Authors: Shelby Smoak
Bleeder
BLEEDER
A Memoir
Shelby Smoak
Michigan State University Press
East Lansing
Copyright © 2013 by Shelby Smoak
The paper used in this publication meets the minimum requirements of ANSI/NISO Z39.48-1992 (R 1997) (Permanence of Paper).
Michigan State University Press
East Lansing, Michigan 48823-5245
Printed and bound in the United States of America.
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LIBRARY OF CONGRESS CATALOGING-IN-PUBLICATION DATA
Smoak, Shelby.
Bleeder : a memoir / Shelby Smoak.
p. cm.
ISBN 978-1-60917-355-5 (ebook)—ISBN 978-1-61186-069-6 (pbk. : alk. paper) 1. Smoak, Shelby. 2. Hemophiliacs—Virginia—Biography. I. Title.
RC642.S66 2013
616.1'5720092—dc23
[B]2012029287
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To my fellow hemophiliacs and HIV sufferers
At the end of my suffering
there was a door.
—
LOUISE GLÜCK
CONTENTS
The Handbook to Dating with HIV
The Depressing Effect of Numbers
BLOOD
I
AM
C
AUCASIAN, FIVE FOOT ELEVEN, HAVE SANDY BROWN HAIR, BLUE
eyes, and am a tender slip of bone. And I am at the hospital.
I am here because I have hemophilia; because my blood fails to clot normally; because I was a boy who received a defective X chromosome from his mother. Of course, it is not her fault, for until I was born, she didn’t know she carried the defect. In fact, I am the only proof of it.
In 1974 when I was two, an unusually large bruise developed across my back and refused to heal. My parents were confused. How can this be? This bruise isn’t normal? What is wrong with our son? Necessarily, their concern carried them (and me) to the emergency room—a site that will become commonplace to me as I age. Three days later, a test returned positive for hemophilia and my problem was solved. I was treated with a plasma product; the bruise healed; but I went home a hemophiliac, a free-bleeder. And my life changed forever.
Today, I am here for my six-month check up. Dr. Trum flips through my chart and jots notations as I wait. He is middle-aged, smart, and understands hemophilia from a very technical and scientific point of view. His face is broad and long, his nose large and bulbous and reddened along the snout, and he wears Buddy Holly glasses with black, pointed rims. They are his most noticeable characteristic and front a pale face and its white hair
while the eyes behind the thick glass crease at the corners and underneath and are, as I imagine it, a result of long hours of medical study and, more recently, the worry and concern HIV has brought him. He clutches his clipboard, rustles my papers, makes another mark before he addresses me.
“You’re eighteen now.” My birthday passed five days ago. Then, Mom baked the cake; Dad and my sisters—Louise and Anne—sang the song. “So, I have to tell you the results of your HIV test,” the doctor says.
I understand that the hemophiliacs were drastically affected by the tainted blood supply in the 1980s, and I think I intuited then how it would one day involve me, but I wasn’t ready then for this kind of confrontation. I was just a child really. I recall sitting with Mom and Dad after the dinner meal one evening. I was attending high school, was perhaps a freshman or sophomore, and I suppose, too, that Anne and Louise had eaten and left the table, for I don’t remember them being a part of this discussion. Dad folded his napkin underneath his plate and looked to Mom, who began the question.
“Son,” she said, “have you been reading the papers and magazines and following the news about this HIV and AIDS?”
I nodded that I had.
“Then you know that the hemophiliacs are one of the risk groups.”
Again, I answered yes.
“Then I wonder if you want to know about yourself. You were tested last year and your father and I know those results.”
“You’re in high school now,” Dad interrupted. “It might be time you knew.”
“But he’s still just a kid, Shelby,” Mom retorted to Dad. I looked at them as they looked at each other. Mom blew her nose in her napkin, wiped her face. Dad reached out his hand to cover Mom’s trembling one. And then I shut out my fear.
“I don’t want to know,” I asserted.
Now, childhood can no longer shelter me.
“If you have to tell me, then tell me. What choice have I?”
“In 1985,” Dr. Trum says, placing a hesitant finger to his glasses, “your test came back positive.”
I am numb. I do not move.
My stomach twists, tightens. My body churns, knots, convulses. And my poached heart weeps its funerary rhythm.
My parents have kept this from me as I’d requested. And I realize now how their already hard-worn hearts must have torn with sadness all these years as I grew up. They protected me by their silence, like Trappists, saying prayers but not speaking. But today it changes. My innocence is shed from me. I am an adult. I am educated to grief and pain and hurt and death.
My life leaks out of me. Dr. Trum’s voice becomes like a muffled drum. It throbs in my ears, but is lost as the hollow echo of the vacuum into which I have slunk. The doctor lays me out. He rustles his icy stethoscope against my expiring breath, and he rummages his cold hands along my frail bones. He tests the flex of my knee, the turn of my ankles, the sound of my breath, the beat of my plundered heart.
“How long have I had this?”
“Well,” he says, returning to his desk and needling my file of papers. “Most of the infections occurred prior to 1984 before blood screening began.” It is now 1990, I think as Dr. Trum pauses, resumes. “We can’t say for sure at this point, but it’s likely you were infected in the early eighties,” pauses again, “if not before.” It is all matter-of-fact for him and I hate that about him. Hate him. Hate his hospital clinic.
When I can think of anything amid this horror, it is of my grandmother. She is all I know of death. When we visited, she would sneak me cups of sweet coffee, and we would sip our brew in her parlor as the sun stole darkness from the morning. We would both smile at something secret and special we shared. And when she died, that notion was replaced by something blank as I tried, at eleven, to understand what it meant to pass away.
“How long do I have?” I ask. Yet I don’t want an answer. I don’t want my life bridled by a number.
Dr. Trum rambles, recounts statistics, offers hope, but shies from my question. I am no longer here. I am in a castle, in my thoughts. When I was a child dealing with my hemophilia, I relied upon this fantasy world, and my castles protected me then; its sorcery was my salvation. It was easy to imagine other worlds with kings and queens who ruled happily, knights
and paladins that jousted gold-hungry dragons, and powerful mages whose shriveled hands healed and destroyed with intangible thought. And I try to conjure the magic of that place. This, however, is harder to defeat with fantasy. HIV is not a battle wound Merlin would understand.
