Showing posts with label sistah. Show all posts
Showing posts with label sistah. Show all posts

Saturday, January 29, 2011

Special Education Week - Day 5

Another inspirational story about professor Stephen Hawking who has ALS.  Lot of ignorant people might have judged him as a little boy not able to play ball or do any physical activities because he looked normal. Yet he believed in himself. The keyword to his success is believe in yourself.  To all my readers who are going through some tough phase in your life  and people voluntarily or involuntarily making you feel depressed or putting you down with their ignorant, uneducated judgement  , please believe in yourself. Every  good deed is achievable only if you believe in yourself.


Professor Stephen Hawking (Source: http://www.hawking.org.uk/index.php/about-stephen).




I am quite often asked: How do you feel about having ALS? The answer is, not a lot. I try to lead as normal a life as possible, and not think about my condition, or regret the things it prevents me from doing, which are not that many.

It was a great shock to me to discover that I had motor neurone disease. I had never been very well co-ordinated physically as a child. I was not good at ball games, and my handwriting was the despair of my teachers. Maybe for this reason, I didn't care much for sport or physical activities. But things seemed to change when I went to Oxford, at the age of 17. I took up coxing and rowing. I was not Boat Race standard, but I got by at the level of inter-College competition.

In my third year at Oxford, however, I noticed that I seemed to be getting more clumsy, and I fell over once or twice for no apparent reason. But it was not until I was at Cambridge, in the following year, that my father noticed, and took me to the family doctor. He referred me to a specialist, and shortly after my 21st birthday, I went into hospital for tests. I was in for two weeks, during which I had a wide variety of tests. They took a muscle sample from my arm, stuck electrodes into me, and injected some radio opaque fluid into my spine, and watched it going up and down with x-rays, as they tilted the bed. After all that, they didn't tell me what I had, except that it was not multiple sclerosis, and that I was an a-typical case. I gathered, however, that they expected it to continue to get worse, and that there was nothing they could do, except give me vitamins. I could see that they didn't expect them to have much effect. I didn't feel like asking for more details, because they were obviously bad.

The realisation that I had an incurable disease, that was likely to kill me in a few years, was a bit of a shock. How could something like that happen to me? Why should I be cut off like this? However, while I had been in hospital, I had seen a boy I vaguely knew die of leukaemia, in the bed opposite me. It had not been a pretty sight. Clearly there were people who were worse off than me. At least my condition didn't make me feel sick. Whenever I feel inclined to be sorry for myself I remember that boy.

Not knowing what was going to happen to me, or how rapidly the disease would progress, I was at a loose end. The doctors told me to go back to Cambridge and carry on with the research I had just started in general relativity and cosmology. But I was not making much progress, because I didn't have much mathematical background. And, anyway, I might not live long enough to finish my PhD. I felt somewhat of a tragic character. I took to listening to Wagner, but reports in magazine articles that I drank heavily are an exaggeration. The trouble is once one article said it, other articles copied it, because it made a good story. People believe that anything that has appeared in print so many times must be true.

My dreams at that time were rather disturbed. Before my condition had been diagnosed, I had been very bored with life. There had not seemed to be anything worth doing. But shortly after I came out of hospital, I dreamt that I was going to be executed. I suddenly realised that there were a lot of worthwhile things I could do if I were reprieved. Another dream, that I had several times, was that I would sacrifice my life to save others. After all, if I were going to die anyway, it might as well do some good. But I didn't die. In fact, although there was a cloud hanging over my future, I found, to my surprise, that I was enjoying life in the present more than before. I began to make progress with my research, and I got engaged to a girl called Jane Wilde, whom I had met just about the time my condition was diagnosed. That engagement changed my life. It gave me something to live for. But it also meant that I had to get a job if we were to get married. I therefore applied for a research fellowship at Gonville and Caius (pronounced Keys) college, Cambridge. To my great surprise, I got a fellowship, and we got married a few months later.

The fellowship at Caius took care of my immediate employment problem. I was lucky to have chosen to work in theoretical physics, because that was one of the few areas in which my condition would not be a serious handicap. And I was fortunate that my scientific reputation increased, at the same time that my disability got worse. This meant that people were prepared to offer me a sequence of positions in which I only had to do research, without having to lecture.

We were also fortunate in housing. When we were married, Jane was still an undergraduate at Westfield College in London, so she had to go up to London during the week. This meant that we had to find somewhere I could manage on my own, and which was central, because I could not walk far. I asked the College if they could help, but was told by the then Bursar: it is College policy not to help Fellows with housing. We therefore put our name down to rent one of a group of new flats that were being built in the market place. (Years later, I discovered that those flats were actually owned by the College, but they didn't tell me that.) However, when we returned to Cambridge from a visit to America after the marriage, we found that the flats were not ready. As a great concession, the Bursar said we could have a room in a hostel for graduate students. He said, "We normally charge 12 shillings and 6 pence a night for this room. However, as there will be two of you in the room, we will charge 25 shillings." We stayed there only three nights. Then we found a small house about 100 yards from my university department. It belonged to another College, who had let it to one of its fellows. However he had moved out to a house he had bought in the suburbs. He sub-let the house to us for the remaining three months of his lease. During those three months, we found that another house in the same road was standing empty. A neighbour summoned the owner from Dorset, and told her that it was a scandal that her house should be empty, when young people were looking for accommodation. So she let the house to us. After we had lived there for a few years, we wanted to buy the house, and do it up. So we asked my College for a mortgage. However, the College did a survey, and decided it was not a good risk. In the end we got a mortgage from a building society, and my parents gave us the money to do it up. We lived there for another four years, but it became too difficult for me to manage the stairs. By this time, the College appreciated me rather more, and there was a different Bursar. They therefore offered us a ground floor flat in a house that they owned. This suited me very well, because it had large rooms and wide doors. It was sufficiently central that I could get to my University department, or the College, in my electric wheel chair. It was also nice for our three children, because it was surrounded by garden, which was looked after by the College gardeners.

Up to 1974, I was able to feed myself, and get in and out of bed. Jane managed to help me, and bring up the children, without outside help. However, things were getting more difficult, so we took to having one of my research students living with us. In return for free accommodation, and a lot of my attention, they helped me get up and go to bed. In 1980, we changed to a system of community and private nurses, who came in for an hour or two in the morning and evening. This lasted until I caught pneumonia in 1985. I had to have a tracheotomy operation. After this, I had to have 24 hour nursing care. This was made possible by grants from several foundations.

Before the operation, my speech had been getting more slurred, so that only a few people who knew me well, could understand me. But at least I could communicate. I wrote scientific papers by dictating to a secretary, and I gave seminars through an interpreter, who repeated my words more clearly. However, the tracheotomy operation removed my ability to speak altogether. For a time, the only way I could communicate was to spell out words letter by letter, by raising my eyebrows when someone pointed to the right letter on a spelling card. It is pretty difficult to carry on a conversation like that, let alone write a scientific paper. However, a computer expert in California, called Walt Woltosz, heard of my plight. He sent me a computer program he had written, called Equalizer. This allowed me to select words from a series of menus on the screen, by pressing a switch in my hand. The program could also be controlled by a switch, operated by head or eye movement. When I have built up what I want to say, I can send it to a speech synthesizer. At first, I just ran the Equalizer program on a desk top computer.

However David Mason, of Cambridge Adaptive Communication, fitted a small portable computer and a speech synthesizer to my wheel chair. This system allowed me to communicate much better than I could before. I can manage up to 15 words a minute. I can either speak what I have written, or save it to disk. I can then print it out, or call it back and speak it sentence by sentence. Using this system, I have written a book, and dozens of scientific papers. I have also given many scientific and popular talks. They have all been well received. I think that is in a large part due to the quality of the speech synthesiser, which is made by Speech Plus. One's voice is very important. If you have a slurred voice, people are likely to treat you as mentally deficient: Does he take sugar? This synthesiser is by far the best I have heard, because it varies the intonation, and doesn't speak like a Dalek. The only trouble is that it gives me an American accent.

I have had motor neurone disease for practically all my adult life. Yet it has not prevented me from having a very attractive family, and being successful in my work. This is thanks to the help I have received from Jane, my children, and a large number of other people and organisations. I have been lucky, that my condition has progressed more slowly than is often the case. But it shows that one need not lose hope.



 Sourece : http://www.hawking.org.uk/index.php/disability

Sunday, June 27, 2010

Happy birthday my sweet little sis

As a seven year old girl, I was overjoyed with the news of your birth. There was nothing special than that.  The memory is so fresh in my mind. My mom told us we will go to leelammas house during quarterly holidays to see you. I was impatiently waiting for that moment. You understood my feeling so well even at that time, hee hee you made us come rushing to you thanks to Skylab episode. We rushed to Chennai ,so we can be together as a family even if something bad happened due to Skylab.  So we called you a Skylab baby.


 When I saw you for the first time, a special bond was formed right then, right there. You had a shiny glass head (little or no  hair unlike most girl babies in our family) with big eyes. Now when I see you drying your long beautiful hair only that glass head comes to my mind.  I begged chitha to put you down on my lap. She did courageously after all I am her first love right? I kept caressing your soft, hairless head for a long time. That was the best week of my life spending every minute with you.


 Even the sheer thought of Chitha and you coming back to our town thrilled me.  You were the soft girl that everybody adored. When I see the softness in NR, I remember you in him. I fed you(your evening snack milk bikis whenever chitha allowed me), I sang to you and entertained you. I used to run to your house during my lunch breaks just to get a glimpse of you. Thank god , Chitha and Chithappa lived closer to my school.


 I remember the morning breeze, the songs from Murugan temple on our way to central bus stand  with so much of excitement in our heart to meet and greet you in the wee hours of the morning. We got the news that you started walking when you were Chennai for a short family visit with Chitha.  I and S akka did not get a wink of sleep the previous night. We were so excited to see you. So we got up early around 4.00am took bath and ventured alone bringing Kamala along with us (hope you remember our neighbor) to central bus stand. I have no idea why my mom allowed us , a thirteen and 8 year old girls accompanied by their 12 year old friend to go alone. Though it’s scary to think of it now, it reminds me of the good old days where you let your kids go every where freely without fear unlike now. And we were used to going to school by ourselves so we went happily. We scanned every passenger getting down from Chennai bus for more than an hour and we did not see you or Chitha getting down from any of the bus. Chitha and Chithappa decided to get down somewhere else but that long walk back home without you was history. We were so sad we didn’t even talk to each other. We returned home with a heavy heart and there you were taking your baby steps on our dining table. You tiny feet adorned with kolusu and the sound it made still bring such joy to my heart. Not even NR’s first steps excited me like that.


 Then you became my shadow following me everywhere like a little puppy. You were a ribbon monster. You stayed with us during weekends. Every Monday we will be searching frantically for the all the black ribbons to wear it to school required by school rules but with vain. Kamala always came to our rescue and we ended up borrowing her black ribbons to school. You owe a big time to Kamala : ).  Following Tuesday or Wednesday we will discover all our black ribbons either tied to towel hidden under the bed or in some random hand bags (you used towel as your false hair and tied plaits using black ribbons and called it your “ chathai (aka Jadai ) or ribbon were tied around books as gift wrappers. I lost my stamp album for almost 6 or seven months and found it with couple of my black ribbon tied to it under pile of books. I still wonder how you managed to hide it there under a heavy stack of books collecting dust. I really wished we had taken a photo of you in your infamous “Chathai” or your Buddha bikshu (monk) costume aka beach towel costume.  We forgot to take a second set of clothes for you during our Marina beach visit and you came home with that costume in the city bus. I love  our family photo with your sweet diana cut hair style ( you were in 4th or 5th grade) and I was wearing a silk saree for the first time .


I am happy that you are the same old loving and affectionate little sister with whom I can share anything and everything. You were my rock during my courtship days . I couldn’t have asked for a best friend like you. Small thoughtful stuff you did for me when I was so scared of unknowns at that time. You made me feel relaxed and happy like playing our fav song in the tape recorder whenever you came to our home from school. 


CB did everything under his sleeve to convince our family which meant taking tuitions for you and S bro so he can come and meet you guys everyday. You and S bro started calling him “Master” and continues to call him so even after 19 years.  He became your best big brother too.


You have a special place in our heart and now very special place in NR’s heart. You rightly call him your son and get so angry at me even if I complain about him a bit. I am at peace knowing that my sister is there to love my son more than me. I felt so happy yesterday, when I you said that you waited so many years to receive a card from your niece ornephew and how grateful we should be for having NR in our lives. I am happy that he brings such joy in your heart like you did for me.


The special prayer from CB’s household is to send a thoughtful, simple, loving person as your partner who is going to respect, love and cherish you like we do. I am praying to god everyday to send that special guy to our family soon. More things are wrought by prayer than this world dream of.


Happy birthday kuttima . Hope this year makes your entire dream come true. Hugs and sweet kisses from us all.  


Love you


C akka.