Sunday, March 6, 2016


since diagnosis, i have worked so hard to not look ugly. i am 25 now, in periodic remission, and i look fine.

periodic remission means i have days i can't get out of bed because of fatigue and joint pain, while on other days i can run on the treadmill for 20 minutes straight at 8 am. i'm learning to get used to running, can't say the same for fatigue and joint pain. it also means that i'm high functioning, that on most days, withstanding the aches and pains, i'm comfortably able to get a lot of work done. it means that when i'm sick with acute nasopharyngitis, the common cold, i am sick for days because my immune system doesn't know wtf to do. this week i was homeridden with a cold. my parents are in bangladesh, my father's visiting after ~30 years. i think brooklyn is more home to him than chittagong. i wonder if either of us will leave brooklyn. alone and sick, i'm confronting my biggest fear. i've become dependent on my parents' care while sick and in pain as a result of lupus. who will care for me the way they do? with them not home, i'm rethinking care. kabita aunty rushed over with a strawberry-pineapple-raspberry tray and chicken curry, cauliflower-okra fry. the khala who helps my mom with house-chores, who also babysits for income, massaged me with vicks, "in my day we used shorishar tel for cure."

looking fine means looking good. i'm told i look good now. i fit into mediums and not XXL, though I still peruse the racks at Forever21's plus size corner, which used to be Faith 21 in 2009, because i'm still that size in mirror. it means i have a full head of black hair, which i can comb, cut, and color. but i fear cutting my long locks because cutting means losing hair, like what happened after chemo. i've not needed chemo after the two doses of cytoxan, but that shit left me bald. and i had been bald before because my mother was obsessed with shaving our heads, mine and Sabia's. she'd rub an egg yolk concoction, some kind of a magic potion anticipating thick strands, the thickest as possible. except this time, it wasn't my mom, it was chemo, and at the time of losing it all, i didn't think it'd ever grow back. loose hairs swam in the bathtub. they frosted the pillows on my bed. they clung tight to the bristles of my hairbrush. so i avoided showering, sleeping, and stroking whatever was left of my hairs. but i lost it all anyways. i wore wigs to not expose the truth. hair is important. i wasn't taught to love a bald head on a woman. what i have on my head is rebirth hair and it's impossible to guess there is lupus. i have worked so hard to not look ugly.

it's true, my smile and laugh are the same. what's changed on my face is that it's smaller now, with just a little double chin. that double chin is me, even before lupus. sometimes my face is fuller when i sleep less than 6 hours or don't drink 2 liters of water. prednisone gave me a moon face. i hated it. day after day I Googled 'weight loss with prednisone' or 'get rid of prednisone double chin'. i'd play around with the dose because i read that a smaller pill would help melt the humped back, chin, and neck fat. a smaller dose would also slow down joint breakage, and i needed this because i didn't want to limp. i had to walk a walk that was without uneven steps and buckles. my ex at the time visited once and dumped me, so i knew i couldn't be fat, and i definitely couldn't be fat and sick and immobile. i've learned that to be desired, i couldn't be any of those, at least not at 17 or maybe not ever. it is in bangla that i also learned that i would be loved wholly if i'm thin, thinner than thin because even at thin, it's not enough.

i wonder if there'll be a time when i stop working so hard to not look ugly.

homecoming: i am writing again and practicing honesty.

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