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Against all odds
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Her facial deformity did not come in the way of a successful career or her family life. DR. THARA SRINIVASAN describes how she got over her problems — physical and mental.
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THE year — 1987. It was a Rotary meeting in a town in Tamil Nadu. As a member of the newly selected GSE team to spend seven weeks in the United States, I walked on to the stage to be introduced. I could not fail to hear some people in the gathering "What is wrong with her nose? Why are they selecting such people?" I ignored them and kept walking. Ironically enough, this did not in any way deter from my active participation in over 20 meetings in the U. S..
"I know you will do a good job, but you know these TV people. They are selective in some ways. I am sure you know what I mean," said a senior colleague 15 years ago when an awareness programme on mental health was being planned. Of course, I knew what he was implying and was certainly not surprised.
Having learnt to accept my facial deformity from a young age, I was aware that others may not be able to do so as easily. I guess this has helped me to identify with people with other disabilities and work for their welfare.
1953: My mother was just 16 and I was her first baby. There was great excitement in the family. This anticipation was soon replaced by an acute sense of disappointment, fear and anxiety. I was born with a huge gap in my upper lip, part of my nose seemed missing and my face was probably repulsive. Although an otherwise normal baby, my cry was nasal and anything I swallowed came out through my nose. Doctors said that I was born with a cleft palate and lip — both congenital malformations of the face. There was no family history of any disability or deformity. How and why did this happen? Plastic surgery was not a known discipline in India at that time. So one of my relatives, a reputed general surgeon, took the bold step of operating on me when I was just a few days old. He repaired the lip thereby reducing the deformity to a certain extent. But since the palate was still not closed, feeding me continued to be a problem. I was never breast-fed. It was spoon-feeding all the time.
My young mother went through an array of emotions — anxiety, guilt, lack of confidence in handling the child and, above all, grave concern about my future — more so because I was a girl. She had also been told that my condition could be associated with low intelligence and cardiac anomalies. It was only the support she received from her mother and sister that helped her pull through every single crisis. Numerous prayers and silver bells were offered to the Gods with hope that I should be able to speak normally.
After a few months, I was taken to Christian Medical College (CMC), Vellore, to be treated by an American who was also not a plastic surgeon. He too expressed his difficulties in closing the palate and recommended speech exercises. When I was three, I was given a denture to close my palate. This obviously was a boon, facilitating easier feeding and more understandable speech. From then on, for about 12 months, my life was punctuated by repeated trips to Vellore for speech therapy. Even a simple task like blowing out a candle was a huge effort and required intense practice.
By then I had joined school and did reasonably well. I, however, remember an incident when my denture caused problems as a result of which I had to remove it while in class. Ashamed to speak without it, I wrote a note to my friend sitting next to me that I needed to go home immediately. I recall the quizzical expressions of my classmates who wondered why an apparently healthy girl should suddenly report ill. My teachers and friends fortunately displayed great understanding that was a critical factor and determined my attitude to life and people.
Ironically, as a girl, I always preferred male company. More feminine interests such as clothes, dressing and jewellery were not my forte and I was more comfortable discussing sports and politics with men. Maybe this is also why I love animals in general and dogs in particular — they always gave me unconditional love. I topped my class in school and in the matriculation exams and was also good at table tennis. I was determined to be independent in life and chose medicine as a vocation.
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CLEFT lip and palate occur in one out of 700-1000 births. Its etiology is still under debate - genetic factors being one of them. Nutritional deficiencies during pregnancy, administration of steroids and psychological stress during pregnancy have all been implicated. Cleft lip can be unilateral or bilateral, complete or incomplete. Palate clefts can be partial or complete. Breast feeding, speech development, improper growth, poor dentition, low IQ and facial disfigurement are the common problems. Psychological sequelae such as low self esteem, depression and anxiety abound in such people. Even the suicide rates are high. Treatment in the form of corrective surgery and supportive counselling can produce very beneficial results. T.S
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Whenever I came across women with cleft palates or lips in the hospital wards, I would talk to them about their lives, their sorrows and find out if their children also had such deformities. Most had not undergone corrective surgery. One of my professors, probably meaning well, warned me that if I did not go for a nasal correction, I would fail as a doctor, a prediction that luckily has not come true. Since plastic surgery was an advanced discipline in the 1970s, several well-wishers gave me the same advice.
But, much to the chagrin of my family, I was very clear that I would not subject myself to these procedures after having lived this way for more than 20 years. Why should I change my physical appearance? Let people accept me as I am and not let my nose or palate influence them. That was my stand.
My parents were, of course, by then concerned about my marriage. But I was very clear that my marriage, if at all there was one, would not be an arranged one. I was aware of the problems faced by women with other disabilities and their rejection and pain. I did not want to take the risk of marrying someone who would later hold my deformity against me.
I married a person of my choice and the support I have received from him and his family has carried me through for 25 happy years. I was very apprehensive about having a child since I knew that cleft palate and lip were hereditary. I could never have lived with the guilt of passing on this unfortunate legacy to another human being. But my husband's confidence led me to decide to have a child after five years of marriage. I still cannot forget the anxious faces of my family members seeking reassurance while I was being taken to the labour ward. All went well and my daughter is now a charming 19 year old.
I have been able to make some mark in my chosen vocation — psychiatry. I am part of an organisation dealing with mental disability. I have a national and international standing in research and am invited the world over to deliver lectures. I have appeared in several TV programmes, my face notwithstanding. My main interest is disability in general and mental disability in particular and I am especially trying to dispel the stigma and discrimination associated with this condition. I believe my person experience makes me eminently suitable for this crusade.
I have the satisfaction of having coped with a major challenge. My message to everybody with this deformity is to go ahead and have corrective surgery done and face life with confidence and optimism. With confidence, courage and faith all challenges will melt.
My grandmother is no more but she was alive to see me beat the stigma of my deformity and conquer obstacles in the process. Still vivid in my memory is an image of ammam, as I called her, her big eyes choked with tears after every public appearance of mine. They were tears of joy and gratitude that her gods had not let her down. Her bells in the temples had done the trick.
The writer is with the Schizophrenia Research Foundation, Chennai.
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