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fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

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You’re in the hospital again, propped in bed with pillows keeping you from listing to one side or the other, and I’m sitting on a pink pleather chair I’ve pulled up next to the bed.

We watch Dr. Phil until 4:00. I always find this show melodramatic, but you seem riveted. You want to know about these people, their lives, their lies, what they’ll do with the information unveiled to them.

When Dr. Phil signs off, I switch on the Classic Country music station, and we talk. I tell you about a colleague who was in line to change her last name back to her maiden name, and the woman in line in front of her was legally changing her name to Dinosaur. We both laugh at what it would be like to go through life being called Dinosaur.

I tell you how when I was a kid, my friend Caroline and I played teenagers, and my pretend name was always Bonnie. Bonnie seemed like the name of someone with long blonde hair who had a lot of fun. Maybe I was thinking of Bonnie and Clyde. Bonnie was decidedly not like Jennifer or even Jen. There were at least three other Jennifers in every one of my classes. Not a single Bonnie.

“Have you ever wanted a different name?” I ask. I expect you to say no. I expect you to say you like your actual name, Marcel, because it has a musical lilt to it and it’s unusual, although surely more common in the French community you grew up in.

“Joe,” you type into your communication device.

“Joe!” I say. I don’t know why I’m so surprised. Just a regular Joe. Joe Schmo. I’m sure I’ve met a hundred Joes, and I can’t recall any of them offhand. Joe is a medium guy with medium-brown hair and an unremarkable chin.

“Why Joe?” I ask. But already I’m comparing my medium-Joe with your jutting chin, your loose mouth, your build which is on the small side of medium and, because you can’t stand, makes you seem smaller.

“Because it’s regular,” you type.

A prolonged and mysterious bout of vomiting brought you here to the hospital three weeks ago. Now you’ve finally progressed to soft solids—macaroni and cheese, mashed potatoes with gravy, chocolate or butterscotch pudding, one milk and one chocolate milk.

When I came in today at 2:00, your lunch was sitting on the rolling table next to your bed. You can’t feed yourself. You’ve never been able to feed yourself.

Cerebral palsy is your primary diagnosis, listed first in your chart, and so presumably the nursing staff is aware that you need someone to feed you. Although I should know better than to presume.

The tray sat there, untouched, within reach–if you were a person who had the necessary motor skills.

“Did you not want this?” I asked you.

“No,” you said with your voice.

“No, you didn’t want it?”

“No,” you said again.

I waited, and you typed into your communication device that no one came in to feed you. You didn’t ring your call bell because the nursing staff has told you that you ring it too often.

I rang for the nurse.

“No one came in to feed him,” I said.

“We’re short-staffed,” she said.

“He can’t feed himself,” I said.

She checked the electrolytes you’re getting intravenously as if that made the whole not-feeding-you situation a moot point.

“Fed and nourished are two different things,” I might have said, but didn’t.

I wasn’t about to feed you milk that had been left out for hours. You didn’t want it, anyway.

I wonder if Bonnie and Joe would have gotten along. Bonnie, with her long blonde hair, her flowy hippie shirts, her bangle bracelets. Joe, who would still have your black hair, of which you’re proud enough to have the gray dyed out, your olive-to-walnut-with-a-tan skin, your dark eyes, your perfect ears.

Joe would wear jeans instead of elastic waist shorts or sweatpants, button-up Hawaiian shirts instead of T-shirts, natty mahogany brown loafers instead of white socks and leg braces.

Bonnie would have all the social graces. She’d easily ask questions and follow-up questions of strangers at parties. Joe would be able to feed himself and walk and talk, but he’d be quiet. He’d like concerts, but also just being home by himself, reading or flipping through TV channels.

Joe would go out on dates, get married, have kids. Bonnie would be the kind of woman who sleeps with other women’s husbands. They would probably never even meet.

I know what my alternate persona is like, but I’m imagining yours. I don’t ask you to describe Joe, because I think it might be hurtful for you to picture a life in which you can walk and talk. It’s within the realm of possibility that I someday become less socially awkward. You will never be able to walk.

It’s unfair of me not to ask, though, even if it’s to spare your feelings. Because really, you’ve probably already imagined your life as Joe, and my not asking is basically saying that it hurts me too much for you to want something you can’t have.

“Marcel is such a good name,” I say. “You don’t like that you stand out?”

I regret it as soon as I say it. 

I want to be Bonnie so that I’m not weird and bumbling–so that, instead, I’m unique and confident bordering on reckless. You’ve always stood out because cerebral palsy makes your legs flaccid, your hands curled, your arms only semi-controllable, your face loose around the jaw and your breath inadequate to activate your vocal cords. There’s nothing you want more than to blend in. To be a regular Joe.

“No,” you say, a bit teary now. You use your voice to say it, not looking at your communication device but at me. In my make-believe, Bonnie is hard-hearted, acerbic, self-centered. If you were yourself and not Joe, you would be the one to soften Bonnie, the one to make her laugh at herself.

“My mother named me after the dead girl in Love Story,” I say. This fact has always made me a little angry because it seems like my mother gave up on me before I was even born. But when you laugh, I laugh. “Who names their kid after a dead girl?”

I’m trying to distract you from want, from longing. I’m trying not to acknowledge your sadness by papering over it with my own.

Your mother probably knew there was something not-right about you as soon as she saw you.

“Were you named after someone?” I ask. I imagine it was someone your mother adored, someone aspirational.

You shrug.

“A relative?” I ask.

You nod.

“That’s nice!” I say. 

My voice sounds so enthusiastic it hurts my ears. I imagine Dr. Phil asking me what’s really going on here. Onstage, with the lights on me, the cameras, Dr. Phil’s excessive empathy, I would say that I don’t want you to want to be someone else, because it means your otherness bothers you. I want you to be okay with being yourself, even if I’m not okay with being myself. I can stand my pain, but not yours.

“I like that you’re unusual,” I say. “It’s nice to not be like everyone else.”

You shake your head. “No.”

Jennifer Dupree is a librarian, an assistant editor at The Masters Review and a former independent bookstore owner. Her novel The Miraculous Flight of Owen Leach debuted in April. Shorter works have appeared or are forthcoming in Be Wilder: A Word Portland Anthology, Solstice, December, The Master’s Review, The Lascaux Review and elsewhere. She has won a Maine Literary Award as well as the Writer’s Digest fiction contest. “For a long time, I resisted writing essays about Marcel because it felt like his story was not my story to tell. It was only after I finally asked him, and he responded not just agreeably but enthusiastically, that I began to understand what it means to want to be seen.”


11 thoughts on “Joe”

  1. It takes a lot of courage and support to not being okay with being “other,” or “unusual.”
    Jennifer, you took a lot of courage to share what seems to be your personal angst, reflected back to you by Marcel.

  2. Bearing the pain of another. That’s empathy.
    Thank you for shining a beautiful beam on the unbearable lightness of being… different.

  3. So well written. I changed back to my maiden name, too. I wish I had thought of Dinosaur. Eating in hospitals. Does it exist anywhere if the patient can’t feed themselves or has someone to help? Visiting the hospital I’ve seen dozens of uncovered trays beside beds of helpless patients. I asked once if candy stripers or volunteers could feed people. No, was the answer. They had other things to do. The nursing staff is overbooked always. Peeing is another problem. One aide told me to wet the bed if they didn’t come. I asked her if that wouldn’t be more work for her? She just shrugged. With my broken shoulder, I could barely move, especially to shrug back.

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