I couldn’t get out of bed today, which is nothing new. I just couldn’t lift my neck from the pillow. I felt like I’d had a concussion. Electric sparks run up my spine. I can’t feel the tremors today. But when you are in the presence of others, you feel you must perform. So I do it, for the sake of my parents. Then perhaps every day has been a performance. For my sister who comes to visit with her two boys; for a phone call with my photo book editor in Georgia; For the dogwalker… I have become so reliant on these little happenings to pretend I feel okay that I have begun to dread the quiet days when I can no longer hide in lies and when it is perfectly alright for me to sleep in. I cannot stand those days. Soon, when all the world becomes a safer place, I will move to New York where there is no family and no help and then I will have to make up new lies every day as I go about chores.
I have, over the years, learnt to live off the championing positivism that comes out of my mother’s mouth. Not only because she nursed me back to health, but also because she has a way of living in a plain world where everything has answers and solutions and everything makes sense. Because somewhere out there, is the next morning, when I will once again wake up and realize I am not myself yet and may never be. Till then, I keep pretending in my mother’s world.
Off-late, I have to keep repeating to myself: you are not in New York, you are not playing tennis. You are here. My mother has used the word ‘othorbo’ which, in English means ‘cripple’. She calls the choppy way I walk the ‘Geisha walk’. All this would’ve been amusing had it not really been happening in slow motion over the years, this turning into a vegetable in front of your own eyes.
I look at the dark, polish of the antique headstand of the bed I am lying on as I think this. The carved wreath like Ceasar’s crown in its center. This was my sister’s bed when we were growing up. My vision is shaky. I’m not fully sure where I am. When you are in mourning, these little details fill the various compartments of time.
***
Ever since I moved to New Delhi, in 2013, I have been suffering from something, a 'condition' which no one could diagnose. It consisted mainly of tremors in the hands, legs, extreme exhaustion and went on to black outs and fainting. The exhaustion was so bad, I could lie in bed for weeks and not know a day has gone by.\
Over the. years, I have hidden this from everyone, or rather, never discussed openly. The doctors in India dismissed this as a result of anxiety; my sister would tell the world I had a nervous breakdown. I realize now that was just her way of understanding things as she has little understanding of the mechanics of the body. Last year, I finally. had enough strength to spend much of the year in NY and see specialists who say my symptoms are similar to MS or Parkinsons. It's neither of them and I will not die. But we share very common symptoms. Such as, it is my left side that has been affected, I have no balance and fall over when I try to walk
The last seven years I have proudly hidden as much of this as I could from friends and acquaintances. I would rest all day to put on a spectacular appearance at night. I went to family weddings and parties. I did no work because I knew somewhere deep down the 'real' me wasn't working and if I tried to use my body the way it was really meant. to, I would collapse.
I. have been wanting to write about this for a long time now but in my time in Delhi I wrote not a single word.
Few weeks ago, I had another collapse and I snapped. I realized that. if I was going to have to live with this condition, the only way. I could. was to chronicle it. And publicly. No more hiding. No more charades.
My life the last seven years have been full of fear, anxiety, panic, and exhaustion. This is my way of showing you how I really was when you never saw me, when I was alone in my apartment, surrounded by a beautiful garden I rarely entered.
The images are uncomfortable, yes, but they are meant to be. There are no flowers here. This has been a journey of nightmares and fear, of panic and tremors but also dreams-- that one day I will walk normally again. I will wear my nice shoes again. I will go out without worrying about blacking out.
I wanted to show all of that. I wanted to show how important the body is to the 'self'. If you lose a sense of your body, you don't know who you are anymore. If you can't walk straight, you lose your confidence. You don't care to look in the mirror. You don’t care to change clothes or brush your hair. The body is a very important part of this project--the flesh, the bones, the breaking down of the body, the spirit.
I’ve left most of the images in a chronological order so that you can see the ups and downs: the fear and the hope that cycle my days, nights.
When you have suffered so acutely from chronic illness, you become absent from your own life, a ghost to yourself.
