“I often feel like Anne Hathaway’s character from Modern Love, you know. You wake up and it’s the day you find yourself falling in love with peaches and a happy man, and then there are days you don’t want to get out of bed.”
On one of my ‘good days’, I recently found myself saying this to a friend who, on a side note, also suffers from an auto-immune illness and gets me when I talk about my ‘good MS days’ and ‘bad MS days’. There have been a lot of ‘terrible MS days’ too, but I am too proud to call them so.
So, going back to Anne, much like her character Lexi from Modern Love (otherwise based on American Entertainment lawyer Terri Cheney’s 2008 essay ‘Take Me As I Am, Whoever I Am’), some days, I wake up feeling so sprightly, so shimmery, and so beautiful— I could jump out of the bed at 6 am, wrap up a sweaty workout and shower it off with my sweet-smelling body shampoo, stir up a piping-hot or super-crunchy breakfast with apples and croissants and oats and oh, my favourite, filter coffee. I could be ready with my signature eye-makeup, a dab of Benetint, and a nice pinkish-nude lipstick, sitting at my desk, ready to kill the extra commas, fix the double hyphens (or what I call the ‘losers’ em-rule’), and write a story that might make people smile or cry, or earn a few claps from my lovely boss!
On other days, I wake up to an 11 am text from my colleague, “meeting at 11.30?”, and realise that my eyes are refusing my pleas to open up. I try to get up but sink back down. I look towards my left, only to watch the room spin before my eyes. I sink further. I feel tired, so tired. I bury myself inside the blanket, and I know that it’s a ‘bad MS day’.
About four years ago, I was on a mini-vacation with my family at Shantiniketan. Right in the middle of the solitude-centre of the country, one of my eyes started seeing differently. We decided to consult an ophthalmologist first, but it turned out that my eyes were actually perfectly alright.
“6/6”, the doctor said as he redirected me to the local neurologist.
My Ranchi neurologist knew at first glance that it was an auto-immune illness. He warned that if I wanted not to worsen it, I should be going off to a bigger city—Delhi or Bangalore.
NIMHANS, Bangalore and the very kind Dr AB Taly declared that it was indeed Relapsing-Remitting Multiple Sclerosis. In fact, my symptoms were the text-book description of the condition. One to always have taken her academic commitments extremely seriously, my first reaction was, “No, this can’t be happening! If I fall ill now, how will I complete my two research projects, three upcoming assignment papers, and a pending semester towards my graduation?! What will happen to WDC?” (I was the General Secretary of Miranda House’s Women’s Development Cell.)
It’s almost funny how all of that somehow mattered more at the moment than my life and my family. Since that was a flair-up, I had to be injected with steroids for five days. While I slept away my days with an IV tube up my left and right arm on alternate days (my veins get blocked easily, apparently!), my dear Ma kept praying and chanting and Papa kept doing the rounds of various departments and clinics to get the bills and test-results out.
Life goes on.
I returned to Delhi with a swollen face and lots of water-weight (thank you, steroids!) and a new skill that I was supposed to master—injecting myself every weekend with a beta-interferon injection. About a week into this, I was sitting on the toilet and reading my book (like everyone does, or not). I didn’t realise when both my feet went numb sitting there. I ignored the numbness thinking that it will all get better once I am up on my feet. Instead, the moment I tried to stand up, I fell flat on my face. That was the first time that it hit me that I had something—that I was not my ‘normal’ self anymore.
I still kept holding up. I gradually started accepting that I had something that was going to be with me for a long time. I kept telling myself that I had to move along with it. All of the support that I received from college, thanks to my dear professors and friends, was enough to take my mind off of the illness.
One morning, I woke up to my sister’s phone call.
“I know it’s already difficult for you. Please don’t let it affect you. Munni Bua passed away this morning.” Munni Bua, who used to sing ‘Maai Ni Maai’ for us as we danced our hearts out, was no more. She was gone at 55!
Munni Bua’s death was followed by the news of my best friend’s mother’s death. I had met her the previous year. I called Ishan and cried at our luck. At 2016. In fact,caught in the middle of a pandemic in 2020, I can still say that 2016, and not 2020, was the toughest year of my life.
I was still trying to hold up.
A few evenings later, my phone started buzzing with a lot of messages. I had been added to a WhatsApp group by my school friends.
“Nishi is no more. She hung herself.”
Nishi, our school friend, was always the brightest and the kindest person in the room. Her death was probably the final nail. I didn’t know what to do. I stepped out randomly. No money, no phone. Thankfully, my friend, Tridisha lived closed by. As I arrived at her door, something burst open and I couldn’t stop crying.
Tridisha took me in and calmed me down. Now that I look back, had Tridisha not been there for me that night, I probably would not have been alive to write this today.
Dr Bijayalaxmi Nanda, my forever supporter and ally, who had been a patient of a similar auto-immune illness, advised me to go back to my childhood books and only do what made me happy. I started reading Roald Dahl and Ruskin Bond again. I blocked thoughts that took me back to Nishi’s death. I blocked everything that could have potentially bothered me. Tridisha taught me how to inject myself and I got my hair coloured red. At a time when I hated looking at myself in the mirror because of my swollen face and random people’s comments about my weight gain, Tridisha, Qwingkl (another friend) and my gorgeous red hair came to my rescue. The journey of trying ridiculously hard to keep myself happy continues to date. I know that I have several flaws and I have embarrassed myself a little more than a hundred times in front of different people, and have even upset some of them, but honestly, had I not switched my mode to ‘ridiculously in love with myself’, I probably wouldn’t have survived.
Michelle Obama, while promoting her book Becoming (2018) warned against becoming just a stat, a number. 2018 was also the year I finally began to move towards becoming myself. July, 2018, I was back home in Ranchi after having obtained a First class with Distinction from one of the oldest universities in the world. Earlier that month, I had been on a solo trip to Dublin, had been accepted by Oxford, Cambridge, and SOAS to pursue a PhD, and I had sent off a paper on women and social movements for publication. At that point, I was eagerly waiting for the PhD scholarship to arrive. I was so sure I had everything. What I didn’t realise then was the fact that I was in fact, completely broken.
Back at Cambridge, newly diagnosed with a life-changing illness, away from my family, injecting Interferons every Friday night, that knocked me out for the entire weekend, and losing balance upon falling every other day—I was suffering. Yet, I tried. I took up the charge to represent my department at the HSPS student council. Attending lectures, workshops (even the most obscure ones!), making friends, contacts, going out for FLY (Cambridge’s BME feminist cell) meetings, standing at the picket lines with my teachers, making posters and protesting against ultra-right-wing actions in India, dancing at bops in my silk saree and boots— I was doing it all, and yet, I was breaking down further and further every day. I refused to wear comfortable shoes because I wanted to look and feel healthy and beautiful (my idea of beauty is not that skewed anymore. Thank you, Naomi Wolf!) I was trying so desperately hard to feel and appear confident and smart that I just ended up damaging my confidence and self-esteem in the process.
My last fall from Selwyn College’s staircase was so drastic that instead of looking for job opportunities there or making the best of my remaining Visa allowance, I decided to leave everything and come back home. With my heightened anxiety and depression, however, my family met a completely different person.
A few days back when my mother told me that I should have taken the Indian civil services exam in 2018, I realised that I was not even functioning properly at that point. Not giving myself space after my diagnosis had left me with a lot of mental health issues. I was popping antidepressants and was only thinking about obtaining validation — all the while actually feeling pretty bad about myself. My self-esteem was truly down in the deepest of gutters and that’s why I wanted the world to pity me and treat me differently. In my head, I was a brave conqueror who deserved all the attention in the world because she was ‘braving’ MS. I wasn’t. In reality, throughout 2017 and 2018, I was just being a presumptuous ignoramus! I thought I could do away with my basic values of kindness and honesty just because I was suffering, whereas, I should have probably held on to those more tightly.
I truly cannot thank my family and friends enough for loving me despite all of this.
2019 grounded me. I started journaling my thoughts and feelings to identify my patterns. Regular exercise and being more open to kindness and opportunities of different kinds, and more than anything, stopping the continual pity-party in my head, greatly helped me become more of my real self. Of course, living with the illness for about three years also brought me home to me.
In the same book, Obama, who talks about her father’s struggles with MS, says, “It’s all a process, steps along a path. Becoming requires equal parts patience and rigour. Becoming is never giving up on the idea that there’s more growing to be done.”
Starting therapy earlier this year made me realise that much more than my ‘doing’, I am simply worthy in my ‘being’. I slip and fall less often these days and almost four years into it, I know when it’s time to hold on to something and get up when my feet go numb. I now know what to do when my calves tighten up because of walking too much, and I have finally started wearing trainers that help me fall less often.
It’s not like my self-esteem issues or confidence issues have vanished completely, but, at this point, I am far more at peace and love with myself than I have ever been—even more than when I thought I was blocking out everything to ‘keep myself happy’. I tell my friends and family that a lot of values don’t come to me naturally, but day after day, with a lot of awareness and love, I am building myself. I am on my way and I am ‘becoming’ more and more of me — one day at a time.
Multiple sclerosis is a chronic, unpredictable disease of the central nervous system (CNS), which is made up of the brain, spinal cord and optic nerves. It is thought to be an immune-mediated disorder, in which the immune system incorrectly attacks healthy tissue in the CNS. Most people are diagnosed between the ages of 20 and 50, although individuals as young as 2 and as old as 75 have developed it. So far, there is no established cure for MS, but it has been found to be modified by disease modifying drugs and therapies. Since the condition is not common in India, treatment is very expensive and there’s minimal governmental support.
Organisations like the Multiple Sclerosis Society of India (MSSI) work for the welfare of people affected by Multiple Sclerosis. There is a need for greater awareness and support. You can reach out to the MSSI to extend a helping hand here.
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