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.
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.
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.
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.
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. 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.
(Abhishek Anicca is a poet, writer, and disability rights activist. He identifies as a disabled and chronically ill person.)
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