An Excerpt
Transplant is approaching and I’ve been working on what I hope will turn into a memoir. It’s been helpful to write without expectation of anything, to journal and then be inspired to write even more.
I wrote this about a visit to the NIH in July 2017. Six years ago. Here it is…
Health update coming soon.
———————————— I’m on the Amtrak from D.C. back to Metropark Station, the closest Amtrak station to my parents’ house in Asbury Park, NJ when I collapse into a cafe booth. The man across from where I sit down looks at me grimly and motions for me to store my backpack above us. I do and slide into the seat, exhaling through my mouth so that my breath comes out in one short burst and rustles the pages of his newspaper. He frowns at me but I don’t care. My back feels broken and it’s hard to breathe through the pain. I feel like my spine is collapsing but I just left the inpatient hospital at the National Institutes of Health, where they did a full set of back X-rays and didn’t find anything. I should have insisted for an MRI but I didn’t. I can’t remember the last time I didn’t have back pain but this is so severe I cave and so I finally rummage through my purse for an emergency Oxycodone. I haven’t taken a painkiller in six weeks, my longest stretch without opiates in over 3 years. Long term pain management is a science that has yet to be unlocked, especially for people like me, patients suffering from degenerative genetic disorders that will kill us young and leave us miserable in the meantime.
Do you feel good, the residents ask before I am discharged.
I don’t know what that means.
A half hour into the train ride, I get up and get a drink. The woman in front of me, approximately my age, orders a Pinot Grigio and it comes in a bottle that is slightly smaller than the size served to a table of six.
“Wow,” she says.
“I know. Last time I ordered a bottle of the Amtrak House Red, I looked like an alcoholic,” I laugh.
She smiles. “Yeah. Fuck it, I need a drink. I just finished a meeting at the Department of Health and Human Services.”
“Really?” I ask. “I just left the NIH.”
“What kind of work do you do?” she asks, assuming I am an employed 31 year old woman, not some sort of genetically cursed, unemployed freak.
“Oh. Uh. I work in oncology,” I lie. “I’m a copywriter.”
Sure, I’m a copywriter. An oncology copywriter. It just happened to be nearly six years ago when I quit a mid-level position and applied for Social Security Disability.
We bullshit more about our “meetings” and how we needed a drink afterward, to decompress from months of preparation and research. And I do need a drink, to deflate the cloud of uncertainty that hangs around me every time I talk to my doctor about my future. If I have a future, I think.
The lies come so easy, and quick. There was a time it would have been true. But it’s a better story, a quicker entry point to conversation. There is no way to tell someone the truth without eliciting sympathy.
And I don’t want sympathy. I just want normal conversation, and a drink, and a moment of pretending the life I used to have, the one I complained about with fervor, is still mine.
We talk a bit more as she signs her credit card receipt and moves back toward her seat. I order my drink and look down and notice the hospital bracelets still looped around my wrist.
I cringe as the bartender notices it too and smiles a bit.
“I guess I don’t have to ask for ID,” he says, my age in big font branded on my wrist, next to my name and patient number.
I’m no writer. Just a number in a clinical trial designed to prolong my life by a few years. I am a literal statistic, my anonymous blood powering trials and scientists around the world with their reaction to different molecules and inhibitors.
I nod and go back to my seat and sip my drink.