by Radhika Balasubramani
I think the feeling that something was not quite right came to me in 2006. I was 21, studying for a Masters degree in England. I can remember when I would feel like I wanted to say something, but the words wouldn’t come out. I had been on anti-seizure medications for 2 years as a C.T. scan had shown a small lesion... I just don’t know why I didn’t connect the dots or at least refused to. My flatmate, a lovely girl from Singapore, attributed it to a panic attack. She said she had seen her sister have a few and it could be due to the cold. I convinced myself that it was one. I did not want anything preventing me from my goals, my ambitions. I wanted a job, a career, to be independent. So I would not let anything come in my way. I wrote my dissertation and that feeling came back. Feeling rather uneasy about it, I visited my brother in Cardiff who had just started his under graduation. He advised me take a break and go home for a while.
I think it was a guardian angel protecting me while I was away. A month after I was home, I developed a high fever and seizures. This time the scan confirmed a tumour. I was operated on immediately. We were told that it was a DNET and radiation would not be required. I was relieved and started my first job wearing a scarf after five months. I was certain that all my medical issues were over and I could embark on a new life...maybe it would just take more time.
Little did I know that life had a different plan chalked out for me. Three months into my job, I was drained and to a large extent dissatisfied. For the next two years, after I had quit, I can remember basically being unwell and visiting hospitals quite often - for TB, Typhoid fever. My immunity was at an all-time low. I was terribly underweight, weak, had no appetite and over medicated. Things started to deteriorate in 2009 when I was admitted after seizures and this is when my body pain started. My walk gradually started to decline. I was advised physiotherapy and that became my life.
Meanwhile, the recent scans had shown that the tumour had recurred. My father had heard about Dr. Prithika Chary and we decided to get an opinion from her. Needless to say, I was impressed. I remember smiling after leaving her office. I thought to myself that she was the best person to navigate me through the hell I was going through. The plan was to methodically rule out every possible option, starting with the spine.
However, a few days after we got back, one afternoon after a physio session, my left quadriceps went into a spasm. I was admitted after unbearable pain in my body, especially in my legs. Being touched was agonising. The pain was brought down and subsequently, the tumour was removed. Dr. Senthilnathan and Dr. Prithika at Apollo did a fantastic job. A biopsy was done and a second opinion taken at NIMHANS confirmed that it was a grade II/ III Astrocytoma.
The pain had reduced but I was still unable to walk. I was given crutches to walk on and underwent radiation therapy. No one could figure out why I couldn’t walk after several weeks of physiotherapy. In neurological cases, it could be two weeks; it could be two months...
I went to several physiotherapists, including one who specialised in neuro physiotherapy. It was always the same routine. Struggle getting into the car, struggle during therapy and struggle getting back. I used to restrict myself from drinking water as getting up from the couch and going to the loo was painful. Therapy at home wasn’t any better. To relieve my stiff muscles, hot wax was poured all over my body. I was exhausted.
Still, we knew there had to be some solution. So we began to look at alternative therapy and found the Locomat. It is locomotion therapy on a treadmill where you are hooked on to a robot-like machine that helps you walk. It looked promising and we had read great reviews. I complained of extreme pain when they use to strap me on, but no one heard or believed me. I think over time, the pain became my normality. Two months into Locomat, we saw no improvement.
It was around this time when one physiotherapist noticed that my left leg was a bit shorter than my right. By this time, I had got used to hearing all sorts of things. We met an Orthopedist at Global, Dr. Ajit Yadav, who had me take a blood test and a bone scan. I also met an Endocrinologist, Dr. Sruti Chandrasekaran who reviewed my case and treated me more like a friend. The bone scan results were scary. Most of my body was fractured. I had a severe vitamin D deficiency. I finally had the answer for my pain. I was given multiple supplements and put on opioid pain patches. After my bones had regained some strength, an osteotomy was done to correct the position of the hip bone as not doing it would give me a lifelong limp.
It took a long time for me to strengthen every part of my body. Even though I could walk technically, my muscles had forgotten how to. I had been on crutches for over a year after the brain surgery and used them again for 4-5 months after my hip one. I had to re-learn how to walk, like a baby, using the walls for support, how to place the heel first, swing my arms like how normal people do. I had forgotten everything.
Slowly, I began to walk, unassisted with a normal gait. From icing my knees and thighs due to pain after walking around my dining table twice a day (which was my goal when I had crutches), I now walk over 3kms everyday without getting tired on the treadmill. It feels amazing to do a yoga pose, which a year ago, I wouldn’t have dreamt trying. I feel fit, I feel good.
The beauty of illness is that it teaches you many things. Endlessly waiting for test results, scan results, doctors..... Waiting teaches you patience which as the cliché goes is a virtue. If I could have just one wish, I would erase these painful years and go back to when I was 21, all healthy of course. But then I think of the person I am today, so much stronger, so much wiser. I always tell my mom that I’m like the Phoenix, the mythical bird. I am reborn from my own ashes into a much stronger person.
I don’t like talking about my health history. People tend to look at you differently and that’s the last thing I want. However, I also believe it is important to give people hope. Every time I visit Dr. Prithika, I feel terrible when I look at the people around me. I remember I used be one of those people. Besides, I have an amazing family who will never let me feel down even if I want to soak myself in self-pity!!
It’s been four years since the surgery and I am taking it one day at a time. I think, when things aren’t going your way, you just HAVE to hold on and not let the pain get to you. You HAVE to believe in a better future. Believe that something WILL work out and it just will. ***