Reader's Corner

Dr. Nadir Bharucha suggested that we consult Dr. Shorbon, a renowned neurologist in London. When we sat waiting in his clinic, I had a convulsion right in front of him. “It’s the first walk-in seizure I’ve ever witnessed,” quipped Dr. Shorbon later. He performed thorough neurological tests on me, scanned my reports, and, with Dr. Bharucha’s approval, put me on lamotrigine and Dilantin (phenytoin sodium). The first drug, a new one, is available in India. Amazingly, it costs Rs.70,000 a month in England, and just Rs.1,000 a month here, because of lack of patency rules.

My two doctors, one in Mumbai and the other in London, worked in tandem to mix and match the drugs to get the maximum effect. The side effects of Dilantin were bleeding and swelling of the gums.

If this didn’t work the next step would be videotelemetry in London, in which all medication would be stopped so that a seizure would take place, and be observed on with diagnostic tools to determine the origin of the disease.

Without sodium valproate I lost the excess weight and returned to my normal 54 kilos. All the nasty side effects vanished like a bad dream and I was alert once again.

COPING STRATEGIES

I learned to recognize an impending attack. This is called an aura which gives me a notice of 10 minutes. I feel dizzy, hazy, my fingers stiffen. The attacks can come anytime, anywhere, for no reason at all. So, although my parents are not over protective, and take me on outings and vacations, they ensure that I am never alone at any time.

Our drivers and my friends also know how to handle me during a seizure: Put a padded gauze between my teeth so that I can’t bite my tongue. Hold my hands and legs during the twitching. Remove the gauze. Call out my name and talk to me while return to consciousness. Give me a few sips of water (the attack leaves my mouth feeling like blotting paper). Massage my legs and arms to relieve stiffness. Give me something salty to eat. Allow me to pee.

One attack was in London while I was watching the play “Okhlahoma” and the aura came forth in the first act. We rushed out and I flailed out and flaked out in the lobby. The management was very helpful and wanted to call for medical aid, until my father explained that he could handle me as a doctor. They called for a cab, carried me into one and even gave us complimentary tickets for another show.

Other attacks occurred in Singapore where our friends were entertaining us for dinner…, after a 30 km, cycle ride with my father in Switzerland……, when my brother’s prospective in-laws came over for the first time…., when I went out with my brother and his fiancée Ushma for lunch at the Golden Dragon (fortunately they had got me home on time). Every incident was treated with a minimum of fuss.

HELPING OTHERS
In June we went back to London to meet Dr. Shorbon. He was pleased. The fits had lessened in frequency and intensity from three and 4 a week.

“Keep it up!”, he said.

But I was still housebound for great chunks of time. Watching TV, listening to music, toying with the computer, surfing the Net. I was oh so bored. I was even more lonely. One night, at the end of June I watching the golden globe of the sun slipping into the sea disconsolately, when a thought flashed across my mind: Here I am feeling sorry for myself but what about all those beings out there who are old, unloved, helpless, homeless, handicapped, impoverished? I have a comfortable home, a loving family, good food, ample money. What about them?

I resolved to start a club of like-minded people to help bring light into sad lives. I decided to call it Silver Line because behind every dark cloud there is a silver lining. A friend set up a web site on the Internet Explorer "http://www.tslc.cjb.nety" and I put out a message. I got press and TV publicity and – wham! – I had 150 members, who range from 15-year-old school kids to 60-year-old retired folk, from all walks of life and all parts of Mumbai. I’ve met each one of them personally and sent an inspirational quotation on the web site every single day.

After an initial meeting in my garage, where I explained to my members that no money transactions would be involved and membership would be free, we agreed to meet one Sunday a month at an institution for the purpose of entertaining the inmates. I don’t believe in dawdling!

On the 15th of August, we met at the old widows’ home at Byculla, where some 70 of us introduced ourselves to the ladies, played a game, sang songs, danced, and chatted. It was an entertaining experience for both volunteers and the inmates. We decided to concentrate on the same venue for some time so that we could build up a rapport with them. It is rewarding to have these old ladies call me “grandson”. It reminded me of my late grandparents, whom I adored and missed.

I’ve also given a talk to Bombay International School children about how to relate to old people in an institution, as part of their social service scheme, and the club has met thalassaemic children at Sion Hospital through “Make a Wish Foundation”.

How do I fund my project? My parents gave a small room as an office. Then I used all the money that I have squirreled through the years. I learned the value and self worth of earning my own money from Christmas 1989, when I got Rs.75 for doing a TV show. After which I used to sing on the Wonderland programme, on the radio, for Rs.75 a month, which went up to Rs.175. Giving guitar lessons gets me Rs.200 an hour. And I record music for my father’s clinic and for my uncle’s restaurant in Bangalore, for which they each pay me Rs.1000 a month, for a full year.

Using these resources I’ve bought a telephone line, an answering machine, and a cordless phone for Rs.10,000. I keep telephone bills to the minimum, by receiving not making calls

By the 15th of August 2000, I plan to open two more clubs in Mumbai, after which I will expand to Bangalore, where my father has a clinic.

ACCEPTING LIMITATIONS

My illness has changed my life. It is God’s will and I believe wholeheartedly in Him. I have become more empathetic with people, not only in my own immediate circle, but with those outside it. I have learned that you can never truly understand someone else’s problem, unless you are in the very same situation. So words can seem empty. It is giving of yourself that helps. I have also learned to be responsible and self reliant, to make things happen, rather than waiting for things to happen to me.

I wake up at eight, work on the club and my music from nine to 6, lunch when I’m hungry, nap for an hour, meet friends in the evenings, spend time and dine with the family, take my medication twice a day, sleep at 11 p.m.

Music is going to be my career, not just a hobby. It is my premiere silver lining. I am now totally into making a Hindi pop album which will be presented by Baba Sehgal and produced by my father’s Positive Health Clinic.

From my own experience I know that music is a great healer. New research suggests that our brains respond to music as if it were medicine. The tempo, rhythm, harmony, melody can distract you from pain, boost your mood, revive old memories, synchronize motor skills, ease stress, promote sleep……..what more can one want or need? An album will reach out to more people, which is why I am creating one.

I now lead a full life. We welcomed the millennium as a family in the Maldives and I have much to look forward to. I can’t drive, but my driving license, which expires in 2019, lies snugly in anticipation in my wallet, until I have a seizure-free period of 2 years. I’m not allowed to swim, but I now fool around in the shallows with a parent in tow.

My two gliosis are there, waiting for the day when a laser knife or a wonder drug can get rid of them. Forever.

In the meantime I’ll give the world the best I’ve got, secure in the belief that the best will come back to me.

“I have learned that you can never truly understand someone else’s problem, unless you are in the very same situation. So words can seem empty. It is giving of yourself that helps.”

As told to
ANNE DE BRAGANCA CUNHA