I was operated upon for a brain tumour, known as acoustic neurofibroma in medical parlance, in April 1995. This was essentially a benign tumour on the 8th cranial nerve or auditory nerve, which had unfortunately grown so much that it was also resting on my facial nerves (sensory and motor) and would result in the paralysis of my face if operated upon. It was providential that my search for a solution to the chronic symptoms stemming from this tumour, ended with Prof. B Ramamurthy, India’s most eminent neurosurgeon, who during our first meeting itself suspected this condition and asked us to go for an urgent MRI scan. The scan revealed a lemon-sized tumour merrily growing inside my head. After announcing that I had a ‘ticking’ time-bomb in my head, he advised immediate surgery. There was very little time for preparation. We moved back to my father’s house with the children and the foremost thing for me to do was to chop of my knee-length hair, an impediment for head surgery. The next important thing was to apprise my precocious first child about the impending surgery. I was at a loss as to how to put it across to her, considering that she was a very sensitive child. I was given just a 10% chance of survival and I couldn’t imagine how she would take it, if I did not come back. We finally decided to put it to her mildly that I had to go in for a little operation and would be back soon.
For Niky, it was a huge shock when I came home with a crew cut. I remembered the days when as an infant, she was so awestruck by my knee-length hair that she insisted on having a wig on her head and was going about with the false hair for days together until she got a huge headache. I can’t fathom what went on in her mind when she first saw me after the haircut, in preparation for my surgery. But I could surmise that being highly intuitive; she could possibly infer about the gravity of my illness and the threat to my life.
On 25 April 1995, the surgery was performed successfully by Dr. B. Ramamurthy and his expert team. After about two weeks, I returned home from the hospital with a huge bandage around my bald head, with the right side of my face so paralyzed that my lips were almost touching my right ear! And I was too preoccupied with my own pain and associated consequences of the life-threatening surgery to notice the impact it had on little Niky, who was already sketching and painting portraits of people and writing stories. It must have been the hugest shock for Niky to see her mother’s mangled face! Chinky was too young to notice the difference.
Much later in life, I came to know that the impact of my surgery on Niky was life-changing and extremely traumatic. Not only would the little creative heart come to witness the contorted face of the woman she loved so much, but she had been blamed for my condition by her maternal grandmother who could not comprehend that her grandchild in fact was a gifted child, and was hence different from other children. She was branded her as being ‘difficult’. In solitude, the little girl beat herself up with a ladle and tried to jump off the roof of the balcony of her grandparent’s house when I had been in the hospital. She had fervently prayed,’ God! Please take my life and give back my mother to me!” Such astute perception of the crisis is rare for a child of her age. I had never heard a child pray for her mother’s life, offering her own!
The setting was moving toward a crescendo when soon the little girl would tread into a life-long journey replete with pain and suffering. The little cells in the body could not take the stress anymore and be probably getting ready to fight off the stressful state of mind she was in. Not to mention that she had just relocated from another continent, which was more liberal and friendly, to an extremely traditional and confining ambiance in school, where creativity and originality were being hampered by a rigid educational system and learning was imparted by teachers conditioned by a feudal mindset that characterized the system.
And I was simply in no position to explain the vagaries of life to my little princess who was thrown viciously into turbulent seas, with such suddenness that she had no way of coping with the trauma life had thrown at her diminutive persona!
Note: In this series, I will be putting down facts and events that have happened to me as a matter of fact. Anything I say in these articles is based on my own understanding and experiences and not on any scientific research. I would also like to mention here that I would be drawing upon those experiences of my eventful life, which I believe are relevant to the discussion of the emergence of autoimmune conditions in my child, who we think is different from many other children. I will be trying to make it as relevant to parents of T1D children as possible, but with a plea not to infer anything, compare or follow any of the practices we as a family followed. Simply because, every family is different, every child is different and so are circumstances. The takeaway should be confined to the existence of various possibilities, opportunities and a positive approach toward creating a fulfilling life for your child.
About the author:
Swati Amar is a journalist, author, media entrepreneur and consultant and an advocate of social issues. Holder of a Master’s degree in Psychology from Delhi University, she worked in State Bank of India as an officer and resigned after five years. After a brief stint abroad, she returned to India and took up professional writing as a full-time occupation in 1995 following a brain tumour surgery. She has written over 15,000 articles in English and Tamil. She is a Member of the Chennai Press Club.