Surabhi Katyal
I pinched my nose as I crossed the university dining hall. I am sure that to others the food may have smelled scrumptious. For me though, it just made me gag. I walked faster. I could have stepped outside and completely skipped the dining hall but that would have meant the combination of a harsh sun and the smog. They would have aggravated the pain. It was technically not much of a choice: the food smells meant more nausea followed by more and even more pain while the sun and smog meant more pain followed by more nausea and even more pain.
I made my decisions on what part of functionality I needed in that moment. Ask any spoonie aka anyone suffering from chronic conditions and they will tell you that life is a barter between several equally bad options. I guess I must have decided to forgo the lunch. I probably did not envision keeping it down. There were signs that told me that: frequent acid reflux, eyes burning more than usual, hands and feet getting icy cold and clammy, the senses going into overdrive. Everything was more pronounced, noises were louder, sharper, any light or sun was piercing and flashing too much, my sense of smell went into an overdrive and any mild smell could spew a little vomit in mouth.
So, the din and joyful sounds of the dining hall were a cacophony, the excellent lighting was a nightmare, and all the food…. Yeah, I could already feel my vision blurring and easing.
Somehow, I made it to the dorm, rested my back against the mirror-like elevator wall. The blasting cool air of the AC helped. But it also hurt. My body could not adapt so quickly to temperature and barometric changes, however minute. I had just swung out of a freezing classroom to a hot sun to an okayish dining hall to hot sun to cool dorms. Not so great. But as I said, a barter amongst equally bad options.
My body was protesting and groaning. I was 18 years old and my body cricked like I was decades older. I entered my dark room, threw my bag on the already loaded chair and desk, switched on the AC and threw myself on the bed. I looked at the tally marks I had made on the bulletin board right over the bed. 14th day of pain. I shut my eyes as they welled up.
Tallying that number was a frequent occurrence then. But I know what I am remembering is from the third semester of the university. I recall that room vividly. It had east-facing windows but was always dark (unless A couldn’t be without sun, which was rare). It was twin-sharing with a desk, bed, and wardrobe pressed against parallel walls. Mostly, it only contained me alongside the furniture. Well, it also contained the stale smell from the wrappers of the dhaba food I had consumed in the dim lights of the lamp and dumped in the dustbin under the desk the previous night. It was the smell that had chased A away. Probably. Her attempt to stifle it with lemongrass had been thwarted. I can sympathize with A now, but lemongrass hurt my head more back then, so my scrunched-up face must have given A a cease-and-desist message. She never lit the humidifier again.
The room was on the third floor, right on one end of the L-shaped corridor, far away from lifts but closer to a staircase. It was also blissfully silent because staircases were isolated nooks when we had the luxury of elevators.
Of course, I also know that it was the third semester because it came after the summer from hell. I was basically in pain for all of it and had tallied my first fortnight-long episode.
Maybe I should clarify what an episode is, or my definition of it. An episode is when I have continuous pain in my head without a break of more than an hour, so a fortnight-long episode is 14 days of pain, from the time I opened my eyes in the morning to the time when they went into a fitful but precious slumber—the only respite from pain.
So yes, that woeful summer, I quit early from my work-from-home internship with a positive news platform, went with mum to a chauraha to throw jaggery behind me, resented my father for not seeing my pain, loved my brother a little more for trying. I understood my mother a little better but never told her that. I was angry at her too. I was angry that entire summer. At everyone. At everything.
I distinctly recall seeing 4 doctors that summer (there might have been more). One homeopath, one who was stuck on semantics, one who induced PCOD in me by not giving due warnings and information on the meds I was prescribed, and one who in his careless cruelty offhandedly told me that I was married to the pain without any recourse. The marriage was, of course, without my say, but I also had no right to complain. I still wish I could go back and punch him in the face. The others may not have helped, but at least they did not diminish me, cut off the oxygen from the little spark in me.
I entered the third semester amid a chirpy student body. I was an alien. I had only felt the imposter syndrome in the first year. This year I knew I would never belong, but I was determined to fake it. My education and brain were all that migraine had not managed to suck out of me yet, and I refused to let that last part of me go.
Be in pain all week and still go to all classes. Check.
Squeamish in the class. Go to the loo, puke, wipe that mouth, return to class, raise a hand, and answer a question. Check.
Cannot keep my eyes open but stare at the screen, trying and succeeding in getting through the assigned readings. Check.
Cannot think but will complete all assignments within deadlines. Check.
Plan a birthday party with excruciating thoughtfulness for a friend who was not eventually around. Check.
Try not to resent everything but succeed in not letting it show up. Surabhi is all smiles. Check.
The pain was constant. It started at the back of my eyes, slowly going to the backside of my head, then seeped through my neck and shoulders, and eventually, my body was soaked in fatigue. The head throbbed. It was like a ringing bell, the beats cascading to a crescendo and then slowing down in a strange aching rhythm in my head. Sharp, stinging, heavy. My eyes felt like they were always on fire. I could not stand the smells of the food, I could not eat, I could not keep what I ate down. Small lights made me flinch; the sun made me wish I was dead. A slinking back in the room at night, the gentle opening of the door seemed like an alarm clock and induced insomnia, and as my brain woke, so did the pain.
At home, I had Mum, with her slightly crackpot ideas and willingness to make something appetizing for me. There in that dark room, I was all alone.
In some sense, it was the worst semester.
Okay, maybe not, just eventful. I lost two friends, one to a duplicitous boy and one to my slight desperation for care but not getting it. He was a 19-year-old boy. I expected too much from him. My book of poems was self-published. My grandmother died, and my father dissuaded me from coming to the funeral. I also lost my phone in Chandni Chowk and had my first run-in of filing an FIR, crying and sobbing at the injustice. I met my ever-kind, very competent, and beloved mentor.
It was also the semester that I spoke out loud about my pain, going and taking accommodations from my professors, bewildered at their kindness and sympathy. Also, wilfully disproving my mother, who was of the mind that the only solution they would suggest for someone so ill would be to go home.
The time I am thinking of was the likely approaching winter. As mentioned, Sonipat smog—what my peers had dubbed the air pollution at the university near the NCR–Haryana Border—had made its entry into life. Pain loved that weather because it thrived. I, not so much.
I believe it was not quite November. I think that is when my poetry book came out, and while I do not think of it as an accomplishment now, it was at least a slight dopamine kick then. The pain had had to relent.
So yes, it was not quite November. I had already suffered through multiple fortnight-long migraine episodes that half of the semester, and I was tired. As the stuck-on-semantics doctor (un)helpfully pointed out over a call, they were not migraines but mixed headaches, a weird amalgamation of migraines and tension headaches. Well, it does not seem unseemly that I would experience stress after recurrent migraine episodes, jam-packed together for the past few months, so yes, thank you, doc, for the helpful factoid, but no solution.
Despite the accommodations, the impairment remained. The pain was still debilitating. The smog was not helping. I was feeling that no one cared or listened to me or looked at my pain except my brother, and he was not doing what I wanted him to do: storming the university and saving me. (Yes, I was being massively unfair). I had two, no, one-and-a-half semesters of psychological training. So, that day I did what Mr. Obama said recently in his memoir: I tried to science the heck out of my problems.
It had been bewildering that the minute after I uttered the word migraine, long prescriptions had followed. The doctors had not listened to my extensive symptoms or how debilitating or disabling it was. There had been no assessment except expensive MRIs or tests to rule out something ‘serious’. I think now that how is daily, persistent pain not serious? I remember wishing I had something bigger, more explosive, so someone would care.
More than anything, I needed to know whether I should care or I was making it bigger than it was.
So, in a fit of desperation, I googled a migraine scale. The Migraine Disability Assessment, or MIDAS, as its name suggests, measures headaches’ impact on one’s life.
In short, it would tell me, objectively, that I was making up my distress, and my mood and stress and angst were over… over the top… over everything?
Because, indeed, I was not a bad person. And people were taking this lightly because it was not a big deal, not because they did not like me, or I did not deserve care.
I filled out the scale and checked the score. I filled it out again. I then rechecked the score. Then I did it again. And again. Four times, or maybe three only. Like I said, I was tired.
MIDAS says a total score of 21+ for its five questions qualifies as severe disability. The scale recommended to speak to your doctor if the score was over 6. My response to the first question was not very telling. I always attended school and work. I wanted to do well, whatever the cost.
But my response to the second question was close to 80. I barely had a decent day between fortnightly episodes, and the elation or shock of no pain meant there was hardly any change in routine, except maybe restful sleep or scramming more work in one day.
And this MIDAS was telling me that I was severely disabled—several, more than several times over.
I wanted to cry. I did not. I could not. Crying either induces migraines or makes them worse and I had known that the hard way. I sat there in my dark refuge, with a white screen with MIDAS displayed on it, numb and reeling.
I would never tell anybody about MIDAS and my score. I was sure the result was enough to send me home. And I did not want that.
A came back. The room was dark. She only switched on the overhead desk light. I was grateful. I was tempted to apologize. I was always tempted to apologize, but the words got stuck in the throat. What would I apologize for? And my apology would not change my or her circumstance. And maybe I did not want to apologize. A had no idea what was going on with me. No one knew the full extent of it. But I was not doing it deliberately. I think more than apology, I wanted to explain. I wanted to be heard. I wanted to be seen. I had enough shittiness going on with me, and I was as considerate as I could be. I wanted to tell her about MIDAS, tell her that I was not making it up, that I was not a bad roommate. Things were hard. Things were colossally wrong. I was spiralling. I had been lost in how to articulate any of it, even to my closest friends and family, and that would persist for years, so obviously I could not form the words to tell A. I had only understood the extent of what I was going through because MIDAS was telling it to me in numbers.
Meanwhile, A switched off the light and went wherever she went to study.
I was alone once more. Or maybe not. After all, pain had always been around.
Surabhi Katyal (she/her) is a writer, translator, psychotherapist, and researcher based in Rajasthan, India. Her work has appeared in Gulmohar Quarterly, and her short story was recently shortlisted for the Rama Mehta Writing Grant. Currently, she is translating verses of A Vennila, Sant Raidas, and Maithili Sharan Gupt. She also identifies as a spoonie because of her chronic pain and psychosocial disability, and is a fierce advocate for invisible disabilities. X: @xplodinsynapses Website: https://surabhikatyal.weebly.com/
Featured photo by RDNE Stock project (Pexels)
