Every time I want to write, it is not about the moment. It is a reflection from the past, a remembrance of the present or an undigested anxiety of the future. But is it really what I am? Yes, pain engulfs in the form of fatigue, cramps, sleepless nights, uterus that is cranky forming a human existence living with Fibromyalgia.
Its always a question of breaking the structural oppression of not talking about being ill, not asking for a leave because my reason is never substantiated when in comparison to my colleague or any colleague’s health in that matter. I am always accepted when I am well and running on my toes, organizing events and coordinating research. People start reminding us that we are the ‘other’, and do not fall in the criteria of hanging out after 10pm and doing all nighters. No one is ready to dissect my silences and smiles; forget that when then do not understand what I am saying in words!
Unprofessional, unsustainable energy, beginner not a finisher, overenthu, disappears too often — fishy. Name calling comes in different forms. I receive tips on being well every day, even if its a person I have met five minutes ago, if they notice me stretch my back or leg, they’re sure to ‘do yoga, you need to stay healthy at this age’, ‘have you tried ayurveda?’.
Is is their fault? I kept telling myself that there is no one to be blamed in situations like this. Everyone is conditioned to provide care. A mother has to feed her children four idlis on a Monday morning, father has to make sure his child has ironed her pinafore uniform the right way, grandmother has to make sure she has held her child’s hand so tight as she climbs the school-bus (sometimes making it feel as if she does not want to let go); boyfriends who have held my hands seeing me panic at my pathetic distance estimation skills on the road, dad still making sure I leave home with a bag full of home whenever I leave after a stay, mom still reminding me to drink warm water the first thing in the morning; care all of this is.
I have an ultrasound scan with two polycystic ovaries, gyne judges with the corner of her eye, and I hear ‘get married soon’ at 19; care. Hospitalized every month with ovulation-middle pain, pain crumbling me, given IV with pain killers and examinations gotten through with muscle relaxants, doctors unable to diagnose, migraines triggered and treated, wrist pausing as I type; diagnosis — its all in the head, care. At 25, I’ve become this expert at defining care, explaining in small groups and helping out people who seek help; taking baby steps in understanding what care is not. Internet and books had become my best friends and doctors not so. Reading, recording and reviving my symptoms, i’d go back to my doctor to teach them what it is I go through. Some of them are surprised with the symptoms and some remind me I am unmarried. I was never surprised how everyone promptly and pompously dismissed pain, again care.
At 26, I meet this doctor who’s eyes welled up as I shared my pain in words, she asked me if she could hug me gently. I have never ever had a gynec who even knew what fibromyalgia was till then. That moment when I was not asked if I was married, not asked to get married or not judged for my sexuality, I broke down. But her only solution was hormonal pills, diet modification, exercise and therapy. I felt grateful to have met her, but my questions of living a functional life was still unanswered.
Finding a full time job is unthinkable, and freelancing is only draining my energy having only time to do one task and being drained when almost reaching out to the second task. Unable to recharge when in the presence of people and unable to breathe when alone. Solitude to some extent gives me assurance of self care, but only to realize the burden of care.
We are all pieces from our past, sewn together with time. We break apart from people and from within ourselves into days where we live the memories and forget the faces of those in it. We cling to those letters, dried hibiscus petals, beach sand in the omr bottle, kulfi sticks saved up from late night rides, lyrics to the old songs, videos of falling leaves and smell of the midnight love. Placing ourselves in the laughter of another, recognizing that we’re laughing our sternocliedomastoids and diaphragms out, not because of the other, but because we’ve set ourselves free for the universe to find us. The laughs, these thoughts are not sustained with cramps around my ribs or triggering my nausea, laughing drains me of the energy I had stored up to spend time with friends. Everything becomes energy consuming, and realizing that has become care.
Care has evolved from finding a partner or sleeping in, they’re just a stereotypical day in my life. Care is now finding a doctor who could suggest beyond hormonal pills and therapy. Care is now deciding to take risks in loosing people who do not understand pain. Care is now about not explaining myself. Care, is hoping for a world that would see my desires as human. Care, its about making sure the other person does not misinterpret its definition. Care, it carries so much potential to pull someone apart; its a matter of being alive and not hiding.
I am happy I got to write this, especially an article on pain at Skin stories was a push to try and articulate what I have been living through. Thank you Point of View and Shreya Ila Anasuya.
