Wednesday, March 22, 2017

shorir amar, shiddhanto amar (my body, my decision)

it has been painfully difficult for me to write, a complete shutdown of my fingers, even thoughts. the feeling is hard to capture in words, but in short, i feel a mixture of sadness and anxiety when this happens. i wish i exercised better writing practices. maybe it's procrastination, i don't know. maybe i should set deadlines on myself, i don't know. maybe i don't actually want to write, i don't know. some days i make up my mind about writing, i tell myself it's okay to write a single sentence, one that doesn't have to be the perfect sentence. but i'm a sucker for perfect sentences.

i'm in an uber after an early evening of rain. i missed the rain, but from inside watched the city go from hues of grey to sunlight while honoring the life of feminist, social justice warrior and naripokkho volunteer and leader nasreen huq, whose death anniversary is on April 24th. naripokkho members host an annual get together to remember the woman whose brilliance shaped the organization and its supporters for 20 years, whose brilliance continues to play a pivotal role today in understanding and implementing women's right to choice, women's right to justice in bangladesh. she coined the slogan shorir amar, shiddhanto amar (my body, my decision). i'm mostly silent during this planning meeting, silently observing the six other women with me. their facial gestures, body language, and "i remember when" memories are unlike any other affirmation sessions i've sat through. it's romantic, their unconditional love is so tender and so sisterly. here and there the rain pours louder and we are interrupted. i can't help but think nasreen huq's spirit watching over us.

the rain ends just as we finish up but i decide to stay in dhanmondi to avoid the peak of a saturday traffic jam. i camp out at aarong and come out with two colorful sharees, one for myself and the other for my mother, both purchased for pohela boishakh, bengali new year.

my uber driver asks if i can help him get to banani as he's still new to uber, still new to dhaka. i share, that like him, i'm also new here. he's from bogra, newly married, and missing both bogra and his wife. he can't get himself to want to stay in dhaka. i contemplate on this and feel similarly; that i too can't get myself to stay in dhaka, that even while in dhaka, i'm reminded of brooklyn in delicate ways. getting to know who's driving me home is one of those subtleties. uber taxi has helped me navigate dhaka independently, though CNGs have also. while the costs can add up for both, my budget for living with Lupus includes transportation (read: car service). it's not always that i can ride on a crowded bus or train, especially when it's standing only, given the ongoing aches in my legs and residual reminders that i've two hip implants. if i were in nyc, i would have happily deleted the app given uber's shameful political stance in the US post-Trump Muslim Ban 1.0 while unionized cabs were on strike at JFK airpoirt. in dhaka, uber's all i've got in terms of safety, accessibility, and easy.

the following tuesday at naripokkho is hard to sit through. we are discussing the rape of three young girls (ages 3-4) in mirpur's kalshi bihari camp, one of the largest camps of urdu speaking bihari ethnic minorities in bangladesh. the identified rapist is of bangladeshi descent alongside the three girls. the rapist and his confidantes have fled from the slum and the community has destroyed their shop and home, a model punishment given that the cops delayed giving directions for immediate medical treatment, a rape kit and instead accused the parents for concocting a tale and potentially wanting to make quick money through a court appeal. from brooklyn to dhaka, young girls are denied their truths and traumas.

tuesdays at naripokkho. dhanmondi, dhaka

i arrived to the tuesday meeting early craving fresh fruit juice. i walk around dhanmondi hopelessly and am unable to spot any juice vendors. i instead stop for 10 taka chola boot, one of my favorite foods all throughout the year, not just during ramadan. new york should have a chola booter truck, has anyone done this yet? i ask for extra lime juice and kacha morich; i may have to start carrying an emergency pouch of green chili peppers with me. eating chola boot reminds me of my mother's version with potato mash, not chunks. she uses potato chunks for chicken curry, the best i've ever had, also on the list of ammu's dishes i miss from brooklyn. i miss ma's ranna and ma's ghor.

আখের রস // sugarcane juice. banani, dhaka

i am planning my return to brooklyn in may, with a trip to india and malaysia scheduled in april. the malaysia tour is for the gender and tech institute, an all expenses paid for digital security training forum for activists and rights defenders in asia. i was almost planning to stay in dhaka for three years following an offer at an international feminist human rights organization in the global south. three years, i offered one year but to no avail, is a hard commitment and that too in a place still unfamiliar to me. maybe later, not now.

at last, i am writing again.

(friends: i post more frequently on instagram, @sha.banana; write to me with your questions/thoughts about my solo travel. it'll help me to write!)

Thursday, January 5, 2017

in dhaka

it's been three months in dhaka; i'm enjoying the slow pace non-work work but know that i wouldn't be able to permanently relocate here. well, that's how it feels for now. brooklyn is home; the bangladeshi diaspora is my community and where my drive flourishes.

i am grateful for my parents' willingness to go with my flow. it was my mother who bathed me when all i was allowed in the ICU (intensive care unit) were sponge baths; it was my father who succumbed to my craving of dollar menu cheeseburgers from McDonald's when i was bedridden, on a no-sodium diet. (by the way doc, eating them didn't kill me. yep, had more than one). their contributions and care as parents to a chronically ill older child, the eldest in my family, is above and beyond. well, they both still question my motives for this trip and what i can't express in voice, i text them. ammu on one call had asked me to return home because to her what i was doing was a waste of time and strongly pushed that now is my time to earn, monetary earning that is. she had me thinking. is what i'm doing, my choice to explore beyond brooklyn, a waste of time? there were tears and anxiety again about my decision to quit my job, transition out of various community extracurriculars, and leave my place and community of most comfort; it was a gutting demand. i later texted her explaining how important it is for me to stay in bangladesh and the need to live my passions, even if that means no persistent income in the meantime. "okay i love you my baby, you know why i worry about you. don't think so much, feel better," she responded. my father and i don't talk often (though i send him text messages in bangla) but ammu shared that he often brags to his friends about my trip, specifying that i'm an activist centering the bangla language in my work with the community. this is a proud moment for me.

my father, featuring my vision board.
since my last post, my worries about money and unemployment have dissipated a bit. i have skills, i can write and write damn well (i saved money for this trip but am also grant writing for my community; write to me if you need grant writing support!), and my community is supportive. what's there to worry about? alhamdulillah for the bounty of wealth from love and intellectual earning.

i'm supporting the work of naripokkho, one of the oldest women's movement and rights organization in bangladesh. while i've connected with other women-led, women/femme-centered activist groups to learn from and about their organizing and membership retention among other organizational foundations, naripokkho's leadership structure and grassroots advocacy stood out most. i was also interested to learn from the wisdom of older Bangladeshi feminist women whose leadership emerged during and before Bangladesh's language movement and liberation war. many of naripokkho's members have been in the organization since its birth in 1983, that makes 34 years! 34 years of belonging to a movement. this is goals. secondly, each woman member at some point has been voted in to lead the group as a shobhanetri (woman president/chairperson) for a two-year term; this leadership rotates and after term completion, she is no longer in the running, an intentional participatory and democratic strategy to build the leadership of members. thirdly, they've a weekly evening meeting every tuesday, also an unchanged component from 1983. these meetings are where the staff and members collectively receive and share updates, edit flyers and other event logistics, write and release statements on current issues (example: Bangladesh's stance on Rohingya refuge and a focus on the treatment of Rohingya women). i am learning many humbling lessons in organizing and centering the collective, not the individual; decision-making through principle, not majority.

Naripokkho member Rina Roy with torch at a
demonstration to eliminate violence against women.
i'm appreciative of founding member and older movement sisters like Shireen Huq who've graciously invited me into the naripokkho space without suspicion and continue to encourage blooming feminists. i'm also appreciative of all the sisters who encouraged my move, who instilled courage and curiosity in me; yes, i'm traveling alone, without a chaperone and connecting with organizations, women, and places as i would in new york. this is kinda like the study abroad program i never did while in undergrad or a gap year; it is not facilitated or partnered and currently, no return ticket.

on my fight from dubai, mostly accompanied by bangladeshi men migrant workers from the middle east, the two men seated next to me, strangers to each other, shared their traumas tied to returning to bangladesh, "bangladesh julum'er desh, keo bhalo na! bangladesh is an oppressive/violent place, no one is well-intentioned," all while admitting that they'd never be able to disown their desh/country. patriotic maybe, but with a sincere love for home. i carry their quote on julum/violence as i travel the desh and unpack the traumas i've escaped, with little healing, to get here.

Chitol pitha omelette.
Follow my food diary on Instagram: sha.banana

Friday, December 2, 2016

not in brooklyn

i left Brooklyn, my home. my mother tells me she misses me more tonight because there's freshly made shutkir bhorta (bhorta = mashed, shutki = dried fish) in the house. to me, spicy, the kind where your mouth, nose, eyes are watering, shutkir bhorta, paired with white rice, though the last time i had it in Brooklyn was with quinoa (would not recommend this pairing), is the centerpiece of Bangladeshi cuisine. it is care, comfort, and contentment, and crying depending on the jhal temperature. bhorta in the house means Monowara Auntie is over after Isha prayer. her visits are routine, and has been for 25 some odd years. we cook, eat, and clean together. that's Brooklyn, my home.

my mother.
that her name is Monowara is something i learned before my trip to Bangladesh. sometimes we'd call her Progoti Auntie- Progoti after her family-owned grocery store on the strip of McDonald Avenue in Little Bangladesh, Kensington, Brooklyn. Progoti for progress; the American Dream. other times, she's Dorji Auntie, in honor of her husband's line of work in Bangladesh. he was a tailor. when i think of Brooklyn, sweet shutki wafts in the air, i see Monowara Auntie's oiled hair, gold rings and studs clenched in droopy ears with no room left for new piercings, i imagine my mother in 1990 at 18 styling her short curly bob, just arrived to Kensington, her linguistic finesse switching between tongue twisting Bangla dialects, and atiteyata, that Brooklyn Bangladeshi hospitality, which cannot be replicated.

i left Brooklyn. there was an urgency in me to leave because i'm in remission, though at the same time not quite in absolute remission. semi-remission means that when i'm sick, i'm able to independently manage my care without a visit to my rheumatologist or the Emergency Room. joint aches persist and there's escalation in Avascular Necrosis (bone deterioration) in my shoulder joints, but i'm bearing the pain until i absolutely cannot. i'm bearing the pain because i'm not prepared for hospitalization, surgery, months of recovery, inactivity.

there was an urgency in me to travel before another full-on lupus flare or the next joint replacement surgery, which wouldn't allow me to travel solo or travel at all (review: both of my hips are replaced, next in line are my knees and shoulders. my knees are currently injected with orthovisc, the last treatment option before surgery).

there was an urgency to leave because i'm tired, emotionally exhausted, and physically cannot meet the demands of a full-time commuter job/career right now...or ever. there was an urgency to leave because i need to reboot, i need to think about my life goals, incorporating how i will survive the next five years with lupus as i age, grow more limited in mobility, and feel the pressures of capitalism and not being able to maintain a job unless i run something on my own terms and accommodations.

there was an urgency to feed my creativity and the academic in me. i was decided on learning to read and write Bangla to strengthen my organizing skills beyond the nyc bubble and the "nyc left" that i don't wanna fuck with right now. there was an urgency to meet other Bangladeshi women and grassroots organizers and social justice leaders.

i quit my job after much hesitation and was fraught with the fears tied to unemployment and disability: how many months can i survive without a paid job? how much money do i have to save up to live in bangladesh for up to a year without needing to be employed? how do i save money in nyc? will i have adequate medical care in bangladesh? how many months of bulk medications will my insurance approve? will i be okay without the care of my parents? is this a good decision? what happens when i return to Brooklyn? how will i hold a job with the accommodations i need?

i am depressed as fuck, high on anxiety, stumbling in speech. i needed to stop everything and disappear to a place no one knows me. my creativity was diminishing, yet i was still imagining what to create despite the constant lethargy and apathy because it is not in me to survive without creating. i was losing patience, passion. i can't recall the beginning of this funk, but i could not stay in Brooklyn. why am i overtaken with deep sadness, resentfulness, unhappy thoughts?

it's 5:28am in Dhaka and i'm kept awake because of a big cockroach. the room was not lit, i could only hear the sound of crumbling paper, coming from my bag of mixed berry Ricola cough drops. there's no one but me in this room so who else is in here? i flash the light on my phone and wake wide eyed to a bright pink Ricola bag and a massive cockroach. i jump, i'm awake, i'm writing. and it seems, i've gotten out of my funk. oddly, Netflix's Chef's Table has also supported me in the healing. the chefs highlighted, though their passions center gastronomy, reaffirm and remind me that i've got this busy mind conjuring ideas envisioning ways for supportive and just communities and strategies to see them actualized. i cannot lose hope. i cannot compare. i will live in my own pace. my work style may be unconventional, but i will continue to create.

i yearn to dream, dreams of how i can live passionately as a cripple struggling to sit where the pavement meets earth or while tying my hair in a ponytail because my shoulders lock and crack in pain. i yearn to dream feminist dreams of fat, disabled bodies loved tenderly and with care in homes and outdoors, where medical accommodations are not understood as accommodations, just a way of life. i dream of traveling without the burden of monies to see more than Brooklyn for fantasies and feet touching these places where my prosthetic hips swing in curiosity and joy. Monowara Auntie and my mother, and all my sisters, blood and beyond, will be with me. and hopefully, there'll be platters of assorted bhorta.

assorted bhorta.
*more writing to come on my Dhaka adventures. stay tuned. for pictures, follow me on IG: sha.banana, FB: Shahana Hanif

RIP nanu

Saturday, November 12, 2016

আমি লিখে যাব // i will continue to write

it is a dream to be living in my motherland learning the art that is the bangla language. i decided against a classroom or school setting and have been working one on one in the comfort of my cousin's dining room with my bangla teacher david halder.

i want to celebrate having learned to read and write in basic bangla (completed around 10 hours of lessons with more to go) by sharing a poem on lupus. this piece started as a haiku, my go-to poetic genre because it's quick and short with its 5-7-5 syllable structure but also thinking-intensive in that, for it to provoke the reader, the words have to be written thoughtfully.

learning to read and write in bangla is political and personal to me. i write and organize to heal but all of my content is unavailable to my parents and other bangla-fluent people in my life who are limited english proficient. i want to and will create more work in bangla on disability and illness for this narrative to be out there and for my parents to read what i may not be able to communicate in plain conversation. #DisabilityJustice #LanguageJustice #BabySteps (ps: I am so proud of myself. i've added transliteration and translation, but as usual, it reads better in bangla).

আট বছর আগে (aat bochor agey)
আমার শরীরে লুপাস (এটি একটি রোগ) (amar shorire lupus) (eti ekti rog)
ধরা পড়েছে | (dhora pore)

অনেক কঠিন দিন (onek kothin din)
পার করেছি এবং এখনো করছি (par korechi ebong ekhono korchi)
এই অসুখ নিয়ে | (ei oshuk niye)

ঔষধ খাই আমি (oshud khai ami)
প্রতিদিন দুই বেলা করে, (protidin dui bela kore)
চিরকাল খেয়ে যেতে হবে | (chirokaal kheye jete hobe)

আমাদের সমাজ চায় (amader shomaj chai)
শরীরের এই অক্ষমতা (shorirer ei akhomota)
চেপে ধরে রাখতে (chepe dhore rakhte)

কিন্তু, আমি চুপ থাকতে চাই না! (kintu, ami chup thakte chai na!)
সমাজ বদলানোর জন্যে (shomaj bodlanor jonno)
আমি লিখে যাব (ami likhe jabo)
এবং বলবো (ebong bolbo)
eight years ago I was diagnosed with lupus (this is a disease/illness).
i survived and continue to survive the challenges of having this illness.
i take medicines twice daily, which i'll be consuming for the rest of my life.
our society overlooks and does not speak about disabilities of the body
but, i will not stay quiet! to transform our communities, i will continue to write and speak

Saturday, September 17, 2016

2001: 15 years later

15 years ago, a 5th grader me was curious and clueless seeing classmates picked up from school. My sister and I, too, were eventually picked up. School was only two blocks away, but Abbu picked us up in his beat-up 90s Ford Explorer, which he refused to get rid of because it was his first car. We were home early to a quiet uncertainty and a useless television. The public access channels were blurred; shades of rainbow and gray filled the dimensions of the screen. Soon after, we purchased a cable bundle. Abbu switched between CNN and Fox while Ammu between her Indian dramas; and when they weren’t around, I was hooked to MTV’s trash reality shows like “Real World”. 2001 was also the year of Bollywood, ending the panic year with Karan Johar’s Kabhi Khushi Kabhi Gham, which we watched in bootleg.

Debris filled our backyard. My sister and I collected scrap papers that had traveled to our home and made a game putting together missing pieces of documents. These remains were enough to remind me we are alive but our survival to come would be tested. Osama Bin Laden, Al-Qaeda, Taliban, Afghanistan, these words droned above us now and all Muslims in America and all who resembled the caramel and brownness of our complexions, speaking in tongues not English, would have to pay.

5th grader me wasn’t naïve or too young to know Muslims are in danger. I couldn’t hide Muslim if I wanted to; I couldn’t just switch from a salwar to jeans and be more American; flashing an American flag from our first floor windows didn’t make me more American. Born in Brooklyn didn’t make me more American. Nothing I do could change the way violence incited systemically, entrapping and criminalizing Muslim communities.

5th grader me was in a flower printed hijab, styled with a georgette salwar kameez; this was my masjid outfit. My sister and I spent our childhood in Kensington, Brooklyn’s Baitul Jannah Jame Masjid, always under construction, stinking of feet and basement mustiness. Among the dampness and construction debris, we had our first boy crushes, passing flirt notes between bathroom breaks. We were now the sister mentors helping newcomers with their Arabi, getting them through the rigid lessons from Kari Hujur, our Qur’an teacher. We are in Little Bangladesh, Brooklyn. For months Ammu sat on the steps to see us off as we walked the half a block distance to the masjid; her walking hand in hand with us would be too embarrassing. One day we’re called “terrorist” by a passing car. Kumkum and I are silent; fix the tops of our slipping hijab and run to the masjid. Despite it all, the masjid is our safehouse. I wonder though, what it means to the driver to call us terrorist, what it means to him about what I may be capable of, is it a fear tactic or does he fear me, does he know if my little body knows what that word even means, how my little body will hold that denomination in years to come?

My neighborhood friends and I took our hangout sessions to my basement but we weren’t playing freeze tag or hide and seek in the dingy downstairs, we were busy drafting a handwritten letter to President Bush. My cousin Zareen, the only one among us who had a computer then, helped us write cohesive thoughts and name the discomfort, our apology and that not all Muslims, and the Islamo-racist incidences we were encountering. She typed it up and mailed it to the White House. We thought he’d protect us. Or at least write back. I’m sure other Muslim American kids sent letters to him too. We’ve been writing and we’ve been writing.

15 years later, the Church-McDonald Avenues in Kensington’s streets remain crowded with Bangladeshi men in their lungis and other comfort-wear walking to and from the neighborhood’s surrounding mosques. Over the last month, we’ve buried, raged over, and honored Bangladeshi Muslims Maulana Alauddin Akonjee, Al-Furqan Jame Masjid leader Thara Uddin, and Nazma Khanam, whose lives were brutally taken. 15 years later, I am 25 having lived in a post-9/11 America with surveillance and suspicion, shielded and protective of my family, home, and community. I mourn as effortlessly as seeing off friends at their weddings, dancing and singing along to Kabhi Khushi Kabhi Gham songs, which we celebrate as our version of “old is gold,” replaying over and over almost like the memories of the fall of the World Trade Center. 

Through it all, we continue to hold each other close and love one another.

Sunday, June 19, 2016

Radhuni // Passionate Cook

The following story is a part of a longer transcript of my family history I'm interested to share and archive. This one's about my father. Glossary included in the end of the text.

In December 2015 I visited my father’s home in rural Chittagong, Bangladesh. It’s a mud house that was built almost 100 years ago, housing my Dadi & Dadu* upon their marriage and six kids, among which my father is the eldest. The mud house is mostly empty now, preserved by my youngest Chachu*, disabled and unemployed, with Chachi* and their three sons. We call Chachu Baba. Baba is a synonym for father in Bangla; I was raised to love my father’s brothers as my own father. My grandparents are dead. I had seen them once in '97 and upon return, I was forbidden to visit their grave because I’m a woman and getting too close can invoke sorcery on their souls, y’know cuz women carry magic like that. My Fufus* are in the bustling town about an hour away with their families while Mejho Baba* is in Oman.
Married. 1989.
In February of this year, my father decided to rid the mud house and replace it with a concrete duplex building. 
During my four-night stay in the mud house, I had not been stung by a single mosquito. I was their meal-time favorite especially in Chittagong’s town or Dhaka’s city concrete homes and in the open. Waking to the fog and incense of mosquito coil or spray became routine. The mosquito net was secure but it meant no bathroom breaks or learning to slip out of the bed in snake-like dance.  

The air temperature inside the mud house is cool and remains that way year round. I also achieved plugging out  technology free in the home, the millennial’s dream. There was no reception indoors and if I needed to call or check Facebook, I had to step out and away from the house and be near the khejoor gaach, date tree, and the pond it sits near or the roof, also a walk, that sits above a brick-made kachari ghor, a sort of village living room. My only issue was the outdoors squatty potty. Using it took preparation. Given my Lupus hips and delicate as Cake Rusk dunked in cha joints, and inability to squat the way one would, I asked Baba to purchase a seated commode. Every time I needed to go, the entire house, now filled with village visitors, came out with one kid bringing over the commode while others acted as watch-guards. This is the most I’ve been celebrated to use the bathroom.
Dadi'r bari. Grandma's house.
But what more can I tell you about my experience in a mud house when I’ve lived within Brooklyn’s concrete walls with full bars?

While the clay roots stand strong, Baba fears the day a cyclone or monsoon wipes them out, he says the house has been difficult to care for with Bangladesh’s tumultuous weather. It was visible that since my last visit to the village in 2007, there were more concrete buildings this shows wealth. Villagers who left to earn for their families, send funds so they too can return to their birth homes. These funds have built concrete homes, remodeled like the ones the wealthy in bidesh, the foreign, own and live in. Baba also dreams of slabs of concrete and for years has pushed his brother, my father, to cement a home with the American dollar, bills that blossom in trees rooted in tough soil.

My father was one of the first in his village to leave for bidesh. He was a ship worker and jumped when it made way into NYC. He stayed. The year is 1980 and he’s 22. At 24 he falls from a ladder fracturing his talus while on the job. A nail sits on his right ankle. He probably spoke no English then while navigating the medics at Kings County Hospital for surgery, though his English now is still kacha*. He worked as a restaurant worker, construction worker, construction boss, moving into selling and buying homes in Brooklyn, owning a Bright White Cleaners laundromat in Bay Ridge years ago, and Little Bangladesh Restaurant in the neighborhood, now rented out as Radhuni, which means passionate cook in Bangla, which metaphorically describes the NYC Bangladeshi men whose journeys mirror his. 

His visit to Chittagong in January 2016 was close to 30 years later. For 30 years he did not visit his home.
Unmarried. Year unknown.
I’m not sure if these 30 years were his rebel years. But his stories of migration and making home, most of which I’ve gathered from my mother over the years and his cousins during my trip because ours is a relationship with the eyes, show that leaving or escaping home, making home, and returning home is messy. Maybe I’ll never learn from him the missing pieces of leaving his village Fawthikchari, building a home in Brooklyn, returning to his birth home after 30 years, and now rebuilding that to mirror our Brooklyn home. It makes me think if I too can make homes outside of the one that raised me.

Glossary (all words in Bangla):
-Dadi & Dadu: grandmother; grandfather (father’s side)
-Chachu: uncle (father’s side)
-Chachi: Chachu's wife
-Mejho Baba: middle father (this sounds funny in English; he’s my father's middle brother and we acknowledge that)
-Kacha: unripe

Sunday, April 17, 2016

Lupus on the Seventh Day

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.