No Smiling For Me
“When I was born, I was told, I was a new sunshine in the life of my parents who had very patiently waited for about twelve years for this golden moment.”
I was with a young, smart and beautiful girl in a wheelchair. She was about eighteen years old and had come to Morrison’s Supermarket for shopping in the Queensbury area of North London. Her mother had parked her wheelchair in the magazine department, where I was choosing some magazines to help me to learn more about the British people.
The mother of the girl, who was called Anne, would take some time with her shopping and that gave me a chance to talk with this young disabled girl.
“I was the only child in my family and a much loved one,” she told me. “My life started in luxury and love as my parents had everything to give me a wonderful childhood.
I was quite healthy till the age of eight. I was one of the most brilliant of nursery children and did well at school. But fate had something evil in store: a dark and gloomy future, none of us had ever dreamt of.
At nine, I was affected by an acute fever and was admitted in the hospital for treatment. Within a few days the fever disappeared, but then my parents noticed something awkward in my walking. There was something wrong with my legs. Then my face, my ever-smiling face, seemed to be expressionless. My usually chattering mouth became stiff. My parents could not make out anything from my blank look. But one thing was certain: I was not smiling. And my legs were by now not working properly. I needed support to walk.
Immediately, they took me to our senior family doctor, Dr. Malvankar, an Indian, who was very kind and friendly with me. He was worried by my condition and arranged for further diagnosis.
The doctor could not identify the real problem but he believed the cause to be the side effects of certain antibiotic drugs and advised my parent to admit me to a private special hospital for better treatment before anything else went wrong. There was the possibility of paralysis of the lower part of my body.
I was admitted in the hospital in the ICU Department under the care of a child specialist, Dr. Rao. Several samples of blood and urine were taken. My parents were desperately worried; they could not face the worsening situation of their only beloved child, whose smile was their tonic and whose presence was their future. Surely I was their darling child opening a new and shining chapter in their married life after 12 years. My birth as such had really blessed them with a glittering future.
My legs deteriorated. The muscles of both legs weakened and I could not walk without the help of a nurse. Even constant observation by three specialists did not help much.
To the shock of my parents, the tests revealed that I was suffering from FSH Muscular Dystrophy, which according, to Dr. Rao. affects fifty people in a million and un-luckily I was one of them. It causes the facial nerves and muscles to become very weak, making it hard to express one’s emotions. It might affect speech in the long run. I could not smile any more. That was it.
I remembered how, two years earlier, I had fallen down in the bathroom. I had been admitted to hospital and released after five days with nothing like serious diagnosed.
My parents were heart-broken when they learned of my condition, but I had a long way to go. My legs had grown so weak that I had no alternative but to use a wheelchair. Instead of being a teenager building her own future; I was dependent on my parents.
Now I could not get up early on my own as I had to wait for one of my parents to help me in the bathroom, toilet and kitchen. My bicycle was of no use now. I could not go to friends or the nearby shopping centre alone any more. I couldn’t attend a normal school as there were no facilities for handicapped children in the particular school.
But my parents, especially my mother, are so good with me that I forget the agonies of my life and do lot of reading and writing. I don’t mind people talking over my head when I am out in wheel chair with my mum. People look at me with sympathy or some even with disgust. But God, my guide and my hope, helped me with this pain and hurt. He has really taken care of my brain and speech,
I write for several magazines and some newspapers, and I also give talks in schools. That is the plus point of my life and I was happy doing it. I am well paid and I am happy at least I am able to help my mother to meet the house expenses that were not enough as she had to quit the job for me.
I am quite happy with my disability, but unfortunately I am unable to express it on my face with a smile; that is beyond my capacity now. I express my feelings through my pen and speech. I have a totally positive outlook on life. I am better off than many other handicapped people without lovely parents like mine.
Look, here is my angel mother with lots of shopping for me.”
“Please, no photograph,” Anne’s devoted mother requested me with a sweet smile when I brought out my camera. But Anne who had been my friend in a very short time allowed me to take one.