November 2007
March 24, 2024
I wrote the following when I was 21 years old-- before I was diagnosed with diabetes, before they found the genetic mutation that was the key to my fate, before my care was taken over by the NIH, before I heard the words “bone marrow transplant”. I was a senior in college in New York City, and I had no idea that I was growing a huge tumor in my neck, and that I’d be diagnosed with cancer a week into 2008.
I was just a kid who loved to party and live in the city and watch basketball and I didn’t understand why I was constantly sick, why small infections blew up into disasters requiring a hospital stay.
This is one of those times.
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Excerpts from my diary: November 10, 2007.
My tooth hurts on Wednesday and by Thursday I am in agony. I shove the pain underneath my pillow with the shirt I wore to bed and I get up and pull on my pants, half-heartedly brush my hair, grimace into the mirror and I go to school.
By noon, my tooth has become a flashing light, a hazard sign on the side of the road
I can’t chew, so I slide food down my throat. At lunch I choke on my salad and Brendan whacks me across the back in the cafeteria.
After awhile, I can’t ignore it so by Friday I am in the dentist’s chair, and on Saturday I am swollen but fine but I decide to miss Halloween because I cannot--will not--drink for the fun. And though I have always thought of my Halloween costume as my chance to shine, I’m tired and I do not have the energy to create and drink and forget.
So I get on the train, heading to my parents in NJ. I get pissed on my way to Penn Station because I can’t find a cab and this is unfair and I am entitled to something being easy, I just want a cab. I just want a cab to take me home.
My dad picks me up from the station and hands me the soup he knows that I like and I lay in my bed in New Jersey and watch movies; maybe the medicine will work. It never does, but maybe.
But Sunday I wake up and my face is a wreck, all shapes and circles, all hard lines disappeared underneath this mask. My mom comes upstairs and says “shit” and we are back on the turnpike, I am in the passenger seat, slack and out of control. In the ER they call it edema. And because I am special and worthy, and because once at Children's Hospital in Philadelphia they called me the mystery child, They Are Confused.
And because I am entitled and young and susceptible, they rush my room assignment and I do not complain when I get a bed in the wing for old people. My roommate is at least 80 and naked and there’s just so much awful about aging alone and this is not graceful.
The surgeon visits and says “We need to go in and drain this”. My mother leaves the room because I’d rather be alone to cry without embarrassing myself; I don't even want my mom to see. The scalpel meets my skin and my gums bleed and I kick the sheets and I scream on the inside and I am told how tough I am.
I get back into my bed, wiping blood from my face and stubborn tears from my cheeks. I call the nurse for morphine, plug in my headphones, and write so that I can remember this feeling, this pain that I will push underneath my pillow the second I get a moment alone.
On Monday, they free me. I go back to class on Tuesday, in Memorial Hall, I am rolling through the hallways, a smile on my face, playing for the cameras.
They all call, leaving messages on my phone, asking, wondering, caring. And because I'm fucked up, I don't return the calls. I don’t want to talk to anyone. I don’t want to tell them that it’s okay. I am tired of answering the same fucking questions. NO. I don’t feel well. And I don't feel like repeating it. I lay with my pain and I keep it for myself.
Before bed, I take the antibiotics for my infection and I take the hospital's parting gift, a bottle of Ambien. I take a hit of the joint my roommates pass around and I lie down, my brain lighting up in places, too young for this. But I cannot function right now without help. I am flailing.
Literature and War is my first class today and I trudge downhill--when I say trudge, I mean trudge, because all of the time, there is snow on the ground. It feels like that. Like four feet, minimum and I have to get through nothing, something that does not exist, just to get to class.
I know it’s from the pills but I cannot shake this blanket of exhaustion and I drink coffee and my hands shake. I try to take notes and I try to focus and usually I own this class, my hand perpetually in the air; I know this shit, I know this book, I own, I own. But my tongue is heavy in my mouth and I imagine that I have suddenly gained a speech impediment and that’s my last clear thought before my eyes start to narrow.
It’s all I can do not to pass out but I fail and I see Mike look at me across the row, concerned, reaching. One word escapes my lips before I slip to the floor.
I wake up much later, back in my bed and I’m surprised to hear that I walked home myself that I said I was okay, that I only missed one class, only one class. I sleep more but I miss my friends and I force myself upstairs. We put on the DVR and catch up on Gossip Girl. I feel awake now, and not everything is shit, and we are laughing.
March 24, 2024
Finding this is a bit of a mindfuck as I don't remember most of it. I remember fainting in class, but not the tooth infection, or the pain, or the admission. I don't even know what hospital I went to, but my best guess is Mount Sinai.
At this point in my life, admissions were scarce, and so this was an event. Which I think you can tell from my telling of it, which I did not edit. It's hard to believe I was somewhat normal. It feels so unbelievably far away.
I never imagined this is what my life would look like at 38. I honestly never thought I'd ever get this sick.
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Sending love to you all.