Chapter 1
Patient’s skin is jaundiced, which often makes his friends ask him where he got such a good tan. But his face, clean-shaven, and his receding hairline accentuate the weird pallor underneath. His glasses that cling to the bridge of his nose look in danger of sliding off and falling to the floor. His mouth is dry. He’s nervous, fearful of what your examination will reveal. He searches your face for clues as you ask him about his symptoms. He knows that his body has betrayed him, but because his illness is long term, and he and his illness have become the most intimate of enemies, living together, waking, sleeping, eating, working, sharing the same lover, the same joys and despairs, he’s used to that. What he’s scared of, at this moment, is that you, his doctor, will also betray him. That you will look at him and see—well, something like a monster.
Not like Predator or Alien, though not entirely unlike them. More a monster like one of the walking dead: a zombie who hasn’t yet died, say: a former human being who turned into a monster when he was twenty-six, who, when he looked into the toilet bowl as he took a morning piss, watched a thick black swirl of blood drifting lazily down through the toilet water, drifting and diffusing into a black cloud, an alchemical transformation like lead into gold, except the gold means death, means sickness, means weakness, means pain, means fear, means a steel wall rising up between him and everything he thought he was—at least up to the moment of the piss touching the water when he found himself splitting in two, his supposed well self trapped on one side of the steel; while the sick self, this invalid and invalid pisser of blood, finds himself marooned on the other side, staring down at the cloud that by now has sunk to the bottom of the bowl and almost seems to pulsate, heavy and dark, but no, not like a black hole, not like the inhuman void inside a zombie’s head, but almost worse than that: black holes are too far away for us to care about, zombies function too much at a tangent to mortal facts. And his urine turned bloody, unmythic, prosaic, undeniably real, is a truly bewildering fact, his mind denying what his eyes are telling him.
And you as you examine him, whether or not you experience your own body’s inevitable betrayal years from now or, if you’re unlucky, tomorrow, next week, next year, given your professional protocols, your science, your technology, your fees, what would it mean if part of your job was to witness how a human being turns into a monster—for bloody urine and zombies and black holes do in fact correspond to the irrational erupting into something as common as taking a piss. The blood he’s seeing he shouldn’t be seeing. And in his own eyes, at least, and in his fear, he thinks, What’s wrong with me? I know this isn’t happening, not to me. Except it is. But it’s hard to bring together the sick and the well self, as if the sick self were a kind of monster—a monster which your profession, kindly meant, calls “the patient”.
By now you’re protesting, Aren’t you being a little melodramatic? I don’t see my patients as monsters, their sickness isn’t all they are, their bodies are just bodies in which something has gone wrong. In some cases, what’s wrong is serious, deathly serious. In other cases, it’s just routine, a scratch, really, nothing that can’t be fixed through training, through x-rays and pills, shots and scalpels, through procedures. Fear of mistakes is of course a part of it, since a mistake can have lethal outcomes: but that’s why we’re studying so we don’t make mistakes.
But still, the monster is afraid when he sits down in a chair and waits to be called through the closed doors that mark off the waiting room from what lies behind those doors. Deep down, as he waits for you to ask him why he’s here, what’s wrong, where it hurts, his body is staging a protest, an unsettling and insidious revolt—but why? And what if, as he steps through the door, the walking dead are lurking in the hallways and his mind, for just a split second before it turns into a zombie mind, should cry out, Doctor, help me! Save me! Don’t let me turn into a monster! What if that was what was at stake for this monster-who-pisses-blood, as he stares at you staring back at him?
Chapter 2
When he was 26 years old, he went to some motorcycle races in Loudon, New Hampshire, and watched a drunken biker go wildassing down the dirt road in the campground and drive off into the trees until he couldn’t see him but could only hear him as he smashed into something, his Harley roaring, the biker shouting obscenities, and then the motor abruptly going dead. Just seconds ago, as he was watching the biker and pissing in the brush, he noticed for the second time something odd about his urine, something he first noticed several weeks ago—as if it were tainted a muddy brown. Two years will go by until he finally gets his diagnosis: a rare blood disease, PNH, short for paroxysmal nocturnal hemoglobinuria. During those two years, he’ll feel like that biker, a little crazy, out of control, exhilarated, but then terrified.
For what happens to him is this: about every six weeks, and whenever he comes down with a cold or flu, he begins to piss blood, lots and lots of blood, and it makes him exhausted, depressed, it sets his nerves against themselves, he’s frightened, he can’t understand how this is happening to him. After all, he had asthma, serious asthma as a kid, and he overcame that. So why this?
But why not this? This is planet Earth, isn’t it? What else did he expect on planet Earth?
But then a strange thing happens: after a week, and if it’s a more serious episode, ten days, his urine starts to clear, his depression lifts, he feels life surging back into him, he’s almost euphoric. At the same time, he recognizes that this seesawing back and forth, these cyclic highs and lows are beginning to define his personality in ways he can’t control: he scrutinizes his body as if he were spying on it, he stares into the frosted lion-face of a huge frozen sunflower just outside his window, and realizes that if he dies, what he’ll miss as much as people are these moments of heightened perception: each kernel in its cask of ice shines separate. And suddenly the sunflower, bleak, otherworldly, seems like a compound eye looking back at him, not to return his stare but taking him in as just another part of the scene, no more important than the mirror behind him, which he can’t see but the sunflower can, looking not only at his face but the back of his head reflected in the glass, which means no more to the sunflower than the stack of books on his desk, the sweater draped over a chair, the lamp in the corner about to be switched on as the sun is blocked out by a neighbor’s house. He feels how unadorned and naked this moment is: but seeing in this way elates him. All his life he’s yearned for a certain kind of intensity—and now it’s here.
His life will be ruled by that cycle day in day out for more than twenty-five years. Repeatedly hospitalized for hemolytic crises, he will almost die, not once but twice—or at least that’s the way it feels. As he grips the rails of his hospital bed, his heart speeds up, it goes into fibrillation—it doesn’t pound in his ears the way people sometimes say, the sensation is much subtler, the hammer of a piano key swathed in velvet, reverberating like a far away echo in his head while he floats up above his body and watches himself almost fall to the tiled floor when he tries to go to the bathroom so that he can continue to piss and piss something like 40% of his red blood cells, such that his hematocrit drops from a 33 to a 19 in two days—terminology and statistics that would mean nothing to most people, but at least in a clinical way will make sense to you. (For a layman, imagine what breathing would be like if you were instantly transported from sea level to the top of a high mountain.) And no matter what his rational mind tells him, that his illness is a physical condition, a random piece of bad hematopoietic luck, and that he shouldn’t make a metaphor out of what after all is only a disease, in his heart he knows that his illness is Predator, is the Alien: the part of himself that needs to deny he is sick can blast the monster out into space, but the monster is always going to claw its way back to attack him.
So here he is hunched in his hospital bed, listening to that muffled single note filling up his ears, and suddenly he can’t think, can’t breathe, his lungs hurt, he’s gasping, he thinks he’s going to die as in a completely flat, almost clinical voice, his brain says to him, This is it, it’s over—when out of nowhere, someone’s hand reaches out to hold his hand, that person telling him that he’s pushed the emergency button, and that you, the dying one, are going to be OK…saying over and over, Don’t worry, I’m here, you’re going to be OK, even as the thought I can’t breathe lights up the darkness encroaching on the brain. Not metaphorical darkness, but the actual darkness of passing out, of going unconscious, of being nothing, in that stasis of pre-zombie death before his total transformation into a mindless, murderous, flesh-eating ghoul. How ridiculous death is, how completely narcissistic, uncaring of anyone or anything.
But the person who is holding his hand, his roommate, has had a spinal tap for a cancerous tumor on his spinal cord. His prognosis is terminal. And yet, despite the explosive headache from the needle puncturing his spinal cord, despite his debilitation and weakness and how his headache increases a hundred fold by having to sit up, stand, and walk across the room, this utter stranger and fellow monster won’t let go of his hand—that is, my hand: my fingernails bloodless, palms yellow from jaundice, finger tips icy cold, until the nurses arrive with oxygen and take over.
An act of kindness and physical bravery that stands out beyond all other compassionate gestures that I as monster have experienced in close to forty years of living with PNH—my unpronounceable, undignified, almost ludicrous disease.
When I was first diagnosed, my doctor, in a truly bizarre coincidence told me that the median life expectancy from diagnosis to death was ten years, and that a third of the patients died after five—and the reason he knew this wasn’t only because he was my doctor, but because he also had PNH. I remember staring at him as he stared at me: and between the two of us there was a sort of shared horror and sympathy. As if we saw in the other the pale zombie that our shared disease might one day turn us into.
In his case, the old Latin tag, Medice, cura te ipsum, Physician, heal thyself, must have sounded like a grim joke. All professional and emotional distance collapsed when we sat face to face, him telling me what I faced which is what he faced too. The light in the examination room fell through the window onto his hands: large soft pale hands that I can still see in front of me, the knuckles hairless, the veins bright blue against the pallor. He told me that the fact that we had the disease at all, which isn’t inherited but acquired, was a statistical fluke: the chances of us having PNH were literally one in a million, which means that in the entire United States, out of a population of 330 million, we were two out of 330 people—which, as I tried to make the statistic comprehensible, is about the same number of seats in one of the movie theaters in a multi-plex.
And as to the coincidence that he should be my doctor, how to compute those odds? I couldn’t help but feel that there was something fateful about this random chance, something verging on the mystical/magical, as if in my own Kafkaesque little kingdom of sickness, the doctor, in order to treat me, had to also suffer from my disease: he was my secret sharer, my fellow pale-faced monster. But wasn’t there also a way in which we creeped each other out? My hematocrit was a few points higher than his which, I’m ashamed to say, secretly pleased me. For if I’m to be absolutely honest, and with the absurd vanity and self-absorption of the sick, part of me worried that he was jealous of my numbers, even angry. Yet even back then I think I knew enough to know that the paltry difference between our hematocrits was clinically meaningless. Probably our unease, our dis-ease around each other, was inevitable. How not to feel, whenever he looked at me or I at him, a faint touch of revulsion at having to peer into each other’s pallor?
All this was back in the late seventies and early eighties, decades before Eculizumab, when the only treatments seemed to be prednisone, bone marrow transplantation, and transfusion. Back then, I stood a good chance of stroking out from a blood clot. But Eculizumab, in 2010, was the most expensive drug in the world: $409,500 a year for one US patient. All that money to stop me from pissing blood? I have the ridiculous image of myself as a fortune-teller, and the toilet bowl as a crystal ball in which I’m trying to read my own eventual fate. Whenever I have to do what all of us must do several times each day, in some remote part of the brain I’m made barely aware of a shadowy, incipient panic: what will be revealed to me as I stare into those depths? The whole business sounds so stupid and overblown: but still, I can’t keep from wondering who I might have been without my illness even as I reckon with the person it’s made me be.
Chapter 3
Slowly, over many years, and for no reason that anyone can name, my condition improves, my hematocrit rising from a 29 or 30 to a reliable low normal, or just shy of low normal, a 39 or 40. Of course my obsessive focus on these numbers, the fact that 39 doesn’t fall in the normal range and makes me feel like a failure, isn’t medicine’s fault. But my need to reassure myself that I’m normal, even when I know I’m not; my need to resist medicalizing myself, even as I learn the medical terminology for PNH—activation of complement, complement inhibitor, monoclonal antibody, complement component 5, C5 for short—only makes me that much more alert to my illness as a kind of allegory; an allegory that as I age, having outlived the odds by thirty-five years, still asserts its bewildering power. Despite the fact that my physical energy feels the same whether my hematocrit is 39 or 40, nonetheless that single step down the scale threatens me with impending disaster. Maybe the monster I’m most like isn’t Predator or Alien, but Werewolf dreading his oncoming change when my human eyes become wolf eyes, my teeth fangs, thick fur sprouting all over me as I get down on all fours and throw back my wolf head and howl—my body a nightmare of revolt. Yet how elated I feel when my hematocrit hits forty! It’s as if I’ve been freed from that fearful cycle, as if the full moon has come and gone—at least until my next blood test. Perhaps the biggest change is that the blood in my urine is barely noticeable—I no longer scrutinize the toilet water for that telltale, diffusing stream of blackness heavily descending.
And yet…even though I like to tell myself that my illness has stopped dictating the terms of my life, my dearest enemy and I both know that all we’ve really done is come to a fragile truce. Maybe my monster metaphor needs to give way to something more subtle— let’s say the way a tree trunk grows over and around a piece of barbwire until the wire is wholly invisible. Or think of me as an astronaut in his spacesuit who has learned to maneuver so naturally in the zero gravity of deep space that I look no different than anyone else going about their daily lives. Except at every moment I’m registering Earth’s gravity, and measuring the difference between it, and the unbearable lightness that surrounds me in my own little private void.
You could say that the very concept of being normal haunts me. Slowly I gain weight, from an almost skeletal 133 pounds at my low to a steady 163 pounds at my current weight. I publish books, I have a job, my life begins to even out, I no longer worry quite so much about dying, though I have to confess, the idea of a future seems ludicrous to me even as I plan for it. But Alien Tom, Predator Tom, Zombie Tom, Werewolf Tom still live inside Writer Tom, Parent Tom, Teacher Tom, Not-Quite-Well-Not-Quite-Sick Tom. At times I’m afflicted by the thought that I might even miss those days of illness—not the physical misery of course, but the intensity and clarity of the struggle to stay alive and lead a semi-normal life.
Chapter 4
Now let’s jump forward twenty-five years. I’ve published many books of poems, written plays, done a translation from the ancient Greek of Euripides’ play, Heracles. I’ve written a book of essays for egghead literary people like me. But about a decade ago, I started doing foreign journalism, in part about refugee issues, in places like Mogadishu, Somalia, Libya, Iraq, Lebanon, Syria—places in which the risks I run are far more serious than not having access to a high-tech hospital. Given my age and my unpredictable health, why would I choose to go to places like Somalia? Why take such risks? After all, if you do this kind of work, the chances are that you’ll be going to a place where there is a war, has been a war, will be a war. And as people often ask me, Aren’t you afraid? The short answer is Yes!… but only beforehand—when I’m actually out in a refugee camp talking to people, I’m so focused on listening that there’s no room for fear. And anyway, fear wouldn’t help me do my job.
Of course, it’s more complicated than that: there’s a difference between the rational fear that you’re deliberately putting yourself in a situation where everything is OK until it’s not OK, and then it’s too late; and the overpowering fear of thinking that you’re going to die, not at some distant date, but right now, right here. So maybe my decision to take these risks is a way to forge a truce between the well self and the sick self? After all, when I was 26, I had trained to be an anthropologist: I could think of nothing more interesting and meaningful than to live my life among people radically different from myself, with the intention of trying to understand them in terms that they themselves would recognize. But of course all that came to an abrupt end when I saw myself mirrored back to me by my double, my doctor—harbinger of my future self forty years on as I am forty years older now since I first met him. I feel certain he must have died by now. I did a half-hearted Google search, but part of me wants not to know. I’ve conveniently forgotten his name. Maybe it’s best if I leave him in limbo, a familiar, a ghost not quite a ghost—at least not yet.
Back in my early twenties before I got ill, I worked in southern Mexico in San Cristobal de Las Casas for Gertrude Blom, the gutsy, gifted and deeply eccentric archaeologist and photographer who spent years with the Lacandones, the tribe most like the ancient Maya in language and customs. To know the Lacandones, to joke with them, to hold one of their hunting bows in your hands, and to have a young Mayan named Cayum Yuk Mosh teach you which particular type of arrow to use for a fish, a jaguar, a frog, a bird, stands out in my mind as one kind of milestone. But when my illness got diagnosed, I had no one to teach me how to survive one day to the next: now the adventure, if you could call it that, was the adventure of trying to stay alive. And when I reached a certain stage of equilibrium about ten years ago, was my decision to start going to places like Mogadishu just me trying to fool myself into thinking that I’m once again physically normal? Or perhaps I’m just trying to make up for lost time, cramming in to the years I have left what I couldn’t do during those years of sickness?
But regardless of my compensatory impulses, the journalism has become its own passion—a passion for the people I meet, for the need to forget myself in order to do my job. I remember the young Lebanese man who took me Qana in southern Lebanon after the 2006 Israeli Lebanese War, and how he told me the story of a little girl whom he found buried up to the neck in rubble after her village had been bombed. In the smoke and darkness, he uncovered her with his bare hands up to her armpits and lifted her free—only to discover that, as he said, She was not there. By which he meant that the bottom half of her was not there. She’d been blown in half. He looked as if he were about to tear up, so I told him he didn’t have to go on with his story. But he looked me in the eye, and said: “I’ll tell you what happened, but you must promise to tell my story.” I’d never felt such a sense of responsibility, almost a kind of commission, in all my life.
Perhaps my telling you this now is a way to convince you and myself that my illness has led to a greater understanding of what we call suffering—a notoriously private, almost incommunicable state in which each of us, locked inside our bodies, can only express ourselves, when the pain reaches a certain intensity, with half-human grunts, groans, and sighs. So let me qualify what I mean by understanding: one thing I think is crucial is to find a way to acknowledge the limits of what you can and cannot know of another person’s pain. For example, not for one second do I believe that I’m ever going to understand what the young Somali woman was feeling during a famine that killed 250,000 people, most of them children, as she sat outside the perimeter fence of the refugee camp in Dadaab in north east Kenya, her two young boys sitting quietly beside her, her baby daughter asleep in her arms as she told me how first her goats died, then her crops dried up, then her husband was killed by a militia—and so she walked across the desert from Mogadishu to get to the camp.
All that I knew about her was what she told me, and what I observed. To pretend to know more would just be me projecting my feelings onto hers. As the poet Thom Gunn writes about the limits of empathy: “Save the word / empathy, sweetheart, / for your freshman essays. / Doesn’t it make / a rather large / claim?” In Gunn’s canny understanding, “empathy” is way too overweening. The best we can do, in our isolated selves, is the more modest “sympathy.” So sympathy, rather than empathy, has become for me not only a poetic and journalistic principle, but a rule of thumb in dealing with people in general: perhaps it’s a rule that might prove useful to some of you.
And within those more modest bounds, I wonder if the intensity of illness and of being in a place like Mogadishu vibrate on not dissimilar wavelengths. Just as my disease has led me to out of the way mental places, and made me feel solidarity with my fellow sufferer in the hospital bed next to me, a drain in his gut, a port for blood in his upper chest, the tube of the implanted catheter faintly outlined by the skin above his right nipple, so has my journalism led me to places and people I couldn’t have met and come to know in any other way—a camel seller, the sister of a suicide bomber, a tank mechanic who loves his tanks the way other people love their dogs.
And in these people’s presences, maybe my journalism is a way of transforming the self-absorbed drama of being ill, in which you pay obsessive attention to the back of your own hand on the rumpled sheet, as if it held a clue to the course of your sickness, into a more outwardly directed act of attention. This kind of intense focus is similar to what Clifford Geertz, the anthropologist, once called “thick description,” in which you render through careful and meticulous detail what appears to be going on, rather than assuming you know—which seem like qualities also found in a good clinician. In my case, you could say that the traumatic self-absorption of sickness transforms into the hyper-alert awareness of my role as journalist, in which my personal concerns vanish into what other people are wearing, saying, eating, into the expressions on their faces, into the way their gestures reinforce or undermine what they’re saying. Without meaning to, by paying close attention, I render myself faceless so that their faces can come more clearly forward.
It’s as if this little disappearing act that I’m calling journalism helps me balance out my years of illness with the person I am now. And now that that person has achieved a little more breathing room, and even though who he was before he became ill feels so distant that that young man might as well have been living in another dimension, the sick person inside me gives a little shove to the well person to get out there in the field and keep my concentration focused outward.
Chapter 5
But there’s another level to all this that goes beyond my, or anyone’s, limited perspective. I once spent a day interviewing refugees from all over east Africa, and as they told me stories of almost unimaginable suffering—never once breaking down, telling the most terrible things in dead level voices—there were so many common threads that by the end of the day they wove together into a tapestry of dread and fear, but also of human endurance. Always there were gunmen, sometimes mutilation, sometimes severed heads, arms, legs; or slow starvation; or bombs falling on a house, killing a mother or a father or a child; or sometimes wiping out at random, between breakfast and a trip to the market, an entire extended family, except for the one who told the tale. And as I listened, I became acutely aware of each person’s physical presence, and of just how fragile our bodies are—arms, legs, heads scarred, bruised, beaten; or just subject to normal aging in sagging, slackening muscles so that no matter how protected or insulated we are from the world’s violence, all bodies in time are damaged bodies. And I came to realize that what I was trying to do with my journalism, and of course with my poetry, was to find a way, which wasn’t phony or sentimental, to connect with all that suffering, and to add my slender thread to all the others.
As Adrienne Rich once put it in her sequence, “Contradictions,” the problem is how “to live in a damaged body” and yet find ways “to connect, without hysteria, the pain / of any one’s body with the pain of the body’s world.” And because, as Rich puts it, we live “in a world where pain is meant to be gagged,” there will always be those who will want to twist that pain to serve their cause. I once met in Nairobi a suspected Rwandan genocidaire who told me that because Tutsis had killed Hutus in previous pogroms, that the Hutus in massacring the Tutsis were only doing what had to be done. He said, with an air of sadness and aggrieved outrage, that the worldwide publicity generated by the genocide was in fact an attempt to gag the real victims. And yet the man’s pain was real, just as the massacres on both sides were real. The contradiction isn’t one that I know how to live with, resolve, or dismiss. And yet I don’t wish that I’d never met this man. You could say that my journalism, as much as my illness, has brought me into far more intimate contact with the body’s world, both the misshapen and the beautiful.
And let’s be honest with each other: is charging close to half a million dollars a year for a drug not also a kind of abomination—certainly in another moral universe than genocide, but how many light years away? Theoretical physics tells us that once you leave the third dimension, there are worlds and anti-worlds unknown to us. And since the theory states that of all worlds possible, all things that are humanly conceivable can exist, why shouldn’t one of these worlds distribute Eculizumab for free?
At the deepest level—and I have a hunch this is the same wellspring that poetry comes from—my need to see things for myself is a way of putting our physical fragility into perspective. Illness has grounded my experience in what Seamus Heaney once called “the primal reach into the physical.” So now, when I think about Iraq, I know what the Tigris and Euphrates Rivers look like. In Mogadishu, I see the green sea, the red earth, and the half-destroyed cathedral, the ceiling caved in, the glass blown out of the rose window, but the walls still soaring upward. In Lebanon, I see my tank mechanic on his back in the dirt reaching up inside his tank, as if he were the doctor and the tank his patient, his hands doing something up inside the tank that looks intimate, private, while the tank, as he gently raps on it with his wrench, talks back to him in little pings and clangs.
Acknowledgements
I would like to thank Nene Humphrey for her kind permission to use her painting, entitled Cerebrum as it appears at the top of the story. Detail: embroidery on digital print, fabric, steel. 0.5″ x 6.5″ x 2″ 2004.
About the author
Tom Sleigh is a poet and essayist who teaches at Hunter College. His new book, The King’s Touch, will be published by Graywolf in Feb. 2022. Click here to learn more.