On not being well

Michael Ancher, "The Sick Girl," 1882

Michael Ancher, “The Sick Girl,” 1882

My mother died when she was 51 and I was 17. Here is how it happened. She had gone to Ohio — we lived in Virginia — to see her own mother, a solitary and sometimes bitter woman; an argument had broken out; my mother was struck by chest pains, and an ambulance took her to the hospital with angina. She’d never had heart problems before. That was on the Fourth of July, 1980. The next day, my father and I drove the hundreds of miles across monotonous mountains to her. Prone in the metal bed, she was pale and distracted. She asked me to rub her back. As I did so a small volcanic spike erupted on the monitor behind her, connected to her chest by wires. We left her, seeming a bit better we imagined, and my father and I went to a Howard Johnson’s somewhere nearby to eat silently. When we returned, the outer hall of the intensive care ward looked strange, congealed, like light glancing off obsidian. Nurses were gathered, and my mother’s beloved aunt was there. A band of bright fluorescent light showed under the door to my mother’s room, and I started toward it, and someone stopped me and told me rapidly what had happened. A massive heart attack, nothing anyone could do …. My great aunt held me. After a while they asked me if I wanted to see her, and I said no. I couldn’t have stood it. Many of these memories are blurred now — I don’t recall exactly who stopped me, or who told me. I remember those jagged peaks on the monitor, and I remember the color of that band of light as clearly as if it were shining in the next room now. It was only some years later, in graduate school, when I read The Duchess of Malfithat I found words to match in some degree what I must have felt. Cover her face; mine eyes dazzle; she died young. 

The ensuing years involved the usual inept evasions of guilt and sorrow. An event like that, especially when you are 17, does not enforce lessons, even if it should. Now I am 50. Ten days ago, I woke up in Cairo with a straining pain in my left leg: the kind of pain that suggests a bad soprano trapped inside there, trying to sing something from ToscaI knew what it was, but for 24 hours I persisted in hoping I had simply pulled a muscle. The next day I took a taxi downtown, and discovered I couldn’t walk at all. A familiar cafe near Bab el-Luk had just opened after Friday prayers, and the waiter propped me there and I started calling friends for help. The pain now indicated that the soprano and the orchestra were working from different scores in different keys. After a while my friends Tarek and Fady arrived with a car, and took me to a hospital in Giza. My leg had swollen to the size of one of those limbs of cattle that hang in butcher’s shops here, and was as red, but with a necrotic blue noli me tangere tinge of rot. As I lay in the emergency room, a doctor told me I had a “massive” deep vein thrombosisWhy massive? Why do they always call them massive? I asked myself. The caterwauling in my leg and in my head had reached a point where the orchestra was trying its hand at a Mahler symphony while the soprano, drunk and flu-ridden, was howling out Pierrot Lunaire.

What it felt like, generally: Caricature of Gustav Mahler conducting, 1900

What it felt like: Caricature of Gustav Mahler conducting, 1900

I spent five days in the hospital, laid flat and depressively eating flavorless soups, while the musicians gradually sobered up and wound down. I am home now, but the clot is still there, diminished but undefeated. I can’t walk much: even staggering to the corner pharmacy to pick up medicines makes the leg swell up again. I inject myself with something in the stomach daily, intrigued by how this doesn’t hurt. Kind friends are staying with me, to cook and run errands and clean. There’s no travel, no boarding an airplane till this is over, and I’m not sure when it will be over.

This isn’t the first time for me. Modernity has done wonders, for those of us in rich countries, to expand the life-span; specimens of homo sapiens in the European Middle Ages were lucky to grasp the goalpost of 35. But the payback is the onslaught of technologically demanding ills that start in the forties, as a reminder that what lies ahead of you is a stretch of undeserved and unnatural existence endowed by civilization’s artifices, that you owe this borrowed time to the bank.

Warfarin way back when

Warfarin way back when

My mother was diagnosed with high blood pressure in her forties. Almost four years ago, I had my first thrombosis. That one started in my leg too, but showed no traces there; it climbed — they’re natural mountaineers — unnoticed to my chest and nested there as if in a Himalayan cave, and I still felt nothing till one night, running to catch a bus on a New York street, things went white and I collapsed. There were massive blood clots (there you go again) in both lungsMy heart almost failed.

After that came two years of staying on blood thinners. The most popular one, Warfarin, was invented by the Wisconsin Agricultural Research Foundation (WARF) decades ago, in search of a humane way to kill rats by bleeding them to death internally. I went to sleek offices to have blood drawn all the time — little pipettes and big bleeping machines became my neighbors, like the vampires civilisés of True Blood — to test my “international normalized ratios,” (INRs) which determine the “extrinsic pathway of coagulation.” You get used to the jargon. Then 18 months ago my doctors took me off the drugs experimentally, since I seemed to be doing reasonably well. Bad call. 

Warfarin now

Warfarin now

In a condition like my current one, you lie in bed all day and think. The first fact about not being well — it should be obvious, but isn’t to the young and healthy — is how boring it is. The second, related, is that your horizon shrinks: all reality concentrates in the point or body part where you hurt or fear, and neither action nor emotion can happen without reference to the fundamental given of what’s wrong with you. How’s my clot today? That question obliterates the sunrise and the revolving world.  Auden wrote a poem about the sick:

They are and suffer; that is all they do:
A bandage hides the place where each is living,
His knowledge of the world restricted to
The treatment metal instruments are giving.

They lie apart like epochs from each other
(Truth in their sense is how much they can bear;
It is not talk like ours but groans they smother),
From us remote as plants: we stand elsewhere.

This is why visiting the hospital-bound or the very old is so horribly dull for everybody else, to be avoided like (literally) the plague, or turned into a quick drop-off of chocolates or floral arrangements, surgical as a Special Forces raid. What have they got to talk about? Their skin is the absolute limit of their interests. I don’t know how my friends, who have been generous with their time, can stand it.

Brooklyn Navy Yard hospital ward, ca. 1900

Brooklyn Navy Yard hospital ward, ca. 1900

At the same time, in high Western modernity, we’re obsessed with disease. With the idea of disease. This is understandable, since we are, as I say, living on borrowed time. Stolen, really: every year we eke out beyond our fourth decade is not just the gift of our technological civilization, but a robbery from other people whom we deny the diet, the drugs, the requisite machines.

Life expectancy in the rich US is 78.62 years these days. (Almost thirty years to go, Scott –voice shrinking to a whisper — insh’allah.)  That’s lower than Monaco, which has hit an amazing 89.63 (insert joke about a good gamble, please) but well above Egypt, where I am now. A cheap, efficient medical system, the legacy of Arab socialism, can’t overcome radical poverty to raise the allotted time above 73.19. In Sudan, just south, the expectancy falls to 63 years; from there on, as you follow the paths of slave caravans and colonial explorers across the continent, it keeps plummeting, to 54 years in Uganda, 53.86 in Zimbabwe, 52.78 in Malawi. Finally, in South Africa, it reaches 49.48 years, one of the worst in the world (in 2013 only Chad was lower), the aftereffect of forty years of apartheid and twenty more of equality deferred. Democracy does not heal; it does not cure history. These figures don’t just map out disease or poverty. They are a geography of power, because who has power has life. (It’s no coincidence that I’m getting the numbers from the CIA.) As a bedridden American in Cairo, on the broad Northern shelf of Africa, I’m sitting atop an inverted pyramid of injustice.

Life expectancy by country plotted against average annual income, 2010: From www.gapminder.org

Do click on this chart. Life expectancy by country plotted against average annual income, 2010: From http://www.gapminder.org

There’s always some symbolic sickness in the West, a disease representing how we think about these powers and inequities: a condition that stands in for what we know about our place in the world, or what we’d rather forget. Cancer used to be the great symbol. Its origins were obligingly inexact; either there were Enemies Within (anonymous little Communists in the liver or the lungs) or Enemies Without, chemical or biological opponents like Third-World dictators making the whole known environment unstable. (Todd Haynes’ Safeabout a woman rendered sick by almost everything in the plastic life around her, is still one of the scariest American films.) Thirty years ago, HIV/AIDS displaced cancer as an imaginative malady. We figured out what caused it fast enough — that retrovirus — but it was easily attributable less to a microscopic invader than to lifesize Others whom we disliked. There were a lot of them. Haitians, homosexuals, and heroin users for US paranoiacs were quickly joined by fearsome cousins around the world: Bulgarian nurses, Zimbabwean migrants, sex workers, black men on the down low, black women who slept with them, Africans in general, foreign tourists, foreign truck drivers, that ethnic minority who stink, the whole sick crew. It’s a truism that HIV prevalence provides a chart of inequality. But HIV mythology provides something almost as valuable: a chart of hate. The political power and the ideological convenience of HIV have always lain in its double gesture: simultaneously exposing injustice, and giving hate a justification.

I’ve watched relatives die of cancer, and friends live and die with HIV/AIDS. The kind of thing I’ve got is different: not worse, certainly, just different. There’s a reason heart disease and its associated syndromes have never become such symbols, such subjects of imaginings. They’re just there. Their ultimate cause is generally in the genes or in some combination of accidents; that multiplication of factors doesn’t lend itself to mythology. In my case, the blood just clots the wrong way, much like my mother’s did. I will have to take modified rat poison for the rest of my life to thin it. This is not intolerable. (The rats are happy.) The problem is, of course, that as a condition it’s controllable but not excisable; it doesn’t go away, and there is always that low basso ostinato uncertainty about whether or when you’ll wake up with a strange pain in the leg that gets more insistent, or keel over in the street. It’s impossible to interpret something like that in any meaningful or order-instilling way. It’s an existential insecurity insusceptible to the consolations of metaphor. It teaches nothing except that the body is frail, unreliable. In no sense can that be made reassuring, not in the way that it’s always comforting to identify some chemicals to eschew, some culprits to loathe, some immigrants to expel.

Jean Bourdichon, The Four Conditions of Society : Poverty, ca. 1500

Jean Bourdichon, “The Four Conditions of Society: Poverty,” ca. 1500

Nobody likes these uncertainties, from which there’s nothing to be gained or learned. Nobody likes knowing the body is weak and prone to betrayal.  All that money, all our accumulations of political power, all those drugs we hoard behind patent laws, all the debt we extract from others to fund our happiness, all the food we store up while others starve, all our drones and armies and the authority our societies claim, can’t contend against our physical random flaws, doesn’t alter the aleatic vulnerability of the individual body. It’s an old cliché:

Gold cannot buy you health;
Physic himself must fade. …
Brightness falls from the air;
Queens have died young and fair.

But do we ever hate hearing that.

The rich die well, but they still die: Paul Delaroche, Cardinal Mazarin's Last Sickness, 1830

The rich die well, but they still die: Paul Delaroche, “Cardinal Mazarin’s Last Sickness,” 1830

You would think that Western gays, after years of confronting HIV, would have come to terms with the body’s unreliability. But no. In fact gays particularly hate the idea. Maybe it’s because their identities are so tied to a set of physical acts that to admit bodily weakness would undermine their selfhood in a particularly drastic way. Maybe it’s because one common reaction to AIDS has been an extreme compulsion to look and act healthy. Back when I came out, in the 80s, you were required to be buff and butch and the picture of wellness (odd that the Marlboro Man, a pitchman for killer cigarettes, served as icon of this vital manhood). The slightest sag into infirmity or unaccountable cough, and no one would touch you for fear of infection. We queers measure triumph or disaster by our bodies. We can’t afford to let them be mistrusted.

I learned this in a curious way, the last time I got seriously sick; I learned it from a bunch of people who don’t like me. When I resigned from Human Rights Watch, I discussed the blood clots in my lungs that triggered my departure, in a letter that made its way around the Internet. What struck me about the many responses was that people who disliked me for political reasons felt compelled to turn that into medical mistrust; they simply didn’t believe I could get sick. This took nasty forms. The ever-love-filled and litigious Peter Tatchell repeatedly circulated e-mails to thousands, saying that “Scott Long left Human Rights Watch. He claims it was because of ill-health. Others suspect he was sacked.” Peter’s friend Michael Petrelis, the crank-slash-stalker in San Francisco, developed this theme, blogging that “Long developed a severe case of a Soviet-style case of the flu … His official explanation for moving on would have delighted the editors of Pravda in Brezhnev’s day, it was so full of obfuscation and self-pity.” Melanie Nathan, a peculiar West Coast blogger, just three months ago sent me an series of messages saying — among many other things — that “We all know that your ’embolism’ was a convenient excuse” (not clear for what). She also called me a “vile bucket of anal slime,” which I think is a quote from some website. There were more. I would have to be superhuman not to be angry at these creeps; I felt like sending them my medical charts as proof, or maybe my medical bills. Some of these folks were crazy, some permanently enraged, and some simply hadn’t a clue what they were saying. But — trying to stand back slightly — I hear in all this vituperation a very human fear. Your foes are always supposed to be there, even more so than your friends; they’re an identity and linchpin, a pole against which you define yourself. They’re spectres and ideas, not frail and physical people. God forbid they should have bodies; God forbid their bodies should do them wrong. I’m sorry I got sick, and I’m sorry that unsettled Tatchell and Petrelis so much. Perhaps I can understand, though, why the news of somebody else’s sickness roused them to so much anger. “Rage against the dying of the light” translates quickly into a rage against those who remind us of the dying.

So here I sit in Cairo, thinking about my body.

Edvard Munch, "The Sick Child," 1885-86

Edvard Munch, “The Sick Child,” 1885-86

My mother died when she was a year older than I am now: much too young. I can’t remember her without seeing, almost like a light beneath her skin, the banked fires of things undone. The memories don’t grow easier. I cannot read Paul Celan‘s poems about his lost mother without breaking into uncontrollable tears:

Rain cloud, above the well do you hover?
My quiet mother weeps for everyone.

Oaken door, who lifted you off your hinges?
My gentle mother cannot return.

Celan’s mother died in the Holocaust, in Transnistria. It’s presumptuous to compare personal loss to historical catastrophe. But loss is what it is, always different in its circumstances and in other ways always the same. My mother died because her body failed her. It was part of a world in which she’d suffered, and also where she had a relative degree of safety: a world where she had tried to compensate for both by a constant, wearing labor of compassion. It didn’t matter. My mother died because her body was part of the world, and the world is perishing.

It’s strange that I’ve spent so much of the years since then working on things like “sexual rights” and “bodily autonomy.” Bodily autonomy is a beautiful ideal. Like so much in human rights, it gestures toward a vision of a perfect cosmos, lit by Platonic concepts that burn in the corridors like inexhaustible candles. Yet our bodies are not autonomous. Our bodies are part of the world. They are subject to its vicissitudes, implicated in its weakness, its injustices, its power, its deaths. They live with the world’s joys and fail with its wrongs. This is a fact, not a lesson. It can be said; it can’t be learned. I will only learn it by dying.