You can only listen to, or read, what doctors have to say for so long. Today, in our Friday, “reflective writing” slot, an essay from someone in the bed rather than beside it.
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After ten days tethered to an IV of cyclosporine, the surgeon explained that he would remove my colon, create a stoma, and hitch a colostomy bag to my abdomen. Once I was stronger, he’d reverse the surgery to create a j-pouch. With a ballpoint pen, he drew a fine-lined approximation of my guts.
“People sometimes say their stoma looks like a rose.”
I recalled his words every time I showered and my rose spit shit down my leg.
This had been my sixth and longest hospital stay in as many months. As my health declined, so did my independence. Most parts of my identity, which I’d worked so hard to achieve, were replaced simply with “Patient” as I approached 30. After hospital stay number four, I had to quit my job as an Off-Broadway house manager. By the 7th and final stay, my serious boyfriend had left me. I couldn’t afford rent. I needed my mother at my side for reassurance, for advocacy, for baths, for reminders to write thank you notes for all the flowers, because I was no longer capable of any of this on my own.
Once I began to identify myself as a Patient, I became aware of how others only saw me as this.
There was a roommate who asked me what I was in for, like we were inmates gambling for loosies instead of waiting for our clear liquid dinners. She’d never heard of ulcerative colitis, and my disease intrigued her like a social status. “Are you gonna die from that?” she asked.
There was another roommate who viciously excoriated her husband whenever he visited. She wanted him dead. He wanted her dead. They never acknowledged that I was two feet away in the next bed. Never cared about my existence.
There was the custodian called after I had a humiliating accident in the bathroom. He threw down a couple of paper towels, planted his foot and dragged them through my mess, glaring.
There was the nurse who treated me like a drug seeker. (Of course I was seeking drugs. I’d just been sliced open and stapled back together from belly button to pelvis – for a second time). I finally asked her why she was being so mean to me. Something about me stirred up such contempt inside of her.
There was my father, who most of the time considered me irrelevant, requesting my mother stop calling him with updates about my health. Emails were fine.
And there was my boyfriend, then a clerk for a United States Supreme Court Justice, who visited from DC on weekends to sit by my bedside and sulk.
“I’m going to sign you up to take the LSAT,” he said, because I wasn’t doing anything with my life. I weighed less than 100 pounds and my hair was falling out.
Of course, there were people who saw past the Patient and saw me as my whole self - my brothers, my friends. My mother always believed I was more, even if I didn’t believe it myself. And my father finally admitted how worried he was, how badly he felt that the rest of my identity had been stripped away.
I had been in and out of ERs and hospital beds so often that there was no projecting who I might be after I survived all this. Because even at my weakest, I never thought I was going to die. But who would I be when I was no longer the Patient? When would I stop perceiving myself as one?
Sixteen years later, I know who I am without pause: librarian, wife, writer, South Philly dweller, dog mama. I’m at a healthy weight with a full head of hair, and I sure as hell never took the LSAT. Facets of my identity I never thought I’d achieve, even as I slowly regained my health and independence.
But I know the Patient is still someone who is a part of my identity, whether I like it or not. As if it’s not up to me. I’m not sure I’ll ever have the power to overcome how much others made me feel like nothing but The Patient, no matter if my health never calls for another hospital stay ever again.
Kristin Inciardi is the Director of Library Services at Peirce College in Philadelphia. Her short stories have appeared in Bellevue Literary Review, Mississippi Review, and Swamp Pink.
(Photo by Olga Kononenko)