Part 1 – https//wp.me/p7XDkZ-cT
“I see inflammation!”, said the GE and pointed at the screen. I could see it, too. And he kept advancing the scope till he had checked the complete colon.
“It’s an autoimmune disease. One of the ways the body fights infection is by inflammation. Your colon thinks there is infection when there is none, and it stays inflamed. The persistent inflammation has caused lesions and wounds and ulcers. The good news is that it is limited to a third of your colon, the rest is just fine”. It still didn’t hit me. I was relieved at getting a diagnosis at least. And then I looked at my mom’s face – death pale.
The doctor explained that there is no known cause or cure for the disease and the best I could do is manage it by making food choices. I could have periods of remission but it would keep coming back. And there were all sorts of steroids to gulp and to use. I’d already lost so much weight that I didn’t fit into anything. I read the side effects – weight loss, hair loss, colon cancer – death sentence written on the wall. I kept losing weight, I lost hair in clumps, I greyed considerably. My colon couldn’t quite absorb all the nutrients from my anyway restricted diet. I loved milk but suddenly it was forbidden. I grew up in the countryside, practically on milk. And now it was banned. All street food was off my diet chart, all food with high fiber content was off, all fruits with seeds were off, all hard to digest food was off, oh and for the love of God, cashews were off.
My worry was running the house. If I died, who would care for my parents. I have two siblings but they weren’t exactly in a spot to take that role on. My mother was already dying with worry. She had lost her eldest brother to the same disease. She took care of what I ate. She cooked for me – separately – so that I didn’t suffer. One wrong meal meant days of agony. And then she had a bigger worry – who would want to marry a sick girl. Perhaps the biggest worry in Indian society.
Going to work was a struggle. You couldn’t explain in meetings why you needed to step away so often. You would be worried sick on the way to work – the two hour commute – and what if you needed to go. I just sat tight and prayed. But I kept going to work, nevertheless. One could accumulate leave and convert it to cash. I could do with the extra cash.
I didn’t improve. My doctor wanted to put me on a medical trial. I didn’t grasp it fully – I didn’t even know people are used as guinea pigs for new medicines. Patients as young as me. I wasn’t even 30. So what if I wanted to die, i just couldn’t die. What did the doctor care – his research mattered. A friend intervened and asked me to decline being a part of the trial. I did.
I joined a support group – everyone was suffering. There was no support in the group. Everyone just wanted to kill themselves and end the agony.
I started finding more and more people who suffered from the ailment. The unheard of disease was actually common. Another maternal of mine had it, a cousin had it, a colleague’s brother had it. The colleague told me never to go for surgery as her brother had. He had a colostomy bag. I shuddered at the thought and felt for him.
My diet was restricted to a few fruits and a few vegetables and roti (flat bread). My mom was devoted to me and it hurt to see her suffer. She just didn’t want to lose me. She went to priests, she prayed, she took care of me.
I fell in love again. Besides other reasons, this was one reason that I never openly told the guy that I loved him. Who would want to be saddled with lifetime of sickness. I lost him. But I didn’t want to lose the battle against the disease.
..to be continued…