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 as it is for me. In that sense, this is not a documentary on chronic illness but an attempt to reclaim what I’ve lost. Not an elegy but an affirmation of living beyond just existing.
When you have suffered so acutely, you become absent from your own life, a ghost to yourself.
