BLEEDER
A Memoir
By Shelby Smoak
Michigan State University Press
Copyright © 2013
Shelby Smoak
All right reserved.
ISBN: 978-1-61186-069-6
Contents
Blood................................................1
A Man in Hiding......................................13
The Regular..........................................21
Ana..................................................31
Sandwich Interlude...................................41
College..............................................45
Throwing Hope Away...................................51
The Split............................................59
Summer 21............................................67
The Pine Cone Did It.................................83
Lungs................................................95
Ears.................................................99
Yachts...............................................109
Sunset upon the Heart................................115
The Handbook to Dating with HIV......................125
My Lolita............................................131
Chase Manhattan Owns Me..............................141
Ankles...............................................147
The Depressing Effect of Numbers.....................151
Loose Lips...........................................155
The Unicorn..........................................167
Winter Is the Cruelest Season........................171
Cocktails............................................183
Recovery.............................................191
The Open Door........................................197
Acknowledgments......................................201
Chapter One
BLOOD
I am Caucasian, 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.
"We want to get you started on AZT," Dr. Trum says.
"You do?"
"Yes. AZT will help stop HIV's spread."
I am handed a slip of prescription paper and ushered back to the lobby
where Mom waits for me. As I near, she closes her magazine and I can read
her sad and knowing look.
"Did they tell you?" she asks, rising slowly. Her whisper-fine strands of
brown hair curl gently at her shoulders while her deep blue eyes sparkle in
the flat, muffled hospital light.
"Yes."
"Are you okay?"
"I don't know, but I have to go to the pharmacy."
"Yes. But are you okay?"
"I have to go to the pharmacy."
We walk quietly down the crowded corridor. White coats hasten by
us, and wheelchairs slow our speed. I pass the prescription to the pharmacist.
I wait.
I have been here so many times for so many different prescriptions:
the factor to replace the blood-clotting agent I lack; needles, syringes, and
alcohol swabs for infusion; Amacar to decrease my bleeding during dental
procedures; Ace bandages for my elbows, knees, and ankles; and so on. But
this time is different. It is true that without the blood product for my hemophilia,
I would have probably perished some time ago, but when I came in
the past for factor prescriptions, I did not feel as threatened then as I do
now. I accepted hemophilia as treatable. But HIV cannot offer me this. HIV
feels as all the weight there is in the world. And its publicity causes all to fear
it, even me. It is the plague of the 1980s and 1990s. And now I've got it.
The pharmacist looks to me, spinning the white bottle in his palms. My
heart beats unsteadily. My hands shake and sweat. My breath labors as if my
chest is gripped in a vice.
"Take one pill twice a day," he advises. "Morning and evening, and with
meals. Any questions?"
"No."
"Okay.
Next."
And he slips the AZT in the bag, as simple as that.
On the two-hour ride home from Chapel Hill, I watch the scenery blur
by on Highway 64. It changes quickly from university hospitals and giant
building complexes to farms, barns, and ranch-style homes. The few cows
not resting under shade trees cool themselves in the warm water of shallow
ponds, dotting the red ponds and the red earth we pass by while the extreme
heat causes a vapor to rise along the straight stretches of road. Mom cools the
car with the air conditioning, and its mechanical blow and the flap of the car
tire on hot asphalt gives a steady sound to our troubled ride. There are no
cities near me and my knowledge of HIV is married to the cities, to things far
away. I can't understand HIV's coming to me, sneaking into my blood under
the guise of help as it did. For this, there is no answer, and will never be.
My mother and I are silent. The road we are on leads to the home that
will never feel the same and the town that can never be the town it was to
me before. I already feel dead.
Mom wheels into our driveway and I notice that in our front yard, the
cherry tree no longer boasts vibrant purple-pink flowers but is green and
wilted from the heat, and the dogwoods that corner our lot have folded their
resurrection palms, have given way to the sweltering heat. They wilt and
slink their once-supple branches in a weak, weeping hang.
That night, I eat a solemn and quiet dinner with my family. Little is
spoken about my doctor's visit, but its tragedy is understood, our understanding
made manifest in our muteness. Later, I fill a glass in my bathroom
faucet and prepare to take my first dose of AZT, the inconspicuous white
and blue pill that rolls so naturally in my hand. It is like any of the other
pills I've taken, but it's the hardest one to swallow; it is only a temporary
healing potion.
I go to my room, flip on my stereo, and realize it's the first time I've been
alone with my HIV, and I'm not sure what to do with all the quiet. Not
comfortable in my bed, I move to a chair and pretend I'm reading a book;
on the floor I play my acoustic guitar, but the only place I find I'm okay is
behind my father's green vinyl recliner in our den. It rests downstairs in a
dark corner, and I curl fetally behind it, head between my knees, feeling as
if I'm in a safe shelter—a place where I can loosen my eyes and shed some
of the pain of a day.
I'm thinking about the battle ahead and I'm afraid of how this story
could end. How it might be the crippling last breaths of a pneumonia-filled
lung; how the virus might linger and finally take me after eating away my
sight, my mind, and all my weight; how I might never win the kingdom,
or marry the princess, nor be allowed to live happily ever after in my
mythical world. HIV is no fantasy. And with HIV there seems to be no
place for dreams.
I umbrella myself in the shadowed hue behind the recliner, my wet face
hidden in the dark. Although my fear quiets, it continues so achingly in the
hollow of my chest. I trace my slender fingers along the scars on my knees
and think of the consequences of such a thing: my hemophilia and those
necessary operations done so long ago and the factor treatments that followed.
I rock on my haunches and try to summon the magical spell that
will take this away, the abracadabra of another world. But it doesn't come. It
grows darker, darker, darker.
Morning. Rain patters against my window, and the clouds outside cast my
room in gray chalk. A slight roll of thunder shakes the rain-burdened sky,
then dissipates. I lie atop my bedcovers, unmoving and listening to the
thump of my family's footsteps on the floorboards above me. I shift to my
side; the sheets rustle. I remain still, my eyes open but staring at nothing.
Upstairs, Mom calls out that breakfast is ready, and a few moments later
Louise comes down to knock on my door.
"Mommy says it's time to eat," she relays in her thick tongue that so
few of my friends can understand. She has Down syndrome and a big, pale
moon-face that is her handicap's heritage. She wears thick black-rimmed
glasses that enlarge her shy brown eyes, and unlike the rest of my rather
slim family, her body is like a pear and she moves slow and wobbles like a
penguin when she walks.
I answer that I am coming, but I lie there a few moments longer.
When I finally ascend the stairs, I see my family gathered at the table.
Dad is tall and slender like a bean; his hair is thick and dark, while the
decades have painted feathers of gray into the roots as well as his bushy
mustache that sweeps the food and drink that passes before his lips. Mom
is as an excited insect, buzzing here and there and moving so quickly that
her thin outline can hardly be viewed. Her hands flutter; her feet light from
spot to spot.
"Good morning," she says in a hurry from kitchen to table, bringing out a
plate of scrambled eggs. She comes to me for her usual kiss, and I give her my
usual cheek, and she talks on in her usual cheerful voice. "I couldn't decide
on pancakes or eggs this morning, so I made both. Hope you're hungry."
I sit next to Anne. Like me, she owns the thin-bone physique of our
parents. Her hair is thin and straight and hangs to the shoulders like Mom's,
but is brown instead of Mom's silver-gray. She, too, has just awoken and
wipes sleep from her eyes and stretches her arms in an exaggerated yawn.
Then, the meal spread out and steaming before us, we eat. And later as the
table is being cleared, I pour myself coffee and return again to my chair. I
watch as Dad reads the paper; as Louise talks to herself and clips coupons
from the newspaper sections Dad discards; as Anne leaves and returns, presenting
a colorful blouse that she's considering wearing today and wishes
for Mom's opinion; and as Mom declares that it will look fine and resumes
sipping her own coffee across from me. Mom looks to me, smiles.
"We can get through this," she says. "We've been through a lot and we
will get through this, but it'll take time. I hate to see you so down. It will get
better. You have to know that. Your dad and I have already gone five years
with this, and it does get better, Son."
I force a smile, but soon lose it. "How can you always be so optimistic?"
"What other way can I be?"
My best friend and I are on our way to join friends at Myrtle Beach, where
we will celebrate my high-school graduation. As William drives his candy-apple
Sprite convertible, he chides me on my good fortune at being long
gone from a school that he has another two years to endure. The air whips
around us, threatening to blow off our baseball caps. My T-shirt fills like a
cotton balloon, and I feel the heaviness of salt and humidity in the air as we
near the ocean. The light taste of the sea strengthens on my dry lips as
we drive on. The beating sun reddens our faces and tans our arms as we yell
back and forth over the drone of the European motor and American wind.
It is summer, I've been on AZT for two weeks, and I've yet to disclose my
HIV to anyone.
In William's car, I feel safe, timeless, untouchable like a movie star frozen
on a slip of celluloid. As the sun glints off the roaring red metal, I posture
the actor's part: a dashing young man happily cruising the beach highway in
a catchy red convertible. I twist my shoulders, clutch the wind in my outturned
palm, and breathe out. But my HIV is still with me. Even the whip
of this wind can't blow it away.
After a long silence, William questions my gloomy pall.
"Are you okay?" he asks, eyes on the road. Part Middle Eastern, part
Minnesotan, William wears thin-rimmed glasses that shine brightly in the
sun; the frame's right leg disappears into a mat of thick-black hair that complements
a skin that easily tans.
"Yeah, of course I'm fine. Why wouldn't I be?"
He looks to me, his glasses now reflecting light so that his eyes appear as
tiny suns. "Just asking."
William pulls into a gas station, parks, and starts filling up while
explaining about small cars, small gas tanks, and the small islands Sprites
were meant to be driven on. It is our third stop. He shakes the nozzle and
bounces his car to make more room in the tank. He pays and we drive on.
The sun shines above me and the wind dries the sweat on my brow, and
when I gaze into the bright sky, my eyes water. Then I start to feel those
unannounced tears gathering, again, at the back of my throat. They come
so often now. Roost behind my tonsils and beckon for me to let them loose.
And then, I begin to cry.
"Oh my God. What's going on?"
"It's nothing. I can't talk about it." I look away and swipe my arm across
my face to dab the wetness.
We arch across the Waterway bridge as boats churn summer-warmed
water underneath us and as gulls canopy above. I gaze down the south
channel. It disappears in the heat's haze and the curve of the horizon.
Then I scan northward, following a cloud trail, catching William's eyes
scrutinizing me.
"I'm scared to talk because of what you may think of me."
William assures me that what I have to say won't leave the open space of
his car. I trust him, but I'm not sure what to do. But sometimes secrets come
spilling out because they have to, because they must.
"I'm HIV positive."
We come to the other side of the bridge, and William drives past our
Cherry Grove exit while my hands cover my rosy face. I sob again.
"Oh, man," William lets out. "Oh, man."
(Continues...)
Excerpted from BLEEDER
by Shelby Smoak
Copyright © 2013 by Shelby Smoak.
Excerpted by permission of Michigan State University Press. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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