Ezekiel Hopkins’s “a great bubble blown up by the breath of God” and all those paintings of children blowing bubbles return to the original meaning, for each breath is fleeting but breathing is life itself. There’s a story about a Zen student who complains that paying attention to his breath and counting his breaths, the fundamental exercise of Zen meditation, is boring. His teacher plunges his head into a stream and holds it down a long moment, then pulls him up and says, “Still boring?” Less boring when its transience is more evident.
Years ago I visited a friend who lived on a houseboat and while admiring the lemon trees and prickly pears flourishing ferociously in half-barrel planters on his deck was told that the deck was forever rotting away from the dampness and had to be replaced at least once a decade. As we walked down the long plank boardwalk back to shore, we talked about whether humidity and aridity themselves could have been forces that shaped religious belief. There are in many damp places a belief in reincarnation, the eternal renewing of life and the world, which of course also means eternal dying. In the warm, damp regions everything disintegrates, regenerates, must be rebuilt, manuscripts must be copied over as the pages decay, and the air is full of spores and bacterias and insects eager to consume and transmute.
In the dry world you can at least fantasize about unchanging permanence and eternity, and bodies can be mummified, preserved by drying—like fruit, fish, books in libraries, the Dead Sea scrolls, and paintings in climate-controlled museums. In the cold world things may also last for ages, like those frozen bodies of mammoths and mountaineers. The photographer Irving Penn made a witty modern still life out of blocks of frozen food—raspberries, blueberries, asparagus, carrots, beans, pale under a haze of frost—standing on end, an architecture that must have already been thawing and on its way to collapse under the studio lights.
I preserved the apricots that August, and my friend who had helped me with the first round of canning badgered me to have my first mammogram a few months later, only about six weeks after the terrible turbulence of September and the invitation to Iceland. In those days every woman over forty was supposed to have one annually; I was years behind that schedule, though a few years later the guidelines would shift and suggest that some of us could wait until fifty, but by then it was too late for me. I went dutifully but dismissively to be irradiated by those machines whose vises clasp your breasts like a lobster clamping onto a clock. Everything in my family history and my own habits exonerated me from danger, and I expected this business of making images of me from the inside would do the same. It didn’t.
I didn’t see the first round of pictures from the standard exam, but they were apparently interesting enough that my nurse-practitioner, who had also urged me to get examined and saw the results, moved up my biopsy date. And so it was that I found myself one afternoon two weeks later lying facedown on a table, cautioned not to move for the next hour, with a major section of myself anesthetized, and the whirring sound of a tiny drill entering my flesh again and again through the hole in the table. From where I lay, in a position that became excruciating because I had to hold it so long, I could twist my neck and see a screen where images of that breast in black and white showed huge on a monitor.
What size is a representation? No size at all, for we get used to seeing satellite photographs of continents the same size as snapshots of babies. These images looked like a night sky, hemispheres of darkness with pale streaky strands like clouds or vapor or the Milky Way in a desert night when the stars are so numerous they blur into radiant fields. Some of the bright areas, the microcalcifications or tiny calcium deposits that looked pale in that dark sky, were the grounds for concern.
On the screen that day was an image that didn’t look at all like me. It was me, and my fate, this mortal heaven they were exploring with instruments, guided by live X-ray images, working remotely, as though they were embarked upon a moon probe or an ocean-floor exploration. Pearls, bubbles, skulls, bowls of fruit, but in my case it was interior images; a portion of my body that had always been there had been numbed into nonexistence, and a version of my body that had never existed before, that strange night sky on the screen, had supplanted it. I was not here but there, in this new vanitas picture.
The procedure on the table was a stereotactic core biopsy, and the device I was lying upon made the digital images I saw on the screen, and the images guided the cluster of people hovering around me about where to drill next for the thin core samples of flesh that would be examined later under a microscope. A pathologist would look at my cells to see if some of the cells in the lining of the milk ducts had begun to stray from their intended pattern. That is, if I had cancer.
Or rather had anomalous cells that might or might not become cancer, might have “ductal carcinomas in situ,” as they’re called. Some go on to become invasive cancers; some don’t; and no one yet can predict which are which. Twenty years ago these cells were too subtle to be detected by X-rays; in another ten or twenty, medical technology will likely be able to determine which go on to be invasive. At that point in time, their presence could be detected but not their prospects, so they were all regarded as perilous. My portrait was being painted by digital X-ray machines from the inside out and by microscope slides from the cellular level up; it was a portrait of mortality. Of course I had always been mortal, but not quite so emphatically so.
I was being pared like an apricot with a bad spot, or rather a bad spot was being sought in the outer space under my skin. And this was only the beginning. The voyage I was to go on was a tour of a country where many go much farther and some don’t return. I had thought Iceland was my next major journey, but this other country was on the route beforehand. In this country, you are yourself the terrain, and you are traveling toward or away from your mortality. You do not know yourself, but must rely on expert guides and interpreters. More than that, you are not yourself.
You must be patient, must become a patient, must take up residence in waiting rooms, must learn to wait for experts and results, must grow accustomed to being laid out upon tables and invaded, described in unfamiliar language, and treated with methods that may seem like illnesses and injuries though they are intended to cure. Your life is a ship others steer; it contains mysteries you do not understand; those mysteries include that eventuality when you are no longer yourself at all, whether these sailors save you from it for the time being or just hold you at the top of the waterfall for a while.
The real story of your life is always all the way from birth to death, and the medical experts appear like oracles to interpret and guide even as they turn you from your familiar self, a dealer in stories, into mute meat, breathing or approaching last breaths. They often look away from you to make and interpret the maps of the world beneath your skin by which they navigate. Portraits and descriptions of you amass in folders you might be allowed to see, or not. You may need interpreters even to understand the scrawled notes and test results. You are your biological self, a vast and enigmatic landscape of interiors, flows, chemistry, cells, systems, and samples. You exist as a few cells under a microscope and on a chart of statistics for your categories.
All of the images they make of you are vanitas images, reminders of your frailty and the fleetingness of all things, particularly your own flesh, a bubble sustained by breath. The singer of Federico García Lorca’s “Somnambule Ballad,” blood like roses blooming on his shirt, asks for refuge, but his friend, who suffers from a more enigmatic condition, replies, “Pero yo ya no soy yo, ni mi casa es ya mi casa.” But I am no longer I, nor is my house still my house. House, country, landscape, kingdom of the body, now strange and foreign.
6 • Wound
A couple of years earlier, I was the one who offered to take home the very old woman, a friend of my friend, but the boyfriend who deserted during my crises, or fell apart during his, was the one who actually drove her across town. She was worn out from the political conference, but still lively e
nough to tell us about her adventures in Cuba forty years earlier, where she had met Che Guevara. That a figure so legendary had crossed paths with the tired woman with the creased cheeks and dyed black hair in the front passenger seat was a little astonishing, as it always is when what seems like the remote and mythic past turns out to be within reach of someone present. They started talking about the Che movie.
That feature film, The Motorcycle Diaries, after Ernesto “Che” Guevara’s journal of the same name, makes the medical student and his young doctor friend Alberto Granado seem like dharma bums, drifting around the Latin American continent for general adventure, but their purpose was a little more pointed. In 1950 Granado was already working in a leprosy hospital in Córdoba, Argentina, and his friend had joined him there for several days, then set out on a solo adventure on motorcycle. Though he returned to medical school, his appetite for wandering was whetted, and Guevara and Granado set out on their grand motorcycle expedition two years later.
They traveled across the Andes, up the west coast and into the Amazon from leprosarium to leprosarium, and even in between presented themselves to hospitals and townspeople as experts in the disease. Afterward Granado returned to the field, in a leprosy hospital in Venezuela, and invited Guevara to join him. Guevara even published a couple of scholarly papers on the disease and wrote his parents toward the end of that odyssey, “I’ve become really interested in leprology, but I don’t know how long it will last. . . .”
That long road trip on the motorcycle that kept breaking down and was eventually abandoned is how and when Guevara woke up to a particular kind of pain himself and then to his sense of purpose on earth. He encountered the destitute, the dispossessed, the dying, and the outcast—an unemployed miner and his wife shivering without blankets in the Chilean desert, an old woman dying of asthma and poverty, indigenous girls and women groped by soldiers, the pariahs of the leper colonies in the Amazon jungle. He was not quite twenty-five, a handsome, spoiled firstborn son of an upper-class Argentinean family who approached almost everything with an air of scorn and feigned indifference, who took pleasure in offending hosts and violating conventions.
One of his biographers, Jon Lee Anderson, speculates that he had chosen to become a doctor because he watched his grandmother die in agony, but he delayed his exams and took his studies casually. He had known pain long before, and illness, and the nearness of death, lived all his life in and out of that country of the sick. He had since early childhood been prone to brutal asthma attacks. At any moment his bronchial passages might seize up, breathing might become almost impossible, and his whole body racked with pain. Death was always a possibility.
This may have contributed to his savage debonairness, his air of a hero who dared much and feared little. Even on the trip with Granado he often had dangerous attacks that his friend would rescue him from with a big shot of adrenaline. And even with this drastic treatment he would often be unable to function for several hours or a day or more. His health was a bomb that often went off. Maybe asthma was the deus ex machina at the Cuban Revolution.
Doctors help people; they diagnose them; sometimes they alleviate their pain; sometimes they cure them. But they do it one by one, and the causes they address seldom include social or economic conditions. The young Guevara diagnosed the continent and the world as suffering from a disease produced by injustice and prescribed revolution for it, a cure as violent as any surgery. But the diagnosis took a long time and planning his future did too. Step by step he veered from thinking he would continue with medicine.
He did receive his medical degree not long after the motorcycle odyssey but immediately embarked upon further travels across the continent. He then imagined what a revolutionary doctor would be and dreamed of a medicine that would create “a robust body through the work of the whole collectivity, especially the social collectivity.” He and Granado had met a communist doctor who was a leprosy specialist, Hugo Pesce, in Lima, Peru, and Pesce became an important influence on Guevara, both by the example of his commitments and his compassion, and by dispatching the young medics to a leprosy colony in the rain forest of the uppermost Amazon River.
On that adventure, his environment changed; it let in things that he had not encountered or had encountered but not assessed or felt before. “I began to come into close contact with poverty, with hunger, with disease, with the inability to cure a child because of a lack of resources, with the numbness that hunger and continued punishment cause. . . . And I began to see that there was something that, at that time, seemed to me almost as important as being a famous researcher or making some substantial contribution to medical science, and this was helping those people.”
Out of empathy for the sufferers he met on his odyssey, the young man evolved into one of the great revolutionary icons of the twentieth century. He became the public figure the old woman we drove home met when she was young herself. But it was my then-boyfriend on that drive across town who astonished me more by telling us in the course of the conversation about The Motorcycle Diaries that it was not the disease of leprosy itself that caused so much damage to hands and feet. The disease strangles nerves, kills off feeling, and what you cannot feel you cannot take care of: not the disease but the patient does the damage. You begin nicking, burning, bruising, abrading, and otherwise wearing out your fingers, toes, feet, hands, and then losing them.
Pain serves a purpose. Without it you are in danger. What you cannot feel you cannot take care of. It seemed shockingly accurate at the time, a new and brutal version of an old truth, so I read up on leprosy and on pain. A young woman named Yolanda in one of the first leprosy colonies Guevara visited liked to protest that she should not be there because there was nothing wrong with her. Since she was beautiful and without obvious signs of illness, people tended to take up her cause. Guevara began to argue with Granado, her physician, until the latter showed that a hypodermic stuck into one of the numbed patches on her back elicited no reaction. The younger man was furious and accused his friend of using her to show off and then gradually accepted that she was ill despite her attractions. She didn’t feel the needle, but he did.
Leprosy is a bacterial infection to which most of us are immune and the small percentage who aren’t have a hard time catching—it is among the most incommunicable of communicable diseases, and when you catch it, many years may pass before symptoms appear, making the method of contagion a little mysterious even now. Those who contract it sometimes have only minor symptoms on their skin; or they have disfiguring skin rashes, eruptions, and growths, and those areas grow numb; or they sustain more extensive nerve damage. The leprosy bacillus is particularly at home in the cooler parts of the body, the skin, the hands, the forearms, the feet and lower legs, and the nose and eyes. In almost any of these places, infected nerves can swell up and then strangle in their sheath and die.
The nerveless part of the body remains alive, but pain and sensation define the self; what you cannot feel is not you; what you cannot feel you do not readily take care of; your extremities become lost to you. Pain protects; you get something in your eyes, and you do something about it, but delicately, gingerly, or it hurts. You flinch, you blink, tears flow. With leprosy, you might stop blinking, so your eyes go dry, or you rub them too hard and scar the cornea, or fail to notice some injury at all. Thus blindness is a common consequence of the disease.
For centuries the infection ravaged people around the world, from India to Iceland. It was a Norwegian doctor with a microscope who identified it in 1873 as being caused by a bacteria—it was in fact the first such disease identified this way. Hansen’s disease, after this pioneer doctor, is the more polite term for the disorder, but almost no one knows what Hansen’s disease is. People don’t really know what leprosy is either, when it comes to the details.
Before Hansen, the disease was thought to be hereditary, or easily transmitted, or transmitted sexually, or acquired as a punishment for sins and sexual corru
ption, or to be a spiritual disorder that marked the sufferers out as chosen in some harsh way for redemption through suffering. During the Second World War, the disease became curable with an extended course of sulfone drugs, and millions have since been cured by that and then more-sophisticated and less-toxic drug regimes. Not everyone who contracts the disease receives the treatment, and there are still leper colonies and outcasts around the world.
Those with leprosy in most times and places were cast out, isolated, quarantined in the United States well into the 1960s and beyond, or even driven out to die while people with much more contagious diseases, from syphilis to tuberculosis, were not subjected to any such treatment. Native Hawaiians, who were in the nineteenth century hunted down and forced into the remote leper colony beneath the great cliff at Molokai if they had the disease, called it “the separating sickness.”
The stigma was so great that families lied that the afflicted member had died. Leprosy was grounds for divorce. In the United States in the twentieth century, people were encouraged to change their names when they went into quarantine, as though their old, free self had died. To receive the diagnosis of leprosy was to be cast out of society, and most never came back. Leprosy was really two diseases, a bacterial infection and a social stigma, and the latter, the separation sickness, was often the most painful and debilitating. They suffered like Frankenstein’s creature the terrible exile of the abhorred.
It was another doctor with a strong sense of purpose, Paul Brand, who confirmed and taught that the disease itself didn’t cause much of the damage by which it’s known. He was a missionary doctor in India who began working with leprosy patients as a skilled surgeon, helping to uncurl contracted fingers and otherwise tending to the wounds and disfigurements of the disease. When the disease became curable, Brand wondered why even the cured patients continued to lose joints or whole digits of hands and feet and to acquire more injuries and infections.
The Faraway Nearby Page 8
