Bleeder Read online

  The pharmacist pushes her glasses to sit flat against her eyes as she reads from her computer screen. “Oh, honey,” she says with plaintive concern, “it’s almost $60,000.”

  “$60,000,” I repeat.

  “Yes . . . Your Mononine is almost $1 a unit and you need 4,000 for one treatment. And you’ve gotten a month’s supply today. That other script ain’t but about $1,000, but still. It ain’t cheap. All that research and development that goes into it. That marketing too.”

  “And I have to pay the full amount today?”

  The pharmacist fidgets with the box of factor and the small bottle of AZT and swivels her head to peer behind me. “I wish I could help you,” she says, “but yes, I’m afraid so. I can’t let these go without payment.”

  I watch as another pharmacist in a white coat counts pills out on the table behind the lady. I see blue pills slipping into an orange-clear bottle and watch as another pharmacist begins a similar task of counting, dispensing, and labeling, repeating the process with endless precision.

  “Honey,” the lady before me says, drawing my attention. “You’re gonna have to pay today or come back when you get it straight with insurance. I’m sure it’s just some kind of silly error. But I got others I need to help, so whatcha gonna do?”

  “I don’t know yet. Lemme make that call and I’ll be back.”

  “All right, chile. I’ll keep this out awhile.” She breaks her eyes from mine and looks over my shoulder. “Number 216.”

  I step aside and go in the main lobby to a row of pay phones where I dial my family collect. Mom answers and accepts the charges, and while she’s excited to hear from me and launches a barrage of questions about college, my weekend, my classes, I have to quiet her and ask to speak to Dad.

  “Why honey? What’s wrong?”

  I tell her.

  “Oh my lord. That’s insane. I don’t know what you should do,” she says. “You have to have your medicine, but oh my. That’s so much money.” I hear her thoughts gathering. “Hold on a minute,” she says, “I’ll get your father for this.”

  Dad answers. I hear him suck in air and guess that he’s smoking as I explain the situation.

  “Well, Son,” he says after a pause, “there ain’t any way we can pay for that today. Even if we could (and we can’t) but even if we could, I don’t think I’d recommend doing that. What’s the odds that insurance would actually pay us back anyway? I don’t trust them one lick. I couldn’t take that risk.” He smokes. “Goddammit,” he says. “Goddammit,” he says again. “That goddamn insurance is good for nothing.” Smokes again. “Okay, Son, I’m gonna have to get on the horn at work tomorrow and get this thing figured out. You got enough factor for another day or two?”

  “Yes. I should be okay. I have two treatments left.”

  “How ’bout the other?”

  I pause. “I’m gonna be out tonight.”

  “Tonight! Goddammit, Son. Goddammit, goddammit.” He smokes. “You gotta refill your medicine before you get that low. Damn.” He puffs again. “Okay. Nothing to do about it now. That’s the one for a thousand?”

  “Yes, Dad. That’s what she said.”

  “All right then. Reckon you can put that on the card and hope to hell we get reimbursed. Goddamn, Son. Damn.” I hear the lighter flicking in the phone line. Then a long puff. “Okay. The other you’re gonna have to leave. But once it’s straight, and I hope it’s straight before the sun goes down tomorrow, but once it is straight, I’m afraid you’re gonna have to turn around and drive back for it.”

  I’m thinking about classes and homework and the fatigue of driving there and back again, but really what choice do I have? This is important. This is real life.

  “Okay. I’ll do it. I don’t guess there’s any other choice.”

  “I reckon not and I’m sorry for it, Son. Awful sorry. But these things happen. Hope you understand. There’s just no way for us to pay this thing outright. It’s too much goddamn money. Especially when you’ve got insurance!”

  I hang up and return to the pharmacy window and hand over the Visa for the AZT which, once accepted, I slip into my backpack, leaving the factor.

  Monday afternoon, Dad calls.

  “It’s figured out,” he says. “I got it all straight now, Son. Some damn notion they had that we’d dropped you at eighteen. Goddamn them. Think they must do that to all their high-profile clients. Anyway, called the pharmacy and you’re good to go. It’s there and ready for you. You can pick it up anytime but remember that hospital pharmacy closes at five.”

  “Okay. Thanks, Dad. I’ll go tomorrow. I’ll have to miss my afternoon class, but it’s the only time I can go.”

  And when we hang up, I crack open my philosophy textbook and read ahead for the lecture I will have to miss.

  THE REGULAR

  DECEMBER 1990. IT IS A FAMILIAR SCENE: THE HOSPITAL EXAMINATION room. Here, I wait for Dr. Trum and my six-month checkup, which I have fit in over the holiday break. I twirl my fingers round, lean my head against the wall, and pretend to sleep, but can’t, so I read posters on the wall—one a diagram of the HIV virus. So that’s inside me, I think as I study the blue cell and those broad red arrows that mark HIV’s path of invasion. It is as a military map: the Visigoths crossing the Danube, the Germans the English Channel. The invading medicine sallies against HIV from the left, the right, above, and below, and, as the graph depicts it, AZT vanquishes HIV. I cross my fingers and hope it so. It has now been six months since I have been on AZT and today’s test results should indicate the drug’s success, or lack of.

  The door opens; the dentist enters. She looks into my mouth, peels my lips up and down to reveal my gumline, and she picks her metal instrument into my molars.

  “It’s soft back there. I’m afraid you may be developing a cavity which we need to take care of. Can you come in to have it done?”

  “A filling?”

  “Yes. You’ll need to factor, of course, before the procedure.”

  She offers me a Monday in late January.

  “What about a Tuesday or Thursday? I’ll have to miss my Monday classes next semester, and I’d rather not.”

  The dentist consults her calendar, leaves to make a phone call, and returns with an available Thursday in February. I accept. Then a half hour passes before the physical therapist enters, waking me from a light doze.

  “I’m not sure I need to see you today. I’m seeing the orthopedist in the afternoon.”

  “Are you? That’s good. But all my measurements are routine. I visit all the hemophiliacs in the clinic. It’s my job.” She lays her folder atop the desk to indicate that she’s staying. “It won’t take long. I promise.” She bends me, stretches me, extends me, measures me, and finally leaves me, a little more exhausted.

  Next, the social worker.

  “So how are you?” she asks.

  “Fine.” I trace my finger along the white paper covering the examination table.

  “Okay. That’s good.” She writes some notes down. “Now, do you care to be more specific?”

  I feel she’s pressing for some confession, something about the unbearable weight of HIV, but what can she really do for me? What will I get from crying my infected heart out to her? “Okay . . . Well . . . I like school, college.”

  “Now where are you? UNCW, right?”

  “Yes.”

  “And have you felt adjusted there?”

  “Yes. Sure. It’s fine. Like I said.”

  She scribbles on her yellow memo pad, pauses, and looks at me with dark eyes that catch a flicker of sunlight from the window.

  “And what about your HIV? How does that make you feel?”

  Like a victim. Like a man before the firing squad.

  “I can’t imagine what that has done to you,” she says. “But you’ve got to know that you are not alone.”

  Yes I am.

  “We have groups here at the hospital that meet and help one another cope with this, and there are hemophiliacs
just like you who come. Perhaps it would do you some good to talk about this with one of them. Have you talked to your family at all?”

  No. Not really.

  “What about a friend?” she continues. “I know it must be hard to open up, especially with the stigma attached to HIV, but do you have a friend that you’ve told?”

  I stay silent. I have nothing to say.

  She purses her lips, retrieves a card from her pocket, and passes it to me. “Here’s this if you change your mind and decide to come to a meeting. We have different ones, and I’m sure we could accommodate your schedule. We even have some that meet on Saturdays. I can’t make you come, but I do think it would help. You have a right to be upset, and this could be a forum for working through that. You shouldn’t go this alone. It’s too much for anybody and there are lots of people willing to help.”

  After the social worker leaves, I stretch out on the table and roll onto my side and gaze out the window to the parking lot below. From here, the cars remind me of the Matchbox toys I once played with. Then there was such simple joy in pushing a metal car across a linoleum floor or atop a bedspread or through a carpet of shag—just going from one side to another without a concern of why or what for.

  Overhead, the sun radiates feebly through the winter sky. A sphere of weak fire in a dome of cold blue, it hangs pendulant in an endless ceiling of pewter.

  Eventually, Dr. Trum enters. We shake hands and then assume our roles: he the doctor, me his patient.

  “It’s probably been a strange couple of months for you since we last met,” he says as a way of transition. “So, how have you been anyway?”

  “Okay, I guess.”

  He shines a light in my eyes to check my pupils. He lays a cold stethoscope against my chest to listen to my still-beating heart, my breathing lungs.

  “Sounds good here.” He removes his stethoscope and drapes it across his neck. He examines the scars on my knees. He presses softly with his thumb and index finger against the swelling in my ankles, both tender with blood.

  “You’ve had a few bleeds in these, I see. Probably due to all the walking you’re doing on campus.”

  “Yes. Nothing major, but kept me down for a day or two.”

  “That’s good. Just remember that rest is best when these things happen . . . I see that you’re visiting the orthopedist today,” he says as he flexes my ankles and measures their inability to bend. “He may recommend a walking aid for you. Something to reduce your bleeding into these joints. My worry is about your increased bleed episodes since starting college. I fear arthritis may soon set in. We want to slow that down as much as possible.” He sits down and opens my folder, the size of an “S” encyclopedia.

  “Are you tolerating the AZT? Had any side effects? Dizziness? Nausea? Light-headed? Muscle spasms?”

  “No.”

  “Good. That’s good. We want this stuff to work for you.” He jots notes. “Have you skipped any doses?”

  “No. Well . . . Once I forgot to take it before bedtime. But that’s only once.”

  “Hmmm . . . Well, okay. But you can’t make a habit of that. You have to stay on top of HIV with the AZT,” he says to me with a fixed and intent stare. “Don’t skip any doses,” he adds before turning his attention to a slip of paper. “I have your lab numbers back from last visit, and unfortunately your CD-4 counts are still dropping.”

  I inhale quietly and feel sorrow drawing down my heart.

  “We’re going to keep you on AZT. But soon, not today, but soon we need to think about adding some preventive measures with AZT. We want to stop the infections before they start and try to halt them before they spread. The thing you need to keep in mind, though, is that we are still learning about this thing. That things are changing every day with HIV, and that it is going to get better. I’ve got patients with counts a lot lower than yours and they’re doing great, leading successful lives. We’re finding that this thing just might be manageable,” he says as he closes my folder and rises to leave.

  Ending there, he shakes my hand and pats me on the back as a father might. As if that’s enough.

  Next, I follow the familiar hallways to the orthopedic clinic, stopping at the snack bar along the way for a quick lunch. While Dr. Trum treats my hemophilia (and now my HIV), the orthopedist repairs the damage internal bleeding enacts upon my body, for factor isn’t enough to heal me. I am a regular here too. The receptionist knows my smile, the nurse my weight and temperature, the doctor my scars and deformed bones.

  The summer I was eight I had a synovectomy. I spent June in traction, July in water tanks, and August and September on crutches relearning how to walk. By October, I could hobble about the schoolyard, happy, I suppose, to be walking again. And then when I was ten, the orthopedist had to cut me again to drain pooled blood from my knee. Seven weeks later—after traction and therapy—I was discharged to limp about on crutches until my legs could hold my body again, which happened two months later. Those surgeries’ memories, however, are the long red scars forever etched along the uneven curve of my patella. Due to their unsightliness, I seldom wear shorts, and then only to swim.

  In the orthopedist’s waiting room, I rustle through a magazine as the dull afternoon passes. A young girl, a white cast sealed round her leg, crutches to a nearby chair, where she lowers herself with her mother’s aid; a man across from me lifts a soda with his good arm, the other braced in a sling; and a boy wheels across the waiting room, his legs lifeless and dangling below him and his chair.

  My name is called. I rise. I greet the nurse and am told to visit X-ray. The doctor has ordered a series of photographs.

  There, I disrobe. Goosebumps rise along my flesh, and I retrieve a thin white blanket, wearing it like a toga, while I wait again in a smaller, more secluded alcove. When the technician enters, he explains that I am to have a full workup today, that all my joints are going to be X-rayed.

  “And how long will that take?”

  “Hopefully, if they all come out, I can have you out of here in an hour.”

  He lays me on the metal table, slips a film tray into his machine, aims the camera’s lens over my knee, disappears behind a steel shield, and snaps a button. I hear a click; then he returns, stretches my legs out, pushes my arms over my head, and positions the X-ray, an act he assumes with tedious exactness and with no sense of time nor of my discomfort before he darts behind his screen again. The machine clicks again, and again he returns to pull my body as if it is taffy.

  As he repeats the process, again and again, the cold slab of metal chills my skin. He X-rays my knees, my ankles, my hips, my elbows, my wrists, and my spread fingers, and when, two hours later, I am given the large red folder containing these pictures, I pass this to the orthopedic nurse, who promptly thanks me and tells me to wait again, adding that the doctor will see me momentarily. I sit. The girl with the cast and the man with the sling are gone, but the boy now sleeps with his chair parked against the waiting room wall. My head feels light, my stomach empty, and I curse myself for not stopping for something to eat after the X-ray. It is now well into the afternoon, and my lunch isn’t holding me. I should have been more prepared and brought something: a granola bar, a pack of crackers, a juicy steak.

  When the orthopedist and his resident—a foreign medical student with oil-black hair, dark eyebrows, and a thick accent—arrive in the room where I wait, storm clouds gather in the dark sky, casting an ominous glow on the late day. I am again pulled and twisted, bent and straightened, measured and assessed. The orthopedist requests that I walk down the clinic hallway, so I remove my shoes and socks, roll up my jeans, and walk as best I can. A nurse hurries by with her quick and easy step, and the steady patter of her soft white shoes echoes through the corridor. My body gives on my left side, and my knees do not straighten as they should, but I walk (limp), turn around (yaw like a ship), walk (limp) more.

  “Okay. That’s good enough,” the orthopedist calls out.

  When we return to the room,
he clips a few of my X-rays to the lightboard and places a thoughtful finger to his bottom lip. His eyes have a faraway gaze and are deep in study.

  “It looks as if you’ve suffered more damage to your knees and ankles, and you’re losing rotation in your left hip.” The medical student takes notes. “I suspect this is due to several things. For one, you have hemophilia and this is its nature. For another, you are now at college and, well, you’re probably walking more than you used to. This increased activity is probably adding further aggravation to your joints, which are already under strain from hemophilia. This isn’t an ideal situation and we have to consider ways to counteract this deterioration of your joints.” He again places his finger to his lips, removes it. “A cane could help relieve some of the stress you’re experiencing, especially on your left side, which seems to be deteriorating more rapidly.”