried to interpret but I still can’t say exactly what it meant. It felt a bit parental, go forth now, my child, I trust that you will be okay. He told me that I could always come back.
You might wonder what place an emotion like trust has in the science of medicine, but if you take anything from this, I want it to be that trust is the most important thing a doctor and her patient can share, because trust is what keeps people from falling apart, and it’s what puts broken ones back together, and in the cases where the brokenness is all there is, trust can offer a small encouragement that the brokenness is bearable—that it can eventually, hopefully, ideally be reframed not as “brokenness” at all, but as the different parts that are there to work with. It’s the only force I can think of that might alleviate the vast distance between us, as well as the vast distances between the many parts of myself, not because it will diminish the distance, but because it will honor it. It will acknowledge that the distance is here.
A therapist once asked me to define trust, and I found that I had no answer. After years of feeling my way toward a definition, the best I came up with is that trust is not a permanent state that can be attained, but only a sign of the possibility that unbearable things can be bearable, that they can come together, again, or for the first time, no matter how temporary that moment might be, and even if they never come together, that too can be borne.
I struggle with the fact that the word health has its root in whole (the Old English hal). I guess it can mean that the process of healing—the return, or first trip, to health—means a return, or first trip, or second, third, fourth, fifth trip, to “wholeness,” where things come together. But I don’t believe that this state of “wholeness” is a permanent one that can be attained, or for that matter, obtained—attain meaning to “succeed in achieving,” and obtain, to “possess or acquire.” Along with Yay-Crew telling me that I’d made a tremendous accomplishment, I’ve heard both verbs used in conversations about how to approach wellness, health, and healing. Both verbs, to me, stink of neoliberalism’s many cruel optimisms and empty promises, and they feel too finite. Is my health or healing or well-being or wholeness something that I ought to approach as an achievement, a success? Is it an object of value that I can purchase, possess, and, once obtained, have forever?
Another therapist recently told me his definition of trust: “Trust is that you are here.” I thought of flesh, decaying, painful, remembering, that is bound to being here. Lingering, bearing.
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I think the profession of a healer is not a practice that facilitates attaining or obtaining wholeness forever, but a practice of bearing witness to all the parts—the parts that have been apart, are apart, and will remain apart—being here.
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One of the problems with healing in this fucked-up world is that it’s presumed that you, the doctor, have a set of knowledges that the patient doesn’t, so for the patient to get better, to be cured, or to heal, they must submit themselves to Doctor’s Orders. In other words, I’m supposed to wholly, absolutely give my trust to you—but not because you’ve demonstrated any action that would earn my trust, specifically, or because we’ve gone through the stages of intimacy and equal exchange together. It’s that you represent a discipline that is supposed to be deserving of trust; I’m supposed to trust you simply because you are a doctor.
To us patients, this dynamic feels like one in which we are helpless because it is. It feels one-sided, dangerously unequal. I have to give my trust to you, but not because you’ve earned it. It’s because you work in the hospital, or the clinic, a place that is a metonym for medical expertise; it’s because you speak in the coded language of medicine and wear the white lab coat, a rehearsed performance with its attendant costume. I don’t feel like you trust me, because you are treating me, or parts of me, as enemies to be vanquished. I’m told things like: “We’ve got to get these symptoms under control,” “We’ve got to beat this thing.” It’s framed as an exercise of domination, an attempt at mastery. But the body and the mind are not places for domination and mastery.
It gives me the impression that medicine is like a war room, full of doctors moving little pieces around on a table, and we patients are locked out and waiting for the blast. The presumption that you can make for us a world that doesn’t integrate us into its design is a world in which we will never feel or be integrated—and so, what use is this vision of wholeness if it can exist as whole, wholly without us? What kind of integration is it when it is made of only one part?
What if, instead, the presumption went both ways—that the patient was also a specialist, like you, in possession of a set of knowledges, a vision of a world we’d like to build, that is different from this one, and so by collaborating as equals, utilizing each person’s skills, we might together build a world that contains multiple parts, a world that is not only one part—your part?
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It was weird, for many reasons, to get your letter, but the primary one is that it shocked me to be seen in a position of authority to answer your questions. It made me ask myself what kind of knowledge I have about healing that you, trained and educated in the field of medicine, do not. What would I have to teach you? You mentioned that you’d read my essays “Sick Woman Theory” and “In Defense of De-persons,” so I think I know why I came across as an authority on what healing might mean. The voice I was able to construct in those essays was empowered in its sickness and vindicated by its tragedy.
But the truth is that I wrote them as documents of emergency too, just as I’m now writing this letter as a document of emergency. What I mean by emergency in this case is a kind of paradox: I’m trying to talk about the experience of being alive in a chronically ill body, a disabled body, a body that’s been traumatized and is still being traumatized by systems of oppression, which is to say a life lived with the certainty that one’s fragile body is the only certainty. It’s like living right at the edge of what feels ferociously unbearable and what I must learn how to bear.
I think of a friend’s book title: A Goddamn Infinite Emergency: Love Stories.
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I’m out of the hospital for now and, though it feels like the emergency has been paused, I know it will return. In a follow-up appointment, a nurse expressed his shock at my certainty. “You are so sure?” he said. “Yes, aren’t you?” I said. He was silent for a moment, and then said, “Yes, but normally patients aren’t so professional about it.”
When I tell this story to abled people, or tell other stories about my inextricable lifelong relationship with doctors, hospitals, therapists, medications, and the medical-industrial complex, I’ve noticed that they have a hard time understanding this certainty I have that such things are not only inevitable in my life, but main players. They balk at the fact that I will have to take medication until I die. They say, “But don’t you think you’re giving your illness too much space?” That I would be certain I’ll return to the hospital seems to betray what they presume is true about hospitals, which I gather is that hospitals are a rare and bizarre interruption of “normal” life. How can I explain that the equipment and smell of hospitals, the wan light and horrid linoleum floors, are as familiar as memories of my childhood home? That the routine appointments that take up my time—in-home care when needed, twice-a-week physical therapy, weekly psychotherapy, biweekly meetings with my social worker, monthly checkups with my general practitioner, etc.—are as woven into my daily life as work, sleep, and having tea with a friend?
In honest, neutral terms, without tragic drama or empowering vindication, I understand that no matter where I sit or sleep in this life, I will be doing it in the house of illness. Everything about living in this house is difficult, but there’s a pernicious difficulty in trying to communicate these experiences to a world so structured by ableism. Sometimes this feels like the most unbearable part of it all. It’s not so much that articulating the experiences is difficult, although it surely is, but that few really know how to hear and understand them from a non-ableist perspective. Working with my editors on this text, preparing it for publication, revealed to me that, even with the best intentions of trying to support stories like mine, ableism often gets in the way. My editors were not being malicious. They wanted, and tried, to support me as best as they knew how. But they also suggested that I reimagine this letter’s position now that I was out of the hospital, implying that the position might be healthier, or at least different. This is not the first time I’ve had such an experience with an institution that has the power to support me, as much as they have power over me. There is often a fantastical expectation that I have a “true” or “real” self, and those sick, mad, crip selves are not really me.
Remember how ideologies work: as much as they settle into your bones, they also insidiously structure your world. Ableism makes it normal to insist, violently and subtly, that everyone has the unlimited capacity to work and produce, according to the standards of the systems in power. Ableism makes it normal to think of disability as something that one “suffers from” and can “overcome” or “transcend,” to think of chronic illness as something one needs to be “strong” about, to think of bouts of illness as disruptions of “normal” life. We’ve all been conditioned to expect that such perspectives are the norm, so much that we don’t even notice when we adopt them ourselves. Some of the most frustrating encounters I’ve had with ableism have been in conversations with people who are chronically ill or disabled themselves. It’s taken me years to understand how often I’ve had, and still have, ableist expectations about myself—even in the hospital ward, I pushed myself to meet the deadline for this article, because I saw its completion as a measure of my worth.
Maybe I don’t have to explain to you, Erica, how being alive in my body is to be alive always in a hospital—since you, a young doctor, and I, a professional patient, live and work under the same roof in this house of illness. Maybe you already see that the self I am in the hospital is a no-less-normal part of the self I am at home. Maybe I don’t have to explain to you why congratulating someone on not killing themselves frames their life in terms of achievement and success, of health as a kind of property to be acquired. Maybe you already understand that your profession ought to aim for honoring the many parts and the distances between them, and the possibility that such distances might never diminish.
I’m learning to figure the self admitted to hospitals with psychosis, the self who is dissociated, the self who is in chronic pain, the self who is medicated, as being no less than the self who is working here at my desk, the self who is publishing essays, the self who is laughing and dancing.
Let me ask you to learn this too.
Let’s remind each other: trust is that you are here.
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On an afternoon about halfway through my stay in the bin I had a panic attack and, because none of the nurses on Station 12 speak English, there was a search for Yay-Crew. Intercoms through the building buzzed for him (alas, using his real name) while I flapped my hands and couldn’t breathe in a room of ineffectual but concerned nurses. Some time—painful, dissociating—passed before he arrived. In American psych wards they restrain you during attacks like these, so I flinched when his frame appeared in the door, but Yay-Crew instead started talking to me in a gentle, steady voice. He asked me if something had happened to trigger the attack. I managed to explain that I’d become confused because I couldn’t remember how Van Gogh had committed suicide (a story I know by heart, so forgetting it alarmed me), and Yay-Crew responded by telling me he’d recently seen a Van Gogh exhibition, and was surprised at how small the canvases are, just this big, and how yellow and vibrant the suns and flowers are. He swept his hands through the air slowly and gracefully. I followed the sound of his voice and tried to find the yellows that he described. I asked him, once language had returned, if he was an optimist, saying he must be in order to be an emergency-room psychiatrist, and he said, simply, with no power in his eyes, only tiredness and sincerity, “Yes. I am.”
As he would later congratulate me on my tremendous accomplishment of surviving, he then congratulated me on pulling myself out of the panic attack by listening to him. It was then that I trusted him: not because of his congratulations, but because he had spoken to me in an equal exchange, and he’d listened to me and heard me, and perhaps we’d even had a conversation. I realize only now, as I write the words, that I trusted him because he had trusted me.
If I ever find myself sitting across from you, in an ER, or a clinic, or in your private practice, while you observe my presenting symptoms, categorize what you see according to your encyclopedic knowledge, mentally summarize my problems into diagnoses and possible etiologies and treatments, and speak to me of your “plan of attack,” or how we’re going to “beat this thing,” I hope that you might also speak to me of flowers and suns and the color yellow, and of the world being just this big, and of your optimism, and of my many pieces that are all somehow here, lingering, remembering, and of some ways we might start putting things together, again, or for the first time, or letting them stay in pieces, just honoring that they are here, that you are here, and so am I.
Yours,
Johanna Hedva
This text’s many drafts received the thoughtful attention, guidance, and care of Johannes Beck, Emma Borges-Scott, Joey Cannizzaro, Carolyn Lazard, Timothy Murray, Seren Sensei, and Constantina Zavitsanos. Gratitude to the Take Care symposium in Berlin, and particularly Neve Be, for their support. Thanks to Benjamin Block, Julia Bonn, Regina Gehrmann, Linda Hoag, Wojciech Kosma, Franz Kratochwil, Linda Owen, Stefanie Rogoll, Dr. Scherk-Weber, Helge Streller, the staff at Jüdisches Krankenhaus Berlin, and the friends and family who stayed close to me when I was far away.