I sat down to write this article with the intent of describing some personal experiences with my family and friends during a period of progressing sickness that eventually led to surgery. It’s very hard for me to segregate various aspects of that time. I was struggling on many fronts. Everything seems so intertwined. I probably would have managed better, if the only thing I had to worry about had been my health. Sometimes, I wonder if I could live through that again. The worst parts of that period were the nights. Serially failing medications had brought me to a point where I was living with severe chronic pain and total incontinence. Every night I would go through a sequence of muffled crying, screaming, and dancing, to wither and end up on the floor like a lifeless body. I did that deliberately to tire myself out and fall asleep. Every night it was the same routine. Some nights, the urge to end it all was too strong to resist. I dreaded the nights and took up a night job to cope. I thought if I forced my mind to concentrate on a job, it would help with the pain. I’d suffocate at work, and even had “accidents” at work, despite wearing diapers. Everyone around me in my home or outside was oblivious to what I did to myself in my room in the dark. My coping mechanisms bordered on the psychotic. I would strangulate my body parts to make them numb. I would try to substitute the pain with another kind of pain by using an excessively hot pad. The pain was too much. The blood was too much. The nights were too long. The thing that hurt more than the pain was that every medication would make a mockery of my attempts to live. Early promising results followed by a rapid decline leading to increased symptoms were a pattern. At my core, I’m not a very hopeful person. My life circumstances have molded me into a deeply introverted and pessimist personality. My mind constantly tries to simulate everything that can go wrong and I try my best to put control measures in place. With this disease though, I was helpless. I read vehemently, but I was not a doctor. I forced myself to cultivate hope with every new medication. However, I always ended up dejected. Sometimes, I felt like a bloody soldier struggling to stand straight, kneeling on the ground against his sword, and waiting for all of it to get over.
As I started reminiscing those nights, my intents changed. I wanted to describe that cycle of hope and consequent despair to someone. It resulted in me writing a poem which I’m sharing here.
They tell me the war is over and we won.
They tell me that the night is at last, gone.
They tell me the sun’s rising on the horizon.
They tell me, they tell me it’s a new dawn.
They tell me the same things again and again.
And each time they say it, I believe them.
I hide from my fears, behind a translucent curtain.
Weak ropes of hope bear the weight of my pain.
Soon it all comes crashing down to the ground.
And I see them again. The blood-hungry hounds.
Dread sets into me as they approach and surround.
Every inch of me bleeds. My screams resound.
And when it’s all over, I look down from the edge.
Frail, pale, broken, and defeated, after the rampage.
No antidote to my ailment, my soul feels caged.
Desperate, I am prepared to embrace the only escape.
“Stop! Don’t!” I hear a voice break the silence.
I recognize the voice. It’s them. Once again.
They praise my resilience. Talk about Providence.
Promise me there’s a reason for my existence.
They look to infuse me with hope and faith.
They tell me tales of the fierce and brave.
Why then I don’t believe what they say?
Oh! It’s because, soon after ...
They tell me the war is over and we won.
They tell me that the night is at last, gone.
They tell me the sun’s rising on the horizon.
They tell me, they tell me it’s a new dawn.
There was a time when I tried to capture my pain in words. I was better at writing then. With time, the writing started to feel like a futile exercise. The nights never went away. Instead, I now try to repress those experiences in some corner of my brain as I have done with other traumatic incidents that I have lived through.
My doctor once told me that there were only 2 patients other than me under his care, with a severity of disease that was similar to mine. I felt sad, but then I realized it’s a good thing that more people do not go through such experiences. However, I’m sure there are enough like me in my country which has a population of 1.3 billion, but I’m not sure if everyone is as lucky as me. The mental health of patients with Inflammatory Bowel Disease has never been a priority in the Indian Healthcare system. It’s time that we begin to provide holistic support to young adults with inflammatory bowel diseases to enable them to manage this disease better and come out of the experience with as little residual trauma as possible.
Please stay safe and take care. See you next month. :)
