Whenever we encounter traumatic experiences, we see our lives unravel. We realise how life can change dramatically within minutes. The Greek tragedian philosopher, Aeschylus said that from suffering alone comes wisdom and that such wisdom earned from our struggles and strife brings great depth and dignity to our lives.
This journey into my past is one where I saw my life take a track spectacularly tangential and changed me irrepressibly (for better) within minutes.
It was exactly 29 years 9 months and 7 days ago that I was going to Bangalore in an Ambassador Taxi along with two of my friends from advertising circles. I was perhaps the happiest person on the planet after having become a parent of a baby girl just four days before. I was going to Bangalore to be with my wife Mamatha and my yet to be named baby. The wind was blasting through the open car windows, and I was having a whale of time cracking jokes. “How do you deal with a lousy sales manager?” Kishore asked. “Transfer him to Jaffna, headquarters of LTTE,” I said. “How do you deal with an inefficient accountant?” he asked; “Ask him to go and appoint a CSA in Srinagar, Kashmir” my friends cracked up to my answers. I have many times since recalled the ominous warning from my mother when I was a kid not to laugh too hard on silly things as something evil always befalls prolonged and intense laughter!
I went directly to Ward no. 8 at Gayithri Nursing home where Mamatha with our newborn baby girl was being nursed in keeping with the prevailing postnatal practices of taking care of the mother and newborn up to a week after childbirth. I stroked my four-day-old daughter’s surprisingly thick hair softly with my fingers. I then opened her right palm with my fingers. She clasped my forefinger tightly sending the first surge of parental excitement in me. She was moving her hands and legs, but her eyes were still closed. I asked my mother-in-law why my baby wasn’t opening her eyes. She looked at her husband and after a brief pause said that it would sometimes take a couple of days for a newborn to open her eyes. There was an awkward silence, and I saw tears in Mamatha’s big and beautiful brown eyes. “She is not opening her eyes fully. They say she has a problem in her eyes and it will take three to four days for the ophthalmologist to make a proper diagnosis. But she is fine in all other APGAR tests.” I was stunned. I felt a pang of current and shock reach my forehead through my spine. “What? What problem?” I looked at my father-in-law desperately wanting to know more.
I went delirious trying to find out what was wrong with my baby’s eyes. I spent the next two days questioning three separate doctors, Dr K.R. Murthy the famed eye specialist, Dr.Subramani, an eye surgeon, and Dr Sudhamathi Kannan, the attending gynaecologist but no one told me anything accurately. Mamatha’s uncle, Dr.Jayaprakash who was monitoring her said that the baby had a condition called ‘Coloboma’ and that there was nothing to be worried. I called my brother Sridhar who is an M.D. in internal medicine and told him about the problem. His wife had delivered a baby boy just the day before. In spite of this, Sridhar came down to Bangalore the next day.
Sridhar went in with a pocket camera and discussed alone with Dr Murthy who headed Prabha eye clinic and came out after 10 minutes. He took me outside for a coffee and took a few minutes looking out of the window silently after ordering coffee. ‘Lo Sridhara, does my baby have a serious problem?’ I asked him nervously. ‘It is early to say anything’ he said avoiding my eyes. Sometimes everything becomes OK as the baby grows. It is myopia combined with Coloboma’. He continued and said ‘to be honest Mona, there was no pupillary reaction in both her eyes when I flashed my pocket camera.’ He paused and said after a deep sigh “certain things that happen in life are just unfair Mona. What can you do?”
My heart sank at that moment for I knew that my daughter was born blind but refused to say the ‘B’ word aloud in my mind. I felt cheated that while all my brothers, sisters, cousins and friends were blessed with normal and healthy children, I was left with a child with vision loss. I felt that life was unfair only to me!
“Her eyes look normal from outside no?” Mamatha asked me looking at the baby wiping her tears.
“Yes, of course,” I said.
“Then why does she not look at me?”
“She is only a few days old. I think the eyes need to develop more fully” I said suppressing my choked up emotions. Looking at the tears in my eyes Mamatha said wiping her tears with her sleeve “Don’t worry, Mohan, I will surely give you a healthy child,” Mamatha told as we drove back to her parent’s house. “Come on Mamatha, it will be OK,” I said unconvincingly.
We were both tired and sleepy, and though it was just past noon, I fell asleep watching Yogita in between us sleeping like a little angel sent by a lesser God with her tiny little fists held up and rested next to her small shoulders.
With no proper answers and no one else to turn to, I returned to Mysore.
Sitting at my Gokulum house alone with a bottle of rum I spent the whole evening trying to come to grips with the catastrophe. I was sad, confused and felt extremely angry whenever God crossed my mind. What was in store for my daughter? How was I going to deal with the situation? How to instil positivity and confidence in Mamatha? (it is another matter that she ended up instilling positivity in me!)What will our life be from now on? My mind had a combination of different feelings starting from an acute sense of shock accompanied by self-pity a sense of helpless anger and intense feeling of sadness for my baby and Mamatha. I had never experienced this quantum of grief in my entire life of 31 years. Tears just rolled down my cheeks, and there was no controlling my sobbing; I was devastated.
I opened up a bottle of Rum. I polished off 400 ml of Old Monk rum questioning and trying to find an answer to the age-old, foolish question: ‘why me?’ Like a worn-out recording my mind kept on repeating the same question; out of all people in the world and particularly among the nine children of my parents, why was I selected to bear a blind child?’ I had to have an answer. The string of questions I kept asking seemed endless. ‘Have I ill-treated any blind person before? Did this happen because I did not take Mamatha to our joint family and chose to live separately? Or, is it because I was arrogant and disobedient to my elder brothers and was it Karmic payback? Was it the steroid ointment that I used on and off for contact dermatitis? Was it due to the pills that Mamatha took for threatened abortion when she was two months pregnant? Is this divine retribution for taking on my brothers for my rights in our family firm? Am I a bad person and is that why my daughter has an eye defect? Is this due to some evil eyes?’
I fell asleep at around 2:30 in the morning and slept till ten in the morning. As soon as I opened my eyes, I felt a very heavy rod strike my head with full force. The jolt was not the side effect of a hangover, but the mental image of my baby’s closed eyes. I started shaking with grief and self-pity in seconds. Tears welled up again. I felt furious all of a sudden and something like a losing adamant boxer’s challenge came over me. I took the half-empty bottle lying by the bedside and hurled it at the wall shattering it into pieces. I vowed never to drink again, not until I solved my daughter’s vision problem.
I did not touch alcohol for the next 18 years.
Becoming the parent of a child with disabilities is a unique legacy and the starting of a journey full of unprecedented emotions and feelings. Like a famous writer of a child with Autism said, “normally when your first child is born, it is like going to a beautiful park that all parents go to expecting flowers and butterflies. But when you beget a child with disabilities, you find out to your horror that you have been sent to a National Park full of wild beasts and man-eaters instead of a beautiful garden that other parents get to go”.
Mamatha was 21 and her identity in her mind as a lucky charm of her family (“you are the Mahalakshmi, and wherever you go you will take happiness and prosperity with you” her mother had told her a million times) got washed away in a Tsunami of her tears. My long-held identity as the persecuted and the chosen one reinforced my delusion of grandeur!
Intense shock, confusion, disbelief, and denial continued the next day and the week after enveloped by a sense of overwhelming sadness and despair with extreme guilt that I had wronged someone somewhere. Over the next month, this turned into intense anger and feelings of bitterness and unfairness of the Almighty punishing a child. Resentment toward parents with healthy children was such that I would avoid public places at any cost. The need for isolation and a feeling that no one can truly understand how I felt became my only constant companion, Mamatha and the baby apart. We named the baby ‘Yogita’ in a simple naming ceremony.
Like all parents with children with disabilities Mamatha, and I turned to healers, seers, rituals, miracle cures and temples, all, of course to no avail.
One late evening as I sat rocking Yogita in my lap to put her to sleep, I suddenly realised that there was something repulsive about the notion of a Supreme force that would heal Yogita if I did the right ritual through the right God or Goddess. What kind of God deprives an innocent newborn of an organ and then changes His mind after He is appeased by people around that child? As if He deliberately made her handicapped with a plan to make it better only if Mamatha and I said the right prayer or conducted the proper ritual and we both surrendered and told Him how great He really is? I decided not to look at the sky for answers but within me.
Most of my friends and relatives were afraid that Yogita was too delicate and that they might harm her. They also found dealing with this disabled girl too much of unfamiliar territory. The most agonizingly consolatory advice was from a Trader and the father of a girl with Down Syndrome; ‘look how happy I am because my daughter has saved me millions of Rupees in Dowry and Gold that I would otherwise have to shell out if she was normal and if I had to marry her off’. Incredible as it may sound I am quoting him verbatim. Treating savings in material possessions as a consolation for your child’s disability is beyond my understanding of morality and ‘sour grapes’.
After discussing Yogita’s case with other parents of exceptional children, I felt that the least that I could do as a father was to get Yogita the best possible medical treatment in the world. I decided to take her to the Mayo Clinic as I had heard so much about the place.
We took her to Mayo clinic that was considered as the Mecca of Medicine, and after giving us a statistical possibility of 12% of recurrence in subsequent children, they advised Enucleation.
Enucleation is the removal of the eye that leaves the eye muscles and remaining orbital contents intact. It was the most excruciating, nerve-wracking advice for us. It was the doctor’s firm suggestion that it would be better to remove both of Yogita’s eyeballs and replace them with glass inserts or her eye sockets would shrink progressively and disfigure her face. Then, they also wanted to know if they could keep her eyeballs for research. We did not agree. It was shocking enough to hear about her vision condition and now to have my baby’s eyes taken away was merely asking for too much.
Can you imagine how we must have felt? This photograph was taken on the day after their advice. We refused.
Yes, my daughter was born not only blind but also retarded and could not utter even a single meaningful word all her life. The closest she ever came to was calling ‘Didil’ to refer to me, and ‘Ada’ for Mamatha. But the greatest satisfaction that Mamatha and I had was that Yogita herself never realised what she was missing. She was a happy girl. She led a pure unadulterated life where her mind did not come in the way of her unadulterated, pure and pristine love. She certainly brought greater depth and dignity to my life.
We live in a world of senses. Hearing, smelling, and seeing all the time. We take them all for granted. We only realise how precious they are when we do not see it deprived upon a loved one. Do you know something that most of us take for granted; our healthy children.
We have blessed us with two more children with abilities. It was not that Yogita was not normal. It was just that while we see through our eyes, she saw through her fingers. While we talk all the time she chose to listen.
I look back, and I wonder how on earth we coped during those two and a half years and how Mamatha gathered enough courage to conceive and deliver not one but two more healthy children. I guess she just did enough to get through the day and had a dogged determination to prove that Life is a leveller after all. I am not only grateful to Mamatha who gave me three children of different capabilities, but I am indebted to her in making me a man.
In the end it is the mother who takes the brunt of the emotional injury and it is Mamatha who is the true Protagonist.