[The idea for this story came after watching a programme on Asianet TV (Malayalam) on Saturday night on children suffering from autism.]
[I dedicate this story to the mothers of all differently abled children.]
I was born a ‘freak’ in general terms and a ‘creature’ as my father used to call me. I had disfigured legs, which could not stand on their own, what to talk of carrying the rest of my body! My hands were disfigured, they could not go where my mind wanted them to. I could not talk clearly, just a few syllables, which only my mother understood. When I looked straight, people thought I was looking sideways. When I look sideways, they thought I was looking straight. Am I not a freak?
Initially my parents employed a nurse to look after me. But she left after a few years because she had to look after her grandchildren. I was five years then. I remember our celebrating my fifth birthday. Mother invited all children in the neighbourhood to join in the festivities. But only three came. Who wants to say ‘happy birthday’ to a strange creature?
After the nurse left, my mother took leave from office for some time to look after me. She also searched for another nurse. Nobody was ready to come. When they would get an equal pay for much less and easy work, who would want to come and look after a freak like me? They would have to clean me, physically carry me to the toilet, bathe me, dress me, feed me, and so on and so forth. And I was growing up, too. So? Nobody came.
Mother left her job to look after me. That was when I heard the first bickering between father and mother. I woke up one day hearing loud voices. Father and mother were arguing over something.
Father said, ‘How long do you think we can carry on like this?’ Obviously they had been discussing for some time.
Mother said, ‘What do you mean, how long? As long as we can.’
‘Why don’t you engage a nurse and resume going to office? Why do you want to spoil your life for this creature?’
‘Creature?’ mother flared up. ‘He is our son. And I will look after him as long as I have the power in me. And do you think I didn’t try to hire a nurse? But nobody wants to come.’
‘Yes, who would want to nurse such an inhuman thing?’
There was silence for some time. Then I heard a considered, calculated, hush-hush suggestion from father.
Father said, ‘Hey, let us be practical. Don’t shout at me, okay?’
‘Hmm. There is no doctor or hospital we have not taken him to. Everybody had the same answer – that he cannot be cured. He will have to live like this till the end of his life. Right?’
‘Yes, so what?’
‘Well, hmm ... why don’t we bring that day nearer? I mean ... see, he is only a burden not only to us but to himself, too.’
‘What is it that you are suggesting? I don’t understand.’ There was horror in mother’s voice.
‘Why don’t we ... why don’t we ... let him die a peaceful death?’
I thought my world was turning topsy-turvy. I was small, a freak, or a creature. But my brain was as old and much healthier than I was. I understood what he meant. Oh! God! Father wants to kill me! Am I such a burden? If I am, can I help it in any way?
Suddenly there were heated and loud arguments between the two. Mother could not even dream of such a solution. And she opposed it tooth and nail. Then father suggested that I should be left somewhere at a distant place near some home so that they could get rid of me. Mother would have nothing of the sort. Father also suggested leaving me in an institution which looks after children like me. Mother didn’t agree to it either. She said she could not leave me anywhere and she would have me looked after from home only. And she made it very clear.
After this, there used to be heated arguments between them over me almost daily. I even heard them talking of divorce, the meaning of which I didn’t understand then. And then one day a few months after my fifth birthday, father left home. He never returned.
Mother was devastated. She had already left her job to look after me. Now she also lost the companionship of father and a regular income. She had to mend not only her own way, but also me. Relatives had already stopped visiting our home because they were tired of looking at me. We also had not visited our relatives since I was born.
The pension mother got from her previous employment was very meager and met only part of our needs. Mother did all kinds of odd jobs to earn a living. We rented out a portion of our flat to another family so that we could earn some regular income from the rent. I remember the first day when the new family visited us after shifting to our house. It was evening and they dropped in for a cup of tea. They came to visit me, too – the father, the mother, and a boy of about my age. They looked at me, twisted their faces in utter disgust and left. It looked like the boy was frightened to look at me. They never came to visit me after that day.
I was growing up and mother could not physically carry me. She somehow managed to purchase a wheel chair. It took several days and constant and regular training by mother for me to learn sitting in the wheel chair. I was extremely glad when I actually did that. Now I could ask mother to put me near the window so that I can watch the people moving and the vehicles plying on the road outside. It was heavenly feeling to watch the animals, the birds, the plants, and to enjoy the morning breeze and the rains whenever they occur. Earlier, though my bed used to be kept near the window I could see only the sky, the clouds, and a few flying birds. My mother, I have no doubt, was the best mother in the whole universe.
Since regular exercise was the only way to inject some sort of sense into my limbs, mother regularly made me exercise. There were exercises for my legs, hands, eyes and speech. Though I used to be sometimes exasperated at the extremely slow or almost nil improvement, I continued to undertake the exercises with mother in the hope that one day I will be able to move my hand and legs as my brain commands them. After several months of continuous training, results began to show. Movements of my hands and legs were more regulated and were more in order. I was able to speak a few words, too. With each little improvement my enthusiasm began to increase, too.
When I grew up, I began to appreciate mother more and more. She gave me a small transistor which I learned to operate with great difficulty, due to the slow and unsteady movement of my hand and fingers. When I was able to switch it on for the first time on my own and selected a station of my choice, I was in ecstasy. I wanted to dance, which I did sitting in my chair. Mother came running from the kitchen hearing the commotion. She saw my ecstasy and laughed, which had become a rare thing for her. She hugged and kissed me like no other mother would. She was so happy that she began to cry.
Later mother also got me a small TV which also I learned to operate on my own. My life began to be more meaningful. Mother left no stone unturned to give me all the comfort and all the happiness that she could. I used to enjoy all kinds of music and dances.
I am twenty two years old now. Since the day I was born mother has been caring for me. She left her job, she left attending all kinds of functions, she stopped visiting relatives and friends, she toiled day and night to make both ends meet. And for seventeen years she has been carrying the burden, which is me, all alone.
One day I requested mother to take me to a music programme specially organized for differently abled people like me. She has never said, as long as I can remember, ‘no’ to any of my requests, which were very few in any case. We reached the venue a little in advance so that she could find a seat near the stage for me.
It is then that this girl and her mother came in and occupied the next seats. I looked at the girl whose legs were deformed like mine, and whose hands were deformed, too, like mine. She must be a few years younger to me. She was also eagerly waiting for the programme to begin. Suddenly she looked at me. I don’t know what transpired within me. The feeling was nothing like anything that I had experienced in my life. She smiled in her twisted way. I smiled too.
Then the programme started.
I could not concentrate on the programme. I looked at her again. And she looked at me. It was actually by accident that our unsteady hands touched each other’s on the hand rest of the chair. The sudden shock I experienced at that moment was tremendous. The warmth that I experienced from the touch was unexplainable. O, God! What kind of a feeling is this? What is happening to me? I was thinking whether to move my hand away from hers or not. But the heavenly feeling was so strong that I decided against moving my hand. I thought maybe she would move her hand away. But she didn’t either. After several minutes our hands were clutching together. I felt we were butterflies flying in the vast sky with nobody and nothing to restrict us. We were now on the clouds, then above the sea, or on the highest of the trees. We were experiencing the most enjoyable fragrance of the world, the sweetest of moments.
We forgot where we were or why came here. We didn’t listen to the music programme. No programme can replace the feeling that we experienced during those moments. We did not even realize that the programme had concluded and lights had been switched on. We were looking at each other, smiling, flying among the clouds and over the sea.
The mothers stood up and were about to leave when they noticed that we were not moving. Then they saw us, looking at each other, smiling, and our hands clutched together so strongly that nothing in this world can separate us, completely oblivious of what was happening around us.