Reader's Corner

So even though my eighteenth birthday has slipped away within a welter of doctor's tests and medication. I try to dwell on the silver linings. There have been fun-filled family holidays, I have focussed on a career and started a club. I've dropped out of college because I'm not allowed to over-exert or tense my mind. But never mind. I've always been a positive guy; my illness has made me all the more so. I guess I have positive genes.

I was born on the 20th of February, 1981, in Mumbai, by caesarian section, although I was somewhat underweight. My parents, homoepaths Nalini and Mukesh Batra were pleased to have another son to complete their family. My brother Akshay is three years my senior.

I plumped out but remained tiny, so everyone called me a cute chubby cherub. Even today I'm just 5ft 3" tall.

When I was 21/2, I used to visit my downstairs neighbour, Salome Roy Kapoor, to tinkle on her piano. One day Salome told Mom: “Come and see what Pranav is doing!” My mother tiptoed in and discovered that I was picking out nursery rhymes. It was difficult to find me a piano teacher because I was so young. At last pianist Maroukh Engineer took me over and taught me theory and practicals, although I was never cramped by exams.

At five, I appeared for Campion School admission. After identifying numbers, colors, and such, the principal, Father Hilary Miranda put a tray of chocolates on top of the cupboard and said: “Go get them, son. If you do they’re yours.” The cupboard was high and I was very small. And I did love chocolates. I noticed a row of drawers, so I opened one and clambered on it, opened the next, and so on, until I reached the top. I came down, with the chocolates, on my drawer step ladder, with a huge triumphant grin. Fr. Miranda smiled: “Well done, my boy! Welcome to Campion School!”

I had the best childhood a kid could ask. My parents both busy doctors (they run the Positive Health Clinic), took us with them everywhere, from parties and plays to picnics. If we were not invited they refused to go.

Talents Galore

When we were little, my mother used to see patients at home from 9 a.m. to noon, after which she’d would spend time with us doing craft, clay modeling, creating whole mock villages, and railway stations. Dad would return at sevenish and devote time to us. Together they encouraged Akshay and me to think independently and develop our own resources. Akshay chose to follow in their footsteps, study homeopathy, and got engaged to a homeopath. I did not. Akshay unlike me is more studious, has more friends, and is into sports. We share a tendency to simmer and brood, to enjoy one another’s company.

As I grew I got more involved with music. One by one, I coaxed my parents to buy, and eventually they had to engage a tutor for (hold your breath) 11 instruments – piano, harmonium, tabla, box guitar, tampura, electric guitar, key boards, banjo, drums, harmonica, and now the violin. I’d compose my own lyrics and music, too.

I won 55 certificates and 28 medals in school for Western and Indian, vocal and instrumental, classical and pop music, for English and Hindi elocution.

Actually, I was the darling of the school because of my size and shape. I am also a bit of a clown and delight in making people chuckle. But then, as now, I had my serious side; I was president of the school Red Cross unit.

Epilepsy Strikes

The only problem was that I used to get viral fevers on and off, although nobody, not even me bothered overly much about them. When I was 10, I had a convulsion at six in the morning, in my sleep. My brother, who was studying in the same room, realized what was happening and roused Mom and Dad. It was a one-minute epileptic seizure which is caused by an inappropriate burst of electrical activity in the brain. We had to know why it had happened.

Bewildered, because I felt quite well, I was taken to the late pediatrician, Dr. S.M. Merchant, who ordered a CT scan which showed a gliosis (scar tissue) at the back of my head, probably due to an injury in my mother’s womb. This strange word was identified as the culprit.

Dr. Merchant put me on Mazetol (carbamazepine) which had the most horrendous side effects. My skin itched, was inflamed, and then peeled away, just like you can remove the skin off an onion. I was not allowed to scratch, as this would worsen the condition. Although I was taken off the medication, it took six months to settle.

There was a silver lining. I was allowed to wear a full sleeved shirts and long trousers to school, just like the school captain, which made me feel very important. Nobody teased me but I was smilingly called Junior Captain. So I managed to forget about the affliction.

My new medication was sodium valproate and since I didn’t have any more attacks for the next three years it was stopped. “Some children just get one stray attack,” said Dr. Merchant. As it turned out his optimism was misplaced.

But then I started running a temperature which relentlessly took hold of me for, say, two years, with a respite of one or 2 years, and then back again, to date for 2 years. My father sent me for every test under a hospital roof – blood, chest X-ray, sinus X-ray, abdominal X-ray – treated me with all kinds of pills, but the fever persists, like my shadow. When it touches 101 degree, I feel fatigued and lethargic; otherwise, I guess my body is used to it. Everybody gave up trying to figure out what caused my fever, so it is called Pyrexia of Unknown Origin (PUO).

While I was in Std. VII, I felt that I didn’t have the time to pursue my music, do school projects, and cope up with the ICSE curriculum. With my parents’ consent I changed over to St. Xavier’s Boys Academy, which is an SSC school where the work load would be lighter.

However, in my new school, in Std. VIII, I was more absent than present, because my fever hardly left me. I passed the class, but dropped out of the school and did my SSC privately, managing to secure a decent sixty-plus percent.

By now, I was completely into music. College would be a major drawback. I decided to work towards my HSC privately. The fever had also returned.

I celebrated my 18th birthday quietly. I’m not into discos with loud music and cheek by jowl bodies. I prefer one-to-one chats, and have very few friends, perhaps because I am not a regular student. Anyway, I was thrilled with my driving license and took my pals for a spin.

Complications

A month later, I had a major convulsion in a series of muscular spasms. I had been working on my music, on a new professional software programme, till 3.30 a.m., with the idea of making my own album with my own material. This time it happened at 4 a.m. and once again my brother was studying. It was what is called a Grand Mal attack, with intensely jerky limbs, involuntary loss of water, and unconsciousness. I took nearly an hour to open my eyes. I didn’t know where I was. My body was as rigid as puppet and I couldn’t move except for my head and eyes.

I vaguely remember voices calling, “Pranav, Pranav”
“Don’t worry. You’re at home with us”
“You were working on your music.”

I couldn’t answer them. My mind was a total blank. I couldn’t remember anything except that those three people around me were my family. Then I fell into a deep sleep. When I woke up there was an intense feeling of exhaustion.

They took me to Dr. Nadir Bharucha, neurologist, who asked for a series of blood tests. I am terrified of blood, but I lectured myself: “I’ll do it. I have to. There’s no point in moaning and groaning.” There was an EEG, CAT scan, and MRI too. Another gliosis showed up on the left vertical side, bang on the speech nerve, which is why after the attack I couldn’t speak for a while. “It was probably there all along conjectured Dr. Bharucha, “But was activated by the hormonal changes of adolescence.”

My scar tissue can’t be removed by operation. Medication is the only way to control the epilepsy.

Dr. Bharucha put me on sodium valproate which had helped me the last time. But this time it triggered off symptoms that plagued me more than the epilepsy. I bloated out, couldn’t remember much, not even my music compositions, the simplest spellings, or sums, I lost my balance and tripped all over the place. My fingers trembled so much that I couldn’t play any instrument. I used to sleep for 18 hours a day, literally waking up only for my meals. Decreasing the dose brought about more attacks.

“The reality of having a fit or seizure, as doctors was prefer to call them – is more frightening for those who witness them than the victim.”

The reality of having a fit – or seizure, as doctors was prefer to call them – is more frightening for those who witness them than the victim. To date I have had more than 60. My limbs twist and jerk, I froth at the mouth, I pass out, my limbs become rigid.