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 0 0     0 0   by Tom Andrews
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Here are a few lines from the two letters which I keep, well-creased, in my wallet. In case of medical emergency, they will narrate for any doctor the terse autobiography of my blood:

	Factor VIII assay.......3%
	Factor VIII inhibitor...none present
	White blood cells.......7400
	Red blood cells.........5.30
	Hemoglobin..............16.6
	Hematocrit..............47.1
	Platelets...............296,000
	SGOT....................30
	SGPT....................22
	LDH.....................178

Life-threatening bleeding should not be treated with desmopressin acetate, but with the purest factor concentrate available.

I am a "classical" hemophiliac: someone who lacks Factor VIII, the element in the blood that clots it, that stops the flow when a vein has been cut. For me, as for all hemophiliacs, even the most trivial event--walking by a table's edge, clapping my hands, stepping onto a leaf-obscured or icy curb--is riddled with the chance of an internal bleed. I once lifted a gallon of milk in such a way as to break a blood vessel in my elbow. The joint's interior filled with blood until my elbow looked like a steroid-enhanced eggplant. Sometimes, when I'm walking on a rainy sidewalk--trying to avoid a slip or a collision--I feel like a huge bruise waiting to happen.
Growing up, though, I thought I was healthy, even normal. Our family doctor hadn't yet figured out why I bled so much whenever I got hurt. My older brother, John, had been born with kidney disease. His growth was stunted at four foot eleven; dizzy with medication, he was utterly uncoordinated, and he moved through the world at a snail's pace.The dialysis machine which sat in our living room was used every other day after he'd turned sixteen. My bleeds were mysterious, scarily long--but bleeds didn't occur every day, or every other day like John's dialysis. I was the healthy child in our family. I prowled the streets with neighborhood kids, threw eggs at cars, got into trouble.
John's disease and my own were randomly symmetrical. Scientifically speaking, they were absolutely unrelated. And yet there were days when John's shunt became clotted with thickened blood, so that it threatened to stop his heart. Meanwhile, I'd get tackled in football, and my thinned-out blood would start an uncontrollable flow. Literally, what was life to John was death to me. It's as though we had undergone a strange, contradictory wash in the gene pool. No doubt it was utterly bewildering to my mother and father, who without the least preparation had brought into the world two children whose chromosomal accidents seemed to mirror a mythology they would act out in life: inverse siblings, the good and the bad brother.

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When I was thirteen, I held a knife to my brother's throat. John and I were standing downstairs, near the kitchen, in our split-level in the suburbs of Charleston, West Virginia. It must have been 1973. John was in high school then; I was just starting junior high.
I'd been looking around our neighborhood. The boys next door--the Rafferty Brothers--shot BB guns at each other. They threw lit matches and firecrackers, too. Mike Scheller had pushed his brother Max off their backyard tree house, breaking Max's arm. Bob Lilley tried to outline his sister Claire's torso with darts against the Raffertys' garage door. A dart nicked her thigh. I was scared to death of the violence of these "pranks." Such pranks were ubiquitous, though, among the kids in our neighborhood. Nothing comparable ever happened between John and me. Were we abnormal? Worse, were we sissies? Clearly, something was missing. Danger. How to infuse it?
John had just come out of the bathroom, squinting at the light from a ceiling fixture hanging above the bathroom door. Light dazzled and appalled John. Disease had made his eyes apractic and unreliable; they had never got used to light's glare and shimmer. He would sit for hours in darkness on the edge of his bed, utterly at ease.
No doubt, I had seen a move like this on TV--on "The Mod Squad," say, or "The Streets of San Francisco." My plan was to scare him and wait for his retaliation. I'd scare him, he'd scare me, our lives would be richer. Of course, I knew that as a dialysis patient, he was pathetically vulnerable. He couldn't have moved fast enough to duck a serious blow. I had never taken advantage of this. My role, I'd decided long before, was to protect him, to be--if not his keeper--at least his callow bodyguard. But on this day, I decided that we needed to spice up our moldering lives with a little danger, fear, and artifice. We could never compete with the Raffertys, but we could pretend for a while that we had Rafferty-like vacuity.
I held John's old pocket knife in my hand, its blunt blade tucked away.
"Ever been held up?" I said, opening the knife. I tried to sound tough. The blade was short and scarred.
"Nope," John said. He looked distractedly at the knife in my hand. He was supremely uninterested.
"What would happen if I held you up--like this?" I held the knife to his throat. It felt awkward, and silly. John and I hadn't so much as wrestled in years.
John didn't seem surprised. He said simply, matter-of-factly: "Great. You're pulling a knife on me."
Immediately his body relaxed. It slumped into submission. You're stronger, I won't fight you, his body said. I was confused. After all, I was twelve. John was seventeen. My body, like his, was weak. His abdication of what I saw as his responsibility to fight back, to defy me, his acceptance of my so-called strength, startled and saddened me.
I withdrew the knife.
For the first time, I realized the extent to which John had accepted his disease. To my twelve-year-old mind, acceptance of disease--of extreme vulnerability--was anathema. One had to defy illness with all the energy one could summon. Defiance was crucial to survival. I had thought John shared my views.
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As kids, we had tormented each other constantly--as often as our mutual illnesses allowed. We had plotted intricate revenge on those who wrought humiliation at school. John was never able to go outside to play. Thus, our play consisted of housebound intellectual terrorism. We dissected each other's friends and favorite books and TV shows as if they were floating in a pool of formaldehyde. We listened to Led Zeppelin and a hundred other bands and argued fiercely about their places in the rock music canon. To be stupid was to be invisible, or dead. John was smart--about people, about music. His high school buddies called him Mini-Brute. The name averred that although kidney disease had stunted his growth to four-foot-eleven, he was one of the guys. He was bad.
Then, sometime during his junior year in high school, he became a saint.
His transformation was more gradual than the last sentence suggests, but to me it was like watching a movie in fast-forward. One minute he is listening with manic glee to Jimi Hendrix, the next he is burning his record albums because they are a hindrance to God's plan for us. One minute he is brilliantly savaging Dean Martin's appearance on "The Tonight Show," the next he is saying only good things about people.
I have in my life occasionally flirted with piety. John married it. He became one of those whom Saint Augustine in the Confessions called the servi Dei, the servants of God: pious men and women whose faith remains unshaken by the cruelest circumstances. He decided to become baptised again, this time as an adult, to correspond to the adult evolution of his will. My parents were serious Methodists already, but their faith increased as John's did.
My mother, father and brother became partners in an Amway business--AAA (Andrews, Andrews and Andrews) & Associates, their business card read. Amway made up a kind of subculture within evangelical circles in West Virginia. Fellow Amway dealers often came to our house to pray with John, to touch him, to have him pray for them. He would sit in his dialysis chair, a green La-Z-Boy recliner facing the TV in the "green room," the family room, and receive visitors as though they were supplicants. From upstairs or down the hall I heard the voices. I heard normal conversations that at some point took on a sudden, strange hush as John and his visitors began praying, speaking in tongues, laying hands on one another.
As they left the house, I studied the faces of those Amway dealers. They appeared changed, transformed for a while by hope or courage. One woman stopped me as I rode my bicycle on the driveway, placing her hands firmly, even brutally, on the handlebars.
"You know your brother's a saint," she said. "God put him here to be a witness to His glory. You might want to pay attention before it's too late."
Before it's too late. Too late for John? Did she think John was going to die soon? No. She clearly meant me, before it's too late for me. I might die unsaved and live forever in hellfire. From which fate John could apparently play a mediatory role in delivering me.
Had John's transformation from disease-challenged suburban kid to saint exacted any toll? Did he miss the easy confidence we shared, the endless discussions of pop culture, the genuine affection of his peers? We had had the brotherhood of pain and illness to unite us, a bond I thought as undying as actual brotherhood. The boundaries that illness created--though I fought against them, while John seemed at home nowhere else--were themselves an irreducible connection. Suddenly all that had changed. His canonization took him away from me before his death. Now I realize that his religious fervor increased exactly as his health diminished. He knew he was going to die--not just then, but not long afterwards. He was making preparations.
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While John was studying the Bible and preparing to visit the Shores of Glory, I raced motorcycles, competed in skateboard contests, joined a punk rock band. I even (when I was eleven, before I was officially diagnosed with hemophilia) broke the world record for hand-clapping, which landed me in The Guinness Book of World Records.
Looking back, I realize I was trying to deny at all costs the received image of hemophilia--or of any chronic illness. Hemophiliacs, that image suggested, must lead a silent, sedentary life, must follow doctors' orders with exemplary, even saintly, resignation, must look and act sick. My brother's response to kidney disease was to live out just such an image. Perhaps I was staking a claim to my own experience of illness, apart from my brother's. Perhaps I simply liked the idea of being a bad insurance risk.
"Motorcycle racing?" my friends ask me now. "Competitive skateboarding? How could your parents allow it? What were they thinking?"
The truth is, my brother's illness was worse than mine and demanded more time and care. It's also true that--though I suffered severe bleeds throughout my childhood--I was not diagnosed with hemophilia until I was fifteen. Before then, our family doctor would throw up his hands at my repeated bleeding and mutter something like, "It's the darnedest thing," before aspirating the blood from my flushed knee or ankle with a syringe the size of a small Buick. This is one of the things that I have to be thankful for. If our doctor had been more careful, I might have been diagnosed as a hemophiliac much earlier. Without the diagnosis, however, my parents had no real weapon with which to fight my stubborn determination to risk life and limb.
Once the diagnosis came, it was too late. The habit of risk was set. Motocross, skateboards, domesticated punk: these were constellations by which I navigated my days. I'd read somewhere in Freud that one's life loses interest in direct proportion to its lack of risk. I certainly believed that. When my hemophilia was finally diagnosed, I decided not to let my life be scripted by my doctors, no matter how many bleeds I suffered as a result. I raced motocross clandestinely, without my parents knowing about it, for another year or so. You might say that I was either a "self-actualizing" child or a monster, depending on your point of view.
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John had at least one major operation each year for the last seven years of his life. He underwent, among other procedures, two total hip replacements; a kidney transplant (for which he had been on a waiting list for years); an operation to remove the transplanted kidney (after it failed along with his ruined spleen); and an operation to remove his gallbladder (which happened to follow a horrifying battle with pancreatitis).
In 1979, after the operation to remove his spleen and transplanted kidney, my mother and father were told that an artery had accidentally been clipped during the procedure, with the result that John's system retained fluids. Toxins pooled in his cells, the cells sputtered and drowned in poison. It was the beginning of the end. He died the following spring, when I was eighteen. I stopped riding my motorcycle. Ten years later, I started again.
I am thirty-six now, and I still race my Kawasaki, sometimes, and ride skateboards, still practice layups on the asphalt court down the street. I think of these activities now not so much as ways to defy my luck but as a means to participate in it, listen to it, even--though this will strike many as ludicrous--honor it. When I am in the midst of a bleed, half-afraid of death, the future narrows to a point. The past expands and contracts in waves. Only the present is stable. And the present feels to me like a continent yet to be explored. Then--when the fear is over--I set out, once again, to cross it, determined to spend my days exuberantly, wonderingly, intimately, with irrational desire. The tightrope balance required to take an off-camber corner at speed, weaving my motorcycle through low, tilted sunlight; kicking up into a handstand on a moving skateboard, watching the vivid world flash upside down; the body's uncannily timed stretch to block an opponent's layup--to me, these counterphobic talismans suggest that there are factors of the blood yet to be enumerated.
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From Tom Andrews' Codeine Diary
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