The narrative below is a creative nonfiction memoir performed at the Muslim Writers Collective + Systemic Disease's Reflections on Identity & Healthcare: Storytelling Training + Open Mic. Writing and storytelling has given me power to heal and understand Lupus's trajectory since diagnosis in 2008. I am currently excavating and traveling back to the onset and treatment to craft pieces to continue archiving Lupus memories and manifestations. The beauty of writing is the art- the stories below have been shared throughout this blog but from different gradients and genres; I'm drawn to the nuances within these memories and the stories within stories. Excavation is hard- rewriting the trauma is hard, but it is the only way I have power over my own narrative and voice. This was performed live with many tears and voice all choked up trying to not cry full on, you can watch the live stream here.
Reading time: ~9 min
Ek, Part One
On the 7th day, Dr. Barinstein came into the room rubbing her hands with sanitizer mostly gliding off her fingers. I can still smell hospital sanitizer. 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 big purple letters read Lupus Now. (Google later helped me learn that purple’s the Lupus color) Lupus??? L u p u s. I told myself the Lupus magazine wasn't for me. I had seen Lupus before. Oh yeah, Mercedes from America's Next Top Model in cycle 2 has it. Dr. Barinstein introduced herself as a Pediatric Rheumatologist from Maimonides Hospital in Brooklyn. Hmmm, is that where they’d take me next? She was soft spoken but firm, "Shahana, you have Lupus, and we're going to take care of you. These are for you to read."
She placed them on my thighs. I looked at her with brave eyes, no words exchanged, and decided that I’d cry only after she left. I exchanged thoughts to self: “Great. I'm gonna fuckin die. I'm 17 and still a virgin! Allah, this virginity thing, I’m doing this for you and also cuz a group of us at Kearney are pro-life and believe in chastity...but who will wanna have sex with me now?”
September’s cold breeze was delicate on my skin. The Coney Island hospital transporters anchored me into an ambulance for the ride to Maimonides. 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 plan the rest of my final year at Kearney. College apps were on my mind… being at an all-girls school made me wanna be at an all-women’s institution moving forward. At the moment of delivery to Maimonides, also my birth hospital, I just wanted to run out of the ambulance, wake up the next morning, get on the F Coney Island Bound to Bay Parkway, uniform skirt rolled an inch too high matched with my black Nike Air Force 1s cuz the ones the nuns paired were a fashion no-no, and continue discussing Kate Chopin’s (Show-Pan’s) The Awakening, assigned for the summer and English Lit was the only class that really mattered, and then lunch with friends hoping to add a 6th mozzarella stick to the batch that only sold 5 for too much, so I was a thief in a Catholic school. Forgive me, Father, for I have sinned.
|Post-homeschooling, back at Bishop Kearney wig-on for the Spring semester. 2009.|
We entered the Intensive Care Unit (ICU) at Maimonides, my body laid flat on a stretcher unable to take in the Brooklyn I knew with me. I was fuckin’ scared. The room was compact. One chair, a window overlooking bland building backs and rooftops I’d never visit, a sink that I could walk over to if I was unplugged from the machines but I never did get to wash my hands in that sink, and a bedside commode (my own bucket to poop in). There was a small, yellow bowl of some sort positioned on the overbed table, which I learned was a bedpan. I’m in a new Brooklyn. I have Lupus now. And there seems to be more apparatuses to poop in. I’m kind of excited and while in bed imagine all the poop stories I can share when friends visit on Friday. They’d visit every Friday after school.
I was shackled to the poorly inflated hospital bed. Colorful wires reaching out from a large machine with various zigzags and fractionated numbers were attached to my body monitoring my body’s rage.
Dui, Part Two
I didn’t feel like a woman. Suddenly, I wasn’t a woman. All of my parts molded into one. 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 was now dressed with an empty head. No longer could I gather my hair into a Kearney bun which all the Rockaway girls styled in high school. I wasn’t even from Rockaway, but my hair was thick and long like the girls that lived their. And my insides are swollen and scarred. Glassy stripes covered my arms, legs, stomach, lower back. Very zebra’esque. 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 cuz I had given up on the mirror essentials like getting dressed, playing with makeup, doing my hair; I was also wearing unflattering and loosely tied hospital robes, easy access for the docs to inspect whatever, whenever. This is all really humiliating. I don’t realize the extent of my physical changes as a result of the Steroids, several doses of Chemo, Chemo cuz it slows down the immune system, and Chemo cuz there aren’t good meds for Lupus, and other meds matched with being completely bedridden, guided the response and reaction from many visitors. “You’ve gotten really fat. If you worked out more, you wouldn’t be hospitalized. 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.” There was suspicion in their tone guided by fatphobia and a push for religiosity. These comments were also in Bangla, and it hurt deeper in the language I grew up with.
Theen, Part Three
Ammu warns me, chele’der kach thake dure thakba. Now that I’ve got this, I’ve to be careful of what I do with boys. She says in Bangla that I’ve to stay far away from them. Perhaps she’s saving me from heartbreak but I know that she knows that no boy wants to be with me.
I’m in Borough Park in a wig heaven, all brunettes and blondes. I’m looking into the mirror and all’s visible: my bald head, I’ve got moon face cuz of the steroids- almost like what a caricature artist would draw: a dramatically fatter face, chubby chipmunk cheeks, a humped back, swollen neck, and bulging eyes. I’m unable to love me like this.
|Home from the hospital and hair growth beginnings. Pic by Rezwan Noor.|
I need hair. First she sets the wig cap. Then a luscious brunette covers some of the chubby chipmunk cheeks. She says it’s 100% human hair. It also costs around $800. Ammu and I eye each other and walk out with cool.
We’re on Flatbush Avenue. I purchase my first two wigs. They’re synthetic, not more than $20 each. I care for them as my own hair. Wash every few days, attentively running my fingers through them with shampoo and then air drying. Any excessive heat will ruin the wig. I ran a straightener through one and the hair clumped together like when ironing silk on high. I continue to wear that wig sometimes with the burnt piece tucked behind my ear but it feels sad not being able to run my fingers through the strands to detangle the knots.
|My wigs on a coat rack.|
Chaar, Part Four
An older white woman visits me from the Make A Wish Foundation. This is the first I hear about them and they’re over at my house. Ammu makes cha. The white woman is accompanied by a team and they grant me one wish...cuz I’ve got a life-threatening medical condition, one wish for the terminally ill. I own these descriptors now. I’m also barely 18 and that’s the cutoff for wishes from this group. Pediatric care comes with perks, I guess. She tells me I can wish for anything, like a trip to Disney or a meet and greet with a celebrity. These don’t appeal to me. Though I do dwell a bit on the celebrity option and imagine myself with maybe Shah Rukh Khan or Rani Mukherji or Johnny Lever cuz he’s a comedian. Scratch that, this is super pathetic. My wish really is to be mobile, walk again, get on the trains, and go to college or something of that sort outside of the home, which is also a kind of an ICU right now.
I instead go on a shopping spree at Macy’s Herald Square with my own personal shopper in a stretch limo. This is also pathetic. Well, at least I got winter coats out of the splurge. I mean, I wear salwar kameez, what the heck am I even doing in Macy’s?
Pa(n)ch, Part Five
My left hip is officially one month old. Its parts are ceramic and plastic. I’m without pain and this is a new feeling. Without pain. And even while walking with Jimenez, my physical therapist, I’ve the tendency to limp because limping helped me position my body in a way that slightly dimmed 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. So 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 Converses 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.