Days of Illness: A Personal Essay On Living With Disability
“Whenever my disabled body gets ill, I have to mentally prepare for the worst.”
Day three of illness. It's December. The peak of winter. My legs have stopped working. No, can't even stand up. Thankfully I gave up on closing the main gate of my apartment a day ago, so people can come in if there is an emergency. Whenever my disabled body gets ill, I have to mentally prepare for the worst. I can't take anything lightly. Not after being bedridden for almost two months every year for the last few years.
I was full of excitement just a few days ago. I was supposed to fly out for a friend's wedding. Catch up with old friends.
When you get older, marriages become an important occasion to catch up with long lost friends. But now it reminds me of extra work. The ticket for that trip has to be canceled. All the plans have to be canceled. Life has to take a break, for now.
In the meanwhile, things are deteriorating around me.
The room is unkempt. Now getting smelly. There is uneaten food spread all over the ground near my single bed. My bedsheets are dirty. I try to move from my bed and fall down. Once you fall, it’s difficult to get back up. I have switched off all the lights to save myself. There is no need to see myself falling down again and again. No need to see how dirty my room is. There are just a table lamp and a small heater which lights the room in ghastly yellow colors.
This was all unfair, to begin with. It was always supposed to be just seasonal flu. But then, my urinary tracts were infected. Something that has haunted me since childhood. Fistula. Infection. Operation. Fistula. Infection.
The cycle continues to be an inseparable part of my life. The infection is getting worse. It has probably spread to the bladder, and maybe kidneys too.
You can't be on your own. You have to do something about your situation. But hospitals are scary. And they are expensive. So you try your best not to go to a hospital. Even if it comes at the cost of your independence. But then as a disabled person with chronic illness, you seldom get to be completely independent.
So you decide to go wherever mom is. But wait, you can't move. How will you go when you can't pack or put on your clothes? You call one your closest friends. He comes and transforms himself into your carer. He is unhurried and not at all disgusted with all the diapers lying around.
Stop! Had you forgotten about the twenty-odd stairs which you had to climb down to reach the taxi waiting on the ground floor? Why did you take a flat on the first floor despite being disabled? Voices crowd my head but I was too weak to listen to them.
My friend weighs less than half of what I do and with my dead legs, it's impossible to walk even with his help. It's time to make a decision. I made a decision. By the grace of disabled gods, I declare that 'I will crawl'.
On a cold Delhi morning, with neighbors stealing glances from their half-opened doors, we decided to get tumbling. One step after the other, crawling on my fours. Like a cat or a tiger or a human. Finally after a lot of huffing and puffing, and a lot of breaks, we finally made it to the last step.
None of the neighbors came to offer help. The old uncle passed by us as if we were invisible. But it’s all the in past. We are in the taxi now. On our way to the airport. I close my eyes. Blackout.
Day Thirty of illness
January is my birthday month. But this year January was especially cruel. I was lying on the bed, recovering from another kidney infection, something that has become part of my annual illness schedule. It didn't help that I was completely unable to move by myself. My disability had made my legs used to numbness. But this January that numbness was an extension of my body. Whatever I did, the numbness won't go away.
My mother had given up all other worldly pursuits to care for me. She wanted to do this. Or so I wanted to believe.
As days went by, suffocation replaced the air in my room and it became difficult to breathe at times. Will I recover from this? Will I be able to walk again? The question that used to keep me awake on cold nights.
It was way past midnight when we used to explode. Me and my mother. When she had just slept but then I had to wake her up. My diapers were wet and leaking. It was cold outside. While she changed the diapers and sheets, my body would refuse to even cooperate. And I hated it when it would lie there, helpless and naked while she cleaned it. I was irritated and embarrassed by the nakedness of my illness. I turned thirty-three this January.
Day Sixty-Three of Illness
Day sixty-three of illness. I am learning to walk again. First using a walker. Then using a stick. And walls for support. My legs are very weak. My backaches. But scoliosis seems nothing compared to the limpness of my legs. I don't know when I will be able to live on my own again. My one-room apartment awaits. The indoor plants that I bought six months ago have probably died.
My recovery is slower each successive time that I fall ill. There are no instant solutions. No one wants to operate on my fistula.
It's in a tricky place and I could lose control over my shit if things go badly. Not that I have much control left. But as the body recovers, there are fewer diaper changes and the sense of self returns. The rebellious parts of my body are slowly being brought to order.
I still have plans. Or dreams. I can’t differentiate between the two anymore. Living an independent life without having to worry about illness. Finding love. Having a relationship. Being there for my friends. Having good mental health. I dream a lot. They make me hopeful.
(Abhishek Anicca is a poet, writer, and disability rights activist. He identifies as a disabled and chronically ill person.)
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