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10. HbSC [365 project]

Symptoms

Bone Pain: I am fragile.

Breathlessness: High school track team. Sprinter by choice and necessity. Awkward one, at that. Never very committed or competitive, but enjoyed running for the feeling of lightness. Of not thinking or feeling, just movement. Muscle, power and movement. The 55 meter dash — a race determined by one’s release from blocks — was 181.5 feet of enduring on one breath.

Delayed Growth: “You are much larger than the other children.”

Fatigue: There is no fortune in sleep when in the waking hours the body still yearns for rest.

Fever: Mother no longer uses the thermometer. She touches my face with the cool back of her hand and she says, “How do you feel?” I do not reply. She answers for me, “You’re warm. No words?” I shake my head. “Let’s go to the doctor,” she says. I like the feeling of a thermometer lodged under my tongue, the way the metal tip warms when surrounded by frothy saliva. I like when the nurse comes to read the thermometer; I momentarily fight back with teeth clenched around plastic.

Poor Eyesight: In the night, when the block is quiet and people have found themselves tucked away, I walk outside without my glasses and am comforted by melting lights and the shadows of shapes that never came to be.

Stroke: Family history. No data.

Skin Ulcers: No data.

Signs and Tests

CBC: Always a morning lab technician with one of those comically loud, lab shirts. Disney, you know? They carry a white, frosted plastic caddy filled with butterfly needles, alcohol swabs, gauze, and blue, purple and pink tubes for collecting blood. You are sleeping and they rouse you by turning on the intense fluorescent lights and quietly mispronounce your last name or first name or both. You show them where your arms are bruised from repeated attempts at finding a good vein. You confess your veins are bad. And you squeeze your hand while they tie an elastic band around your triceps. They palpate your skin, now covered in the remnants of hospital tape, with a gloved hand and say they’ve found a good one. You look to see where, file the location into an easily retrievable part of your memory, close your eyes and anticipate the prick.

Blood Oxygen: A red counting clamp on the index finger.

MRI: A metal womb.

Treatments

Folic Acid: You pocket the folic acid tablets that your mother gives you in the morning before you have to get on the school bus. You are smart enough to put the pills in a sandwich sized ziplock bag because if you don’t they will get crushed by the weight of your school books or by your oversized hand. You collect the pills all week and by Friday you have 5. You don’t know what the pills are for, you don’t know these pills will help prevent nerve degradation caused by that disease you have. You barely know what a nerve is. All you do know is that the pills are small and white. And the pills taste like chalk. And, for some reason, you love the taste of chalk. You know that if your mother found out you’d been pocketing your pills, she would sit you down and give you a lecture on your disease. You don’t like it when she does that because she becomes incredibly emotional when she talks about you being sick. She becomes emotional and then withdraws from you. She is a shell of a person until you get sick and maybe reality hits her, or she gets scared enough at the thought of losing you, and then she is comfortable to show you love only then. You count out your pills — one, two, three, four, five — and place one on your tongue at a time. The small white pills dissolve into grit. You have sand in your mouth and you are fearful of swallowing the pathways to the ocean.

Blood Transfusions: Grandmother says that if you eat enough beets you’ll never need to have one. So you try to eat beets but find them disgusting. You are too young to own the word ‘disgusting’ so you spit out the beets and refuse to eat more. Mother juices the beets with carrots. She drinks a cup and confidently opens her mouth, smiling with her eyes, showing you the mixture is palatable. You try to drink it but before the first lump of liquid can make it down to your stomach, the contents of your insides navigate their way up the slide from which they traveled down and you vomit all over the kitchen floor. You cry. The beets never saved you. When you finally get that blood transfusion, you want to cry but pray instead. You don’t know if God can hear you, or if there is a God, or if you want there to be a God all of the time or just now, when you need one. You pray for the blood to be safe and for you to get healthy. You pray that you will never have to get another blood transfusion. You ask God why the juice of beets cannot be blood?

Narcotics: A nurse administers a bolus every two hours depending on how you feel. Every fourth hour, you know your pain has mounted into an experience so solid, you cannot help but convulse. You cry. The nurse comes in, with a needle filled with morphine and a needle filled with Benadryl. She asks you how your IV is doing and you say that are your arm is swelling. She looks at your IV and says that there are a few more hours left in that IV. She says your veins are frustratingly difficult, so tiny. She asks how your pain is and you make a face that corresponds with the number you utter. She knows the numbers are arbitrary and she feels badly for asking you as she can see your sheets are wet from tears. She cuts off the flow of your IV and flushes out the line reaching into your body. She takes the syringe full of morphine, sticks it into one of the arteries of the IV line, and pushes the plunger down. She asks you if it burns and you think to say yes, but you say nothing because your pain is gone. You do not notice her place the morphine syringe aside and starting with the Benadryl, which you can feel immediately  — a taste of metal in the back of the throat. You try to describe the sensation to the nurse —  how weightless you feel, how you want to move your arm, how you know your cells are no longer torturing you — but you can’t. The nurse looks are you and says, “Get some sleep, dear.” You are asleep before the nurse can pull the curtain shut.

Fluids: A nurse from my childhood taught me how to set the flow rate for the IV pump. This is necessary information when you unplug an old school IV pump, like if you have to go to the bathroom or something. The nurse taught me because I asked. I am weirdly curious about hospitals. She also taught me because she knew I wanted to be self sufficient. I ring nurse’s bell a lot less than other patients.

Complications

Parvo Virus B19: I’d lost the ability to walk. Mother carried me down the stairs and into the back seat of a taxi. The longest ride to the hospital. Every groove in the street coursed through my body and I wailed in pain. I could not sit nor could I stand. Waves of pain flowed from my hips to my feet. It took them three days to figure out what was going on. Three days of pain I didn’t know was possible to feel. Pain I was sure would kill me. I was not far from wrong — had I not come in when I did, something terrible would have happened. Putting ‘something terrible’ into words more descriptive than that will create a crevasse too wide to bridge. Something terrible doesn’t mean something final. It just means something bad. Parvo Virus B19, in normal children, is indistinguishable from the common cold.

Acute Chest Syndrome: I have pneumonia but don’t know it. I smoke cigarettes on top of a hacking cough. I see three shit doctors who tell me that I’ve got a cold. Well, two say I’ve got a cold. The third is convinced I’m pregnant. I laugh when he suggests that because pregnancy is basically an impossibility for me. Unless I’ve been mysteriously upgraded to Virgin Mary status, there’s no pregnancy here. A month of smoking and a hacking cough. Then three days of no eating, no moving, just sweating. Three days in and I have a fever of 104. Mother comes with me to the hospital. I have pneumonia and acute chest syndrome. The cells in my lungs have joined each other — I like to think. They find company in the jaggedness of each other and obscure normal functioning, like the transference of oxygen, in my chest. I purge the liquid from my lungs through my mouth and in the basin of clear fluid I hope to see millions of my cells, crescent moons tangled together.

Aplastic Crisis: Hemologbin levels drop rapidly and your bone marrow cannot compensate so your body cannot produce reticulocytes — immature red blood cells. This has been happening for days, while you were with your significant other. This is happening when you are on the Chinatown bus and you wonder why you can’t even take a few seconds to fantasize about the weekend you just had with your long distance lover. You cannot think about anything because there is a distracting restlessness in your legs.

Vaso-occlusive Crisis: If you asked me what the worst part of being born this way is, I’d say: the feeling of sledgehammers repeatedly dropping on the same part of your body. I’d say: waking up and not being able to move. I’d say: improper joints. I’d say: the all too common pain that accompanies moving my body.

Splenic Sequestration: I tell my friends to thump the left side of my stomach. Right below my ribs. That’s my spleen, I tell them. They can feel the rock hard, bulging organ. Some of my friends are amazed; some jump back in horror. I tell them I’ve got cells living there. Cells that were meant to stay for a night but instead have taken up semi-permanent residence.

Narco Abuse: No data.

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