Lupus on the Seventh Day

1.

On the 7th day, Dr Barinstein came into the room viciously rubbing her hands with sanitizer mostly splashing off her fingers. The pungent smell of hospital sanitiser still travels with me like a tacky souvenir. She had with her some magazines tucked in the fold of her left armpit. She took a seat and rested the stack of papers and magazines on her thighs. The one on top in theatrical purple letters read Lupus Now. I told myself the Lupus magazine wasn't for me. Though I knew nothing about it, I had seen Lupus at 13. Supermodel Tyra Banks' America's Next Top Model shaped my early teen years, also an era of crappy reality shows. It was Mercedes in the 2004 season who, on live television, put a face on Lupus; at 13 I felt her pains with Lupus. She was a warrior.

Dr Barinstein introduced herself as a Pediatric Rheumatologist from Maimonides Hospital in Brooklyn. Is that where they'd take me next? "Shahana, you have Lupus, and we're going to take care of you. These are for you to read." 

September's cold breeze was delicate on my skin. The Coney Island Hospital transporters anchored me into an ambulance for the ride to where I'd live for a still three months. They didn't tell me it was the last chilly air I'd feel on my skin, I guess they too thought I'd be home soon, home soon to the warmth and comfort of Little Bangladesh, the section of Brooklyn I grew up in.

During the ambulance ride to Maimonides, I just wanted to run out of the van, wake up the next morning, and revel in the anxieties of my 12th grade self. The hardest part of our day was waking up and getting to school on time. In the dim ambulance I dreamt my sister and I rushing to catch the train to Bishop Kearney High School, with our uniform skirt rolled an inch too high matched with black Nike Air Force 1s. The black Nikes were how we resisted the monotony of the Catholic school uniform and elevated our look to cool, because that's what mattered. I dreamt resuming our Literature class discussion of Kate Chopin's (Show-Pan's) The Awakening, my first feminist novel. I dreamt of lunch with friends hoping to carefully steal a 6th mozzarella stick to the batch that only sold 5 for too much.Forgive me, Father, for I have sinned.

2.

We entered the Intensive Care Unit (ICU) room at Maimonides, my body laid flat on a stretcher unable to take in the Brooklyn I knew with me. One chair, a window overlooking bland buildings and rooftops I'd never visit, a sink that I could walk over to if I was unplugged from the machines but which I never did get to use, and a bedside commode (my own bucket to poop in). There was a small, yellow bowl positioned on the overbed table, which I learned was a bedpan, also a toilet. I'm in a new Brooklyn. I have Lupus now. And there seems to be more apparatuses to poop in. I'm excited imagining all the poop stories I can share.

I was shackled to the poorly inflated hospital bed. Colourful wires reaching out from a large machine with zigzags and numbers were attached to my body monitoring its rage. 

3.

I didn't feel like a woman. The curves that took shape from my collarbones to the bump of my breasts to my soft tummy to my arched back leading to my long legs... were no longer in place. The darker than night waves of hair were now all gone. And my insides were swollen and scarred. Zebra'esque, glossy stripes covered my arms, legs, stomach, lower back. They're called striae, something that taking Prednisone does.

All this time at the ICU, I have no mirror. I don't think to ask for one because I had given up on mirror essentials like getting dressed, playing with makeup, doing my hair; I was also wearing unflattering and loosely tied hospital robes. As a result of the Prednisone, several doses of Chemotherapy, other medications, and being completely bedridden I am physically unrecognisable. My look guided the piercing comments from many visitors. “You've gotten really fat. If you worked out more, you wouldn't be sick. Are you sure the doctors are working towards a treatment, you don't look like yourself. You should pray to go back to the old you, this is a test of faith you know.” These comments were also in Bangla, and it hurt deeper in the language I grew up with.

4.

Ammu warns me, chele'der kach theke dure thakba. Now that I've got Lupus, I've to be careful of what I do with boys. She says that I have to stay away from them. She's saving me from teenage heartbreak; she's protecting me from the patriarchal rules of attraction and desire, that to be wanted, I have to be physically attractive; no boy wants to be with a sick, ugly girl.

I'm in a wig heaven, all brunettes and blacks. I'm looking into the mirror and all's visible: my bald head and because of the Prednisone I've got a dramatically fatter face, chubby chipmunk cheeks, a humped back, swollen neck, and bulging eyes. I'm unable to love me like this.

I purchase my first two wigs. They remind me of my hair.

5.

My left hip is officially one month old. Its parts are ceramic and plastic. I'm without pain and this is a new feeling. While learning to walk with Jimenez, my physical therapist, I've the tendency to limp because limping helped me position my body in a way that slightly reduced the sharp aches from a deteriorating joint. I'm on a semester leave and worry about not graduating in four years. I've a cane for support but I'm too embarrassed to step out with it. I rarely step out unless it's a doctor's appointment. I'm especially uncomfortable around boys. I just haven't seen any young and disabled couples. Maybe that's not even a thing.

My all black Converse sneakers save me during this time. But I could do away with the cane. Years later I learn, me in cane is just (as fun) as me in school uniform skirt rolled an inch too high, stealing a sixth mozzarella stick.

Shahana Hanif is a New York based non-fiction writer traveling in the motherland learning to read and write Bangla. Write to her at [email protected].