Sturge-Weber

​I am Shruthi Das, I have Sturge -Weber’s. And please don’t pity me; I have had enough of that already. Being of a gender that demands kindness I would need to reason my rude going. Well, let me explain: Some prefer themselves to be crippled than being perfect with all their faculties. They think the pity people show on them and the sympathy in their eyes is too soothing and gratifying to gamble an arm on that. They are right. I liked the attention that I got and when people only talked nicely to me. Never scolded, never punished. But I have had enough of my fill of it. I am fed up of these soothing eyes, I want to see those blazing red ones and. those twinkling with sly. I don’t care if this is what the sorry situation my condition begets, it’s discriminating all the same. I want to be treated the way my actions deserve. I want to be scolded when I do wrong, appreciated when I do right, laughed at when I fail, smiled at when I joke. But whatever I do, I am pitied at. It’s all monotonous. Change is what gives one’s life meaning.

​The name, Sturge-Weber, it is a very enticing name. I wrote it forty eight times before I could remember the first word. Dr. Rahul of the PHC, the doctor’s place as we call it in our village, had said me the name. I had him write the name on the back of my prescription, it was a mouthful to remember just by listening to it once. Though my parents knew I was diseased when I had a huge red birthmark on my left forehead at birth and started throwing fits by three months of my life, they really didn’t give me a name. They didn’t know of it themselves. My mother used to say I was cursed and my father, that I was the most beautiful lady in the world. He calls me a lady even when I am just eleven, he believes being a female is enough responsibility to be mature and so calling a young female a girl is undermining such a feat. Doctors regularly change at the doctor’s place, some say they change yearly but others believe it is every third year. They are both wrong. I know because I am a regular there, I visit the doctor’s place every few months to get my brain checked and medications refilled. There are two types of doctors there, one big doctor who is superior and older, who has been the same from the time I can clearly remember and a small doctor who change yearly. Dr. Rahul was a small doctor. Only small doctors used to see me, I rarely saw the big doctor. When I was old enough to understand the implications of my condition, it was the big doctor who was on duty to break the news for me, during one of my routine visits to get my brain checked. It is funny how doctors by examining my limbs and face are able to tell what is wrong with my brain. I didn’t ask them about it, but I think everything in our body is connected to one another and what a doctor does is find which connection is shorted. So being at one end of a connection one can know whether the other end is working properly or not. I did ask Dr. Rahul once about it as he was very friendly and enthusiastic. He said I was right and that brain was the master-control of it all and whatever or wherever you checked the body, it said something or the other of the brain. He also said, “It’s just not the body but the world is connected and you are the master-control of it”. I thought by you he meant himself as there is no way a cripple like me could do that. It’s one thing to always believe in possibilities and never think of “I cannot do it”, but what I have come to believe of this world is there are gifted people and there is luck, and I am one of those who don’t have both. It’s most important in life to know one’s limits. People never accept the fact that there are gifted ones, they are blinded by “hard work beats talent” but the same people accept that there are damaged ones like me. What they ought to understand is that as there are people crippled from birth, there are people who are gifted from birth. And that should not be a hindrance to achieve heights, in fact, who accept such a thing are the ones who succeed and most of the gifted ones just wear away, just surviving from whatever the gifts they have than to hone it and thrive.

​Even though my mother always says that I am the cursed one, I know she doesn’t really believe what she says. It is just that as my father is too nice to me it becomes imperative that someone has to balance all that kindness with just the opposite, of which responsibility my mother took. I actually liked her for that, it was a break from all the niceties people ushered on me, all the time. If I had a say in it, I am sure she loves me more than my father. It really takes much strength to despise love under the guise of hatred. Every time I went to the doctor’s place they would ask if my fits where under control. I really didn’t get what they meant by ‘under control’, it was just a routine question every doctor asked, even Dr. Rahul, which promptly would be followed by a quick nod of my mother. My father never accompanied me to the doctor’s place. The small doctor would later give the prescription for my next few months of Phenobarbitone, a white tablet tasting bad which was to be taken at bed time every day. And yes, I had to write the medication name a hundred and five times before I knew it by-heart. I have a poor memory and it takes me a long time to understand what I read. That is why I write everything so many times that I remember it by-heart. I never understand what a sentence means without analysing it for long enough. If someone says,” I went up a tall hill”, I really don’t get what they mean. I have to contrast all the adjectives before I understand it. I have to say myself,

“He didn’t go up a flat hill”

“He didn’t go up a tall mountain”

“He didn’t run up a tall hill”

when I really get he meant that he walked up a tall hill. That’s why I learn slowly. But I never stop, actually it’s my little game to avoid boredom as I don’t go out much often to my friends or talk too much with my neighbours. I have a red patch on the half of my left face that makes me feel insecure to go out with that face. Some advise me to not care of what people think, but those are the advices that are just too enticing in words than in action. Being so, not caring for what people think, is like not being a human at all, a social animal. Dr. Rahul had said the red patch was part of Sturge-Weber. It’s ironical what bearing the name of one person can have on other’s, an unrelated person’s, life. He had also that I would learn slow, have problem with my eyes and get ‘fits’ sometimes. I actually am accustomed to it and don’t have much problem with them: I rarely go out, so the red patch problem is solved. My eye has never bothered me, they said it would turn red and burn, but it never has. I am a slow learner, so I get up late till night so that I will finish what I have started in the slow pace I read and I write a lot of what I read. I get ‘fits’, I really don’t know much of it. I fall unconscious and the next thing I remember is I am tired, I sometimes get hurt when I fall and bite my tongue in the stereotyped way people describe of fits, but they are just a small hurt, not too deep. Mother used to say I was not falling unconscious earlier when I had fits, I only used to shake my right limbs haphazardly for a few seconds and I was conscious all the time. But I was too young to remember of it now. And that part of the problem is also solved except that I had small gashes sometimes which has now healed leaving behind scars as trophies. As long as you accept something, it really doesn’t bother you. The only thing I don’t accept now is people’s pity and that’s the only thing that bothers me. I want to be scolded for my mischief and punished for not doing my homework just like a normal child is treated. But teachers always forgive me.

​I know it sounds silly but my ultimate aim is to be the first rank holder of my class for at least once. It really doesn’t bother me that I am studying in a class three standards below my actual age, but I at least will compete with people of fully working brains. Doctors had always asked me to get enrolled in a special school. My father wouldn’t agree, he admitted me to a normal school, but a few years late. To be true, even if my father had agreed on a special school there was none in our village, the nearest could have been in Bangalore. I really don’t know if there is a special school in Bangalore but my father says it’s a city hundred times bigger and a thousand times more developed than our village and such city, I believe, will surely have one. Father always uses a number, that too in rounded figures, when comparing. That is something which comes by being a farmer.

​So that is the aim of my life; to be first in class for at least once. The only thing that is stopping me from achieving my goal is the fits. It earlier was not a bother to me, but it is now growing with time tiring me more and coming on much frequently than before. I think it is steadily growing in me, eating at me. As I said earlier too, please don’t give me your sympathy but your blessings so that I could achieve what I have been after before I am too tired.