When I was growing up, I often experienced chronic aches and pains without really knowing why. I spent 11 years trying to figure out what was happening to my body. Finally, doctors were able to identify the cause of my agony as Facioscapulohumeral Muscular Dystrophy (FSHD), a genetic muscle disorder wherein the muscles of the face, shoulder blades, and upper arms are among the most affected.
For as long as I could remember, my childhood was filled with sports. There was not a single sport that I had not played. I was always involved in every summer camp and extracurricular activity.
Then slowly, things started to change.
I first started feeling pain in my legs when I was in Class 4, and it would happen every once in a while.
If I had played an hour of cricket, I would feel some amount of pain, which was often attributed to either growing pains or even the absence of certain nutrition in my food.
Despite consulting numerous doctors and undergoing various regimens, things only got worse. When I was in Class 8, I started finding it difficult to even raise my hand above the shoulder. I knew that there was some major problem, but there was no clarity. We visited every big hospital in Lucknow but no one was ever able to give us an accurate diagnosis. They always prefixed the diagnosis with a ‘maybe’ or ‘might be’ and that did not help in any way.
From being a super active kid who would participate in all activities, I was now unable to walk even a few kilometres without experiencing any immense pain in my legs. I would fall very often, and the most frustrating part of all of this was not knowing what was happening to my body. According to the doctors, my symptoms were not visible enough for them to come to any conclusion about the diagnosis.
Sometime in Class 10, we gave up trying to find a name for what I was going through. I continued to live with the pain. During this period, I met with an acupuncture therapist, Dr Jagjeet Singh, who helped me manage the pain by various therapies. That brought me great relief, albeit temporary.
Every muscle in my body would hurt – the calf, the shoulder and even my back. It was always a Catch-22 situation for me. I wanted to lead a normal life. To be able to do that, I would push myself even through pain many times, but that always backfired. My years in school, unfortunately, were filled with bullying and dealing with people mocking me. These incidents strengthened my resolve to find a cure to whatever I was suffering from.
Finally, when I was in Class 11, doctors gave my condition a term – Myopathy. This refers to any disease that affects the muscles that control voluntary movement in the body. Even then, they were unable to narrow it down further.
My life thereafter was like a pendulum. There were some days when even the simple task of getting out of bed seemed next to impossible, while on other days, I would constantly keep falling and tripping over.
This pushed me to try and take up medicine. Unfortunately, I could not clear the medical entrance examination. Instead, I pursued a degree in pharmacy, so I would be able to understand what was happening within my body. I sought admission at BITS Pilani where I enrolled for Bachelors in Pharmacy. That was also my first time living alone, away from my parents. With no support whatsoever, I had to do everything for myself. My hostel room was on the first floor, so there was immense pressure on my muscles every day. That unfortunately meant that my condition worsened very fast.
To deal with the pain, I turned to alcohol and cigarettes. I began finding solace in substances, despite knowing that this habit would only worsen my condition. In 2016, when I was 20 years old, my situation deteriorated rapidly, and I found myself unable to walk without support. I could not even stand for too long. This was when we visited Dr Sunil Pradhan, a well-known neurologist at Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow. He finally gave my condition a proper diagnosis and termed it as Facioscapulohumeral Muscular Dystrophy.
A condition that has no cure
The pronouncement made by the doctor was a rather cold one. He laid the bare facts before me and told me that there was no way to reverse or cure this condition, and all I could do was work on managing the muscle loss and pain. Despite spending half my life wanting to know what was happening within me, the moment I knew, I felt something shatter. I felt like up until then I had some hope. But with the diagnosis, everything changed. It was a huge shock. I considered quitting college and going back home.
The only reason I persisted was my parents.
In fact, my father moved to my hostel to stay with me and help out. He settled me in, met my teachers and explained my condition to them. My mother was a huge support to me and one of the biggest reasons why I did not give up on myself. Even in my darkest times, my parents stood by me and kept nudging me to go on. It took me time before I accepted the diagnosis, but once I did, things were better. Dr Atish T Paul, my professor at BITS Pilani along with my two friends, Vedhant and Subham, have also been such big supporters.
Vedhant often describes me as a giant river that is flowing along to meet the sea.
While I continued to fight my condition, it was only recently that I changed the way I fought it. Even post diagnosis, I never wanted to accept my limitations and would fight it by physically pushing myself – walking, climbing stairs, and never giving in to the physical pain. But recently, a conversation with a friend opened my mind. Instead of fighting at my weakest point, I made a choice to fight my condition with my strengths. I am now in a wheelchair, and I am preserving my energy and my body to battle my condition with my strongest weapon – my mind. My entire focus on finding a cure for my condition, to not just help me, but all my fellow warriors.
– Shriyansh Srivastava, As Told to Vidya Raja