from BLEEDER: A Memoir by Shelby Smoak
Chapter 1 – Blood
Copyright © 2013 by Shelby Smoak. Reprinted with the permission of Michigan State University Press.
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 some- thing 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.
“Yes. AZT will help stop HIV’s spread.”
I am handed a slip of prescription paper and ushered back to the lobbywhere 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.
“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?”
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 under- standing 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 out- turned 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.”
He says it in a whisper, barely catching in my ear over the slowing motor’s idle. The wind slackens as we stall in North Myrtle Beach traffic. It is hot and getting worse. A trickle of sweat slides from beneath my armpit, runs its rivulet down my side, and disappears into my dampened clothing.
“Wow.” He exhales quietly into the windshield, a long and calming breath. “Is this because of your hemophilia?”
My eyes close between my hands and my mind seizes upon a memory: in my parents’ backyard as evening fell, Dad sipped iced tea from a sweating glass while Anne jumped rope nearby on the patio. I’d been waiting all day for the heat to abate so that I could play outside, and I’d been anxious for night, for fireflies and their light’s flicker. I watched as the first tails sparked. Still able to see their bodies in the dark purple light, I chased their glimmer through the fresh-cut grass and cupped their fragile bodies in my palms, watching my hands glow a strange red as the bug’s tail ignited. After I forced their flashing bodies into thick-glass Mason jars, Mom punched air holes through the lid, and when bedtime came I propped the jar on my dresser and watched their tails dance light across my room as crickets hymned songs outside my open window. Lying flat atop the sheets, catching the cool wind from an electric fan, I played like a little god and wondered if I should let these fireflies go the next day or if I should keep them here for as long as their tails still lighted, for as long as their lives still flashed. There was such power and consequence in my decision and I knew it, and I knew, too, that fate was a fragile notion.
William reaches across the seat, rests his hand on my leg. “You’ll get through this,” he says over the caterwaul of angry horns snarled in hot traffic. “I know it.”
I tell him that I am scared, that I don’t know who I should blame, that I can’t understand why it happened to me, that I don’t know what I am supposed to do.
“I don’t know what to tell you.”
“I know. There’s nothing to say . . . But at least I can talk to you now.”
He wheels the car past the Pavilion, turns, turns again, and we ride on the last road before ocean. The Ripley’s Believe It or Not museum is there, advertising its miracles. Along the sidewalk, bathing suits bob and tan bodies bustle by, and I watch a group of girls pass, their strained bathing tops bouncing with their gait. One swings her blonde strands behind her shoulders and reveals to me a stretch of skin, and it doesn’t seem to me that I belong anymore in such a physical world, in such a sexy place. Everyone here seems so healthy, so happy.
I wipe my eyes.
“Does anyone else know?”
“No. Well, my family. But no one else. Please keep it a secret, too. Don’t tell.”
“I won’t. It’s between us.”
William’s hands tightly grip the steering wheel. He stares silently ahead as we move forward slowly.
When we arrive, we find our other friends enjoying long afternoon naps and although William joins them in sleep, I am restless and in want of an ocean swim, so I head to the beach, alone.
I love this time: a warm fading sun, the constant ebb and roll of the ocean’s sound, a rhythm I can count on. I remove my shoes and press my feet into the sand. The sun reddens my back as I face the sea, watching wave after wave after wave of salt water wash over a geography of silt and brine. The effortless curves of the ocean continually fold atop themselves, salty tiers of white foam. The water rides lazily around my feet, then retreats, pulling sand from underneath my soles. I wade deeper. Stroke out beyond the breakers, and from here I can see the fading blue of the horizon, the few birds that give form to this plain and shapeless sky. I slender my long body in the water and imagine the lands beyond my limited sight, cleft by the Earth’s curve. I think how all that lives by water lies undetected beneath this giant flat surface.
Tucking my legs tightly to my stomach, I grab hold round the knees, dip my face in the sea, feel how the current moves me, tugs me north, then east, west, then north again in the undulating water. I’m a pale island of flesh in this quiet ocean of fish. I am moored to nothing.
Uncurling, I swim with the tide. Swim more. Toward the pier, then back. Float freely. I return to my towel on the sand, where I no longer cast a shadow. The marine sky fades black all around me while the stars begin to peek their dim faces on a moonless eve. Salt water drips from my hair, clings to my eyebrows, tightens my pores, dries to my skin. I think of nothing, but enjoy this simple moment of living. I float in it and am in no other place. And I feel inexplicably cleansed.
Copyright © 2013 by Shelby Smoak. Reprinted with the permission of Michigan State University Press.