FEBRUARY 29, 2016
I woke up from one dream into another.
I guess I’d written time was honey. Wrote myself a landscape. Slow scenery,
combed gold across the mouth and the eye.
— Hillary Gravendyk, Harm
I READ Hillary Gravendyk’s Harm about three years ago, just after my partner’s father suffered a brain hemorrhage. I am driving to the hospital daily to be with the entire family — his mother, his father, his father’s aunties who flew in from England. The review copy of Gravendyk’s book has arrived with a notecard and an unsteady line from the author herself. Something like, “I hope you enjoy my book.” (I lent this copy of Harm to someone. I don’t know to whom, what shelf it’s resting on, with her note inside.)
My partner’s father, Jami, is in terrible shape. When all is said and done, he has undergone multiple brain surgeries and is in the hospital for two months. We all submit to a crash course on what happens when you don’t walk for several weeks. The biggest problem, we find, is that your bowels stop moving. Your belly fills; you can aspirate fluid into your lungs; then pneumonia. The aunties often touch Jami’s belly, distended and stiff. A tube is inserted in his nose and down into his gut to pump out fluid. The process of the tube’s insertion is very painful. Jami manages to pull this tube out almost daily, despite the nurses restraining his hands. “Someone’s hands bound loosely down,” Gravendyk wrote. “One hand charred black and almost / Black, a color like green. Wait — mine.”
I am uncertain what to do with myself. I want to be present with the family, even when my partner has to work. I want to be his representative, tell him what happened, be an ear for his mother. But mostly we wait for Jami to wake from napping, or for a nurse or doctor to come by and tell us something. So I read, and I read a lot. I read Harm multiple times, feeling a deep gratitude to Gravendyk and to fate for putting her remarkable book in my hands at that moment. It gives me insight into Jami’s experience there in the hospital. He is awake in the hospital bed and will suddenly call out for one of his pet cats, thinking he is home. Or for a daughter who is hundreds of miles away. Sometimes he thinks he is in Pakistan, his home country. Later, he tells me that when he woke up from surgery, he thought he had lived through a plane crash in Afghanistan — a country he has not been to since his 20s. We are all baffled by the depth of his disorientation. We worry over its permanence, how yoked it is to the bleeding in his brain. Gravendyk shows me how the hospital experience alone, never mind the illness and the pain, can be disorienting for the patient. “How the sun turns over the body, returning / Light like a sweating hand covering the face / Here, the atmosphere of a closed box.”
Gravendyk suffered from idiopathic pulmonary fibrosis (or IPF) for 11 years. At the age of 30, she underwent a double lung transplant. Harm is about her experience — “an attempt to recover the time that was lost to my waking mind during surgery and for several days afterward.” IPF patients are the most common recipients of lung transplants in the United States. It reduces the risk of death by 75 percent. A friend of mine, who is earning his medical degree, happens to assist during a double lung transplant. He flies to Los Angeles and is driven with the team to the hospital. “It’s the worst hospital I have ever, ever seen,” he says. I’m not entirely sure what this means. Filth? Poor staffing? Overcrowding? All of the above? There is a man with several people around him who are procuring his organs for several different donor recipients. “Hands plunging into that mess of organs and blood, grafting an other to the windpipe, to the underside of the heart.” The lead doctor on my friend’s team inserts a catheter of clear fluid that acts as a preservative into the heart and nicks it at its base. The heart trembles, continues to try to work. My friend suctions up the blood that pours out. Then it is only clear fluid. The lungs are white with it. The heart stops, the man fully dead now. They extract the lungs, rush to the airport and back to the home hospital. My friend stays for the first lung’s attachment — watches it fill, shifting from white to pink. I tell him it must have been amazing to see that transformation during his first transplant. The visible change in the lungs that makes it clear the transplant is a success. “The lungs,” Susan Sontag writes, “are part of the upper, spiritualized body.” My friend says, “The craziest thing was seeing all the people harvesting the organs from the donor. They opened him like a clam.”
“[Harm] has a lot of resonance for me given that so much of my life has been lived in the midst of unmanageable physical harms and that responses to those harms often takes the form of another kind of harm: cure.” Gravendyk’s notion of harm is nearly identical to the original concept of trauma. Initially, its existence in English was solely for medical purposes, and came into usage in the 1600s. That early understanding of trauma involved an external agent. Something from without the body is suddenly within, for good or for ill. As Roger Luckhurst writes in The Trauma Question, “What wounded and what cured shared the same term: physicians applied traumatic herbs or balsams to injuries.” Thus whatever provoked a systemic reaction in the body, in wounding or curing, could be described as a trauma. This definition continued, and was used almost exclusively by those in the physical sciences, for centuries.
I know what Gravendyk means — the tethering of cure and harm or trauma. Though I experienced nowhere near the trauma of her (or Jami’s) surgery, I have also gone under the knife. I was once a serious violinist, one of three accepted to the USC Thornton School of Music for my bachelor’s. I had had arm pain the year before, but I underwent physical therapy and recovered. Once I started college, however, the pain came back in full force. While home for the holidays, I had a nerve conduction test. This involves the insertion of a long needle into your nerve. Shocks are sent in. The current’s speed is then measured as a means of determining if there is nerve damage (where the current slows down). There was bilateral nerve damage — two slim muscles squeezing the radial nerves in both my forearms. Those muscles were being pushed together by severely inflamed tendons in my elbows. My nerve sheaths were getting worn down. My doctor likened this to the rubber casing around an electrical wire being rubbed away — the wire becomes exposed. I pictured sparks. I couldn’t hold much for very long. Picking up a gallon of milk was physically impossible. At parties, I got drunker, faster, simply because I couldn’t hold a full cup of beer for longer than ten minutes.
I underwent surgery on both arms that summer. The surgeon described what he saw once he opened me up. He rendered the worn nerve sheaths with a whit sound and an extended finger tracing a wide U in the air. When I first saw my stitches, I almost passed out. “At the sight of my own body, I turn cold, light at the seams.” I couldn’t use my arms for weeks, couldn’t carry heavy things for months. I tried to help carry a table, but it was too soon, and I felt something tear inside. I didn’t play violin for half a year. When I finally put it to my neck it felt awkward, my brain worrying any discomfort into pain.
After a few weeks, someone suggests to sit Jami up straight in his bed. This gives him an incredible amount of clarity, somehow. The aunties have brought a board game, and they ask him if he wants to play, hoping to engage his brain. We set it up, roll dice, take our turns. Then it’s Jami’s turn — I hand him the dice. He turns them between his fingers, begins to rattle them in his palm, staring at the board. Rattling, rattling. He does this for about a minute before one of the aunties tells him to drop them. Then he is confused. The brain lost in an infinite loop, the rattling, the task. “Imagine a carriage wheel turning on sand.”
When you push a stethoscope to the chest of a person suffering from IPF, tell her to inhale, you hear the sound of Velcro tearing apart. While the causes of IPF are unknown, there are some clear correlations, like exposure to dust (wood, coal, metal, stone) or silica. Usually IPF patients are men age 50 or older, smokers. Gravendyk wasn’t exposed to any of these factors, as far as I know. She mentions silica only once. Looking at x-rays of an IPF patient’s chest, you see small cysts grouped together. They call this “honeycombing” or “honeycomb lung.” “Hived lung, yellow and tangled with blue air.” “Honeycomb lung you / were whiter then.” It is believed that these are wounds from the lung’s attempts to heal itself. Harm in both disease and cure. “Little hive buried in the chest, little swarm / I know perfectly what you mean.”
I hurt my foot one day, so I wrap it, favor it. The pain persists. I wrap it tighter, but there’s still pain. Tighter still — so tight I lose feeling in my big toe, having stunned the nerve on the roof of my foot. The other foot begins to hurt, for no apparent reason. It then feels like it is spinning out into something else entirely. I start going to doctors, then specialists. They are roundly baffled. In Tender Points, the poet Amy Berkowitz writes, “[P]ain is something more complex and unknowable than a puzzle. And yet, when it comes to the mystery of my pain, I can’t resist the impulse to solve it. I have all these pieces, and I can’t stop my hands from wanting to jam them together until some sense emerges.” The pain increases, to the point where I can walk only about a half mile a day. I try more doctors, one of whom tells me I simply need to stretch my hamstrings. He shames me so thoroughly that I drive home crying and continue to cry once I crawl into bed.
When I had arm pain in college, people were willing to pin where the fault lay. Often, they located it in me. One fellow musician told me my pain was likely psychological — my mind was trying to stop me from playing. Sontag writes, “Psychological theories of illness are a powerful means of placing blame on the ill. Patients who are instructed that they have, unwittingly, caused their disease are also being made to feel they deserved it.” It was clear that the lack of a visible source of pain confused many doctors. It even made some angry, and often that anger focused itself on me. I was, after all, the agent who put this unsolvable puzzle before them. Elaine Scarry writes:
Physical pain happens, of course, not several miles below our feet or many miles above our heads but within the bodies of persons who inhabit the world through which we make our way, and who may at any moment be separated from us by only a space of several inches…[Pain] achieves its aversiveness in part by bringing about, even within the radius of several feet, this absolute split between one’s sense of one’s own reality with the realities of other persons.
While I’m visiting doctors for the pain in my feet, my arms begin to hurt, then a particular knuckle on my right hand. My physical therapist is convinced that I have arthritis. I go to a rheumatologist and get x-rays — nothing. Sontag: “The speculations of the ancient world made disease most often an instrument of divine wrath.” The physical therapist tells me the pain is because I am weak. He is in incredible shape, and usually works with some of the premiere college athletes in the country. Maybe I am weak. I do everything he says, all the exercises, religiously. This has no impact. While hospitalized, the poet Chika Sagawa writes that, “I feel like my illness is not my own. I just don’t feel like I own it.” My pain increases or decreases randomly. While walking five blocks to my car one day the pain in my feet escalates terribly. I am unsure if I can get to the car, and I worry about what to do. Should I sit on the sidewalk? Then bam, the pain is gone. “What the fuck is going on?” I think. Woolf writes, “Those great wars which the body wages with the mind a slave to it.”
My sister convinces me to go to a therapist. The therapist asks, “What is your biggest fear?” “That I will lose the ability to walk altogether,” I say. “That I will be in a wheelchair.” Eula Biss writes, “Not all of us think of health as a transient state that we may be exiled from without warning. Some prefer health as an identity … When health becomes an identity, sickness becomes not something that happens to you, but who you are.”
All the people I know who suffer from chronic pain, each one of them, has also suffered severe psychological trauma. “The problem is / You can’t put pain on trial,” writes Berkowitz.
In 2014, I reach out to Gravendyk to invite her to read at a series I curate during the summers. I had realized she lived in Southern California, and I am excited at the prospect of meeting her. She is gracious and willing, inviting her friend Cynthia Arrieu-King to read with her. “Sooner is probably better given the uncertainty of my health,” she writes. I schedule her and Cindy for the first event of that season. Soon after, I’m in the audience at another reading, when the host suddenly announces that Gravendyk has passed away. I am stunned. He says kind words about her, reads one of her poems, and moves on. My mind is everywhere, I am crying quietly. The survival rate of a lung transplant for IPF after five years is 50 to 56 percent.
Audre Lorde writes, “We all have to die at least once.” When Jami was young and in Karachi, he rode a motorcycle. After crashing one night, he came home and thought he was applying povidone-iodine but grabbed the wrong bottle, poured mercury on his wounds. He collapsed, his mother somehow got him to a hospital very quickly, and he recovered. While he was unconscious, a red-haired man appeared and told Jami to come with him. Jami balked, said he wanted to stay. Telling the story, he thinks of this figure as death, personified. He tells me how he talked death out of taking him. Jami said the same man came back when he had his brain hemorrhage, and he once again convinced death to leave him be. Sontag writes, “[D]eath is the obscene mystery, the ultimate affront, the thing that cannot be controlled.” Yet here Jami was, controlling it. After agreeing, the man told him, “The next time you see me, you will have no choice.”
The only healer I see consistently for my foot pain is an acupuncturist. For most of my life I have had a terrible aversion to needles, but the pain is so intense, and my depression in the face of it is so numbing, that I decide fuck it. And it works — my pain diminishes, consistently, for weeks. Then I am at a holiday work party with my partner. He’s networking while our designated driver is getting drunker and drunker. My feet begin to hurt worse than they have in some time. Eventually they hurt so much I excuse myself; I have to sit down. That night, the pain is so bad that I head home early, alone. I cry in the taxi, looking out the window. I’m not just sad — I’m terrified and angry. I make my hands into fists, pressing my nails into my palms. “The problem of suffering as a set of values is the way a feather crumples at the edge of any flame. Cringing into itself. How hard to play to that smallest audience, where it’s just your own eyes tunneling to your own chest.” Then I think of what my acupuncturist said when my pain began to recede: “The pain may come back, but don’t worry. It’s not a simple upward trajectory. There will be dips.” This makes me feel somewhat less powerless, like the pain isn’t in total control. She foresaw its return. Eve Sedgwick writes, “I’ve never known what I was supposed to ask of my pain.” The only question — the one that has plagued me since the beginning — is “why?” Woolf: “All day, all night the body intervenes … The creature within can only gaze through the pane — it cannot separate off the body like the sheath of a knife or the pod of a pea for a single instant.”
When I finally tell my mother about all this, she explains the existence of pain management specialists — asks me to find one, and quick. I do, though medical bureaucracy never makes anything quick. At the appointment, a medical student enters, asks questions, takes notes, leaves. She returns with the doctor, who says, “So! You’re my mystery patient.” I don’t miss a beat: “I’m everyone’s mystery patient.” Scarry writes:
When one hears about another person’s physical pain, the events happening within the interior of that person’s body may seem to have the remote character of some deep subterranean fact, belonging to an invisible geography that, however portentous, has no reality because it has not yet manifested itself on the visible surface of the earth.
The doctor looks me in the eye, suddenly serious, “It doesn’t matter. We don’t need to know what this is to make you feel better.” And this shocks me.
We schedule another nerve conduction test, just as I had 10 years before — this time in my legs. The technician pushes something like a small metal hammer onto the back of my knee. It presses deep on a nerve, which he zaps, watching a monitor. My leg seizes with the current. He moves the hammer to another point, and presses. I breathe through it, though it is not easy. Another point, then another. Eventually I ask if he’s ever had this done to him. He laughs, “Everyone always asks that.” He has indeed had it done — all the techs have, so they know exactly what they’re inflicting. The conversation started, he proceeds to tell me my nerves are in excellent condition. “You have, like, superhero nerves,” he says. I suppose this is good news. After a current shoots through my nerve and the numbers pop up on his screen, he calls out, “Wow!” Zap — wow! Zap — wow! His supervisor comes in and he invites her to check out my stats. “I’ve seen better,” she says. She is the one who inserts the long needle into the inside of my thigh. When I tense up she admonishes me to relax while she bends and unbends my knee, making the pain worse. Woolf: “this monster, the body, its miracle, its pain.”
I realize this is a story of privileged pain and illness — all of these are. Where others would remain ill or die, here there is treatment or surgery. Insurance is paying; doctors are working to reinstate a quality of life. I think of Muriel Rukeyser’s long poem “The Book of the Dead,” which documents the mining men who inhaled silica and were dying, with no recourse. One says:
Mother, when I die,
I want you to have them open me up and
see if that dust killed me.
Try to get compensation
I never met Gravendyk in person. I saw her read years ago, but didn’t know her work at the time. The intensity of my emotions in response to her death surprises me. Is it simply because we had been emailing recently? Because I am enamored of her poetry? Because she is kind? Because she is young? Or perhaps because, as she writes, “What haunts us is our softness.” I want to pay tribute to Gravendyk at the event where she was supposed to have read. Cindy Arrieu-King agrees to read Gravendyk’s work in her place. Gravendyk’s husband also comes. The readers are all wonderful, and then Cindy begins to read from Harm — from Gravendyk’s own Post-it-noted copy. It is going powerfully, but smoothly. Then Cindy begins reading “Exuberance,” the poem that is often read and circulated after Gravendyk’s death was announced. “To know me as golden is to know me all wrong. Every time I breathe in it / smells rust, like blood, and when I cough there is blood in the air.”
Cindy stops. She covers her mouth with her hand. She begins to cry; I begin to cry. She, incredibly, presses on —
If I were in charge of these special effects, I’d make it thicker; it’s so hard
to take it seriously. Bright little hearts and stars and carnations on a
Let’s have a disaster, a lake made of salt, a blackout. Everything riots and
unspools, the whole room on one side and all the sound winking out.
Cindy finishes “Exuberance” and reads some of Gravendyk’s other poems. I feel like the room is full of people crying, but I don’t look. The applause stops, and I forget to stop and collect myself. I go to the front, choke out a thanks, recommend people get a drink next door. (I know I need one.) After calming myself, I walk over to Cindy and thank her, thank Gravendyk’s husband. He is calm but present, chatting with me about benign things, about Gravendyk, too. His steadiness is braided with kindness, which makes me understand why Harm is for him.
you knew what you were getting
into. Circumstantial organs and my voice
splitting in two. I felt sorry
for love. I felt sorry.
“I forced your hand into mine, though I knew you couldn’t go where I had to go.”
A month or so after meeting the pain management doctor, I visit another doctor who administers different (less invasive) tests. He tells me I have peripheral neuropathy — nerve hypersensitivity. “Your brain is looking for problems,” he says. Ostensibly the brain is doing this to draw my attention to any potential harm in the body, but there is no harm actually there. This doctor is suspicious of the injuries that lead to my arm surgery in college. I tell him the surgeon located a physical issue when he cut them open. His look tells me that he is not convinced, but he doesn’t disagree. The pain management doctor prescribes an antidepressant that is known to treat chronic pain of this nature. It works. It’s a miracle — in part. My pain stops, but so does my ability to shit, orgasm, and sleep. I feel stifled, calcified, stopped up. I am unpleasant to be around. I call a pharmacist to see if there are any supplements I can take to help the lack of orgasm, and she explains there is nothing to aid women with this problem, which enrages me. A month later I go in for a checkup with the pain management specialist.
“No pain!” the doctor says. “That’s great news!”
“Yes, but I can’t orgasm. I’m terribly constipated. My dry mouth is so bad I cough myself awake. I have been able to walk through museums, though — that has been nice.”
“Is going to a museum not worth it? You won’t forfeit orgasms for that?”
“No,” I say. He is joking. I am not. Within two months he has figured out the right mixture of drugs so that I have no more pain — none — with manageable side effects. Doctors don’t know why or how the meds work, and some other doctors have said I don’t have peripheral neuropathy but another chronic pain disorder. The details matter little to me. The pharmaceuticals have continued to be effective for years. When I have flare-ups, the docs up the dosage and watch, tapering them back down. This has been all I’ve needed.
“[Pain’s] resistance to language is not simply one of its incidental or accidental attributes but is essential to what it is,” Scarry writes. The physical sensations in my legs and arms are, perhaps for this reason, difficult to articulate. The pain shot dully on the outsides of my feet, near my Achilles tendons, and burned like flames on the inside of my ankles. At times I felt buzzing. Often I still feel this buzzing or ticking sensation, the nerves crackling away — but this is painless. Sometimes there was a feeling deep in my ankles and legs like a terrible clench — a bright, blurring pain, then a release. Pause. Then again. Again. A beat, in tempo. When I thought about the pain in my extremities, it would intensify — the mind’s eye giving it fuel. Gravendyk: “What, after all, did I show you? / Only how the body betrays every / impulse.” Writing about it now I feel my feet humming on the inside, from ankle to arch.
Jami is moved into assisted care, and the aunties go back to England. Eventually he is home, not terribly different from his old stubborn, funny, storytelling self. A few months later, we are in my partner’s childhood home for Thanksgiving. Their tradition is to go around the table, saying what we are thankful for. Jami is thankful for many things but, he explains, he is especially thankful for his wife — she did so much for him while he was unable to care for himself. “She pulled me from the morass,” he says. Driving home, my partner brings this up as an example of the strides Jami has taken in his recovery. “The fact he used the word ‘morass’ alone blows my mind.”
Audre Lorde writes of her recovery from breast cancer in The Cancer Journals:
I am an anachronism, a spout, like the bee that was never meant to fly. I am not supposed to exist. I carry death around in my body like a condemnation. But I do live. The bee flies. There must be some way to integrate death into living, neither ignoring it nor giving in to it.
Jami is nearly bald, so the deep, terrible scar that traces the dome of his head almost ear to ear shows. He traces it with his fingers often, a nervous habit. He shows it off. Gravendyk: “A long staircase of wounds. Behind: unseen error.” If people ask, he explains and taps the stent on the right side of his skull. It protrudes, a two-inch cylinder, sending any excess blood to his belly. He is not exactly himself — not quite as he used to be. But, considering, he is damn close. Gravendyk writes of her surgery scar, “That tender barrier — breached, we call it cure. But there is none, only different kinds of wonder. Now an engraved avenue stretches across the chest; islands spangle the belly. Call me cyborg, call me monster, miracle. Read the line of my flesh aloud and I’ll listen.”