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– Suneeta Singh

I take my epilepsy as a blessing in disguise this is my feeling from the core of my heart. Only because of epilepsy I have become a person who can understand another pain and only because of epilepsy I know humility. Again because of epilepsy I learnt Reiki and yoga and joined the Indian Epilepsy Association and Samman.

At the age of 3, I had my first Grand mal Seizure when I was suffering from high malarial fever. But thereafter I kept very well – till the age of 11, when suddenly one fine day I urinated in the classroom. This occurred for two consecutive days. Thus my principal wrote a letter to my dad bringing to his notice that his child was suffering from some illness and required a checkup. As a result dad immediately took me to the doctor and my EEG was taken.The diagnosis was epilepsy and treatment began.

However, even though I sincerely continued with my drugs, I kept getting complex-partial seizures though not as often. When I was 13, I returned from Nigeria to a small industrial town in Orissa in India where my medicines were not available. Moreover, by then I had already recovered from my epilepsy in the sense that I stopped getting seizures for about a year. When my drugs got over, I asked my dad for more but he told me to discontinue the medication as I had stopped getting seizures!!! Thus after sometime, one fine day during the summer season when it was extremely hot, I was typing at home and suddenly had a grand mal seizure.

I was immediately taken to a Neuro-physician in Orissa who told my father he should not have stopped the drugs without consulting a doctor. I restarted medication and simultaneously continued with my studies and sports activities as well. Although my studies did get affected a little, it was mostly due to the change of Board rather than epilepsy. Even in sports I always won the badminton tournaments from my school days till the college level.

My dad had a transferable job due to which I went through different systems of education till the time I completed my 12th. Finally, I graduated and post-graduated in Mumbai. In Mumbai I lived in a hostel as my parents were living in Tarapur. The seizures still continued but the support I got from friends was amazing. When I was doing my Bachelors, I found that my forgetfulness increased. And during my final exam in the 2nd year of my Masters I had a seizure and left the final answer completely blank as I couldn’t recollect anything even after recovering from the seizure. But still I aimed high and never considered myself an epileptic.Nor did my parents treat me differently. As a result I developed the feeling of being most normal which I feel even today.

After completion of my Masters in Geography with specialization in Cartography (map-drawing), I wanted to become a cartographer, (there were opportunities available at the time (1990) in Hyderabad) but my parents prevented me from going, as I was having seizures. Thus, I began teaching, but there too in the school staff room one fine day I met with a seizure and urinated there. After this humiliation, I did not want a another occurrence especially in front of students, so I resigned from the job.

I then started work at a recruitment agency and worked in the profession for 15 years and ultimately began practicing from home on my own. Recruitment demanded me to remember the entire profile of thousands of candidates. We had to have this knowledge at the tip of our tongue so as to come up with the right match. But I had difficulty in remembering the candidates names. However, I never gave up. Instead I started maintaining a diary. Later on when personal computers became available I let the computer do the search work for me.

During my professional career I worked at Nariman Point, Mumbai and stayed at Tarapur. I commuted daily from Mumbai to Tarapur – a 6 hour journey to and fro for nearly 7 years! Whilst travelling I did have seizures, more so during the menstrual cycles and still I had to go to work.Thankfully I enjoyed my work. Also I hadn’t ever informed anyone in my office that I have epilepsy as I knew that the job was demanding and they wouldn’t employ me if they knew. However once I did have a grandmal seizure in the office. When my boss suddenly saw me fall to the floor, she called my home and learnt from mom that I have epilepsy. She immediately sought an appointment with Dr. Singhal under whose treatment I was at the time. Thereafter, dad reached Bombay and collected me and took me home.

One day on my way back home, as Boisar station was approaching I was getting ready to alight when I got a grand mal seizure and fainted in the ladies compartment. It was around 8.30pm when there happened to be just a few ladies there. By the time I recovered from the seizure I saw myself surrounded by railway policemen at the station platform after Boisar. But this was a place which didn’t have a high frequency of trains making the return journey difficult. When, I got back to my senses I saw a sandal and an onion lying beside me the mythical cures for seizures! Ultimately, a policeman got me back to Boisar station and handed me over to my dad who had by then come to the station. I believe even more firmly that God helps those who help themselves.because my dad was informed about my seizure from a girl who found my contact number in my bag and  called my home from a railway station where she got down (there were no mobile phones in those days).

Once again as I was returning in an auto rickshaw to my colony in Boisar (Tarapur), I suddenly had a grand mal seizure. But the auto driver came to know only when he turned around to see me at the last stop. Then he searched my address and brought me safely back to home. Moreover, the next day he came to my home to ask about my health as I had badly injured my left eye – rather I was lucky to have saved myself from losing the left eye. Being shattered by such an accident I decided to discontinue with service. But, when I met Dr. Pravina Shah under whom I was getting the treatment, she asked me to get my eye tested, and seek a months leave and then resume duty again. I went to my office and showed the doctors letter to my boss, who after looking at my eye granted me, 2 months leave!

Finally, I began practicing recruitment from home, as my seizures had drastically increased in frequency. Previously, I used to get only 7 to 10 minor seizures per month and 1 major seizure during the summer only, but now I was getting major and minor seizures often. My medicine dosage had also increased, all kinds of medicine were tried, till Dr. Pravina Shah suggested I be evaluated for surgery. Fortunately it was found that mine was a suitable case for surgery and so in early 2006 I had the operation.

A month after brain surgery, I began with my profession of recruitment. But this I could practice for only a month as my mother was diagnosed to be suffering from the last stages of cancer. Being the only family member in Mumbai, I decided to discontinue with my work and get her treated at Tata Memorial. Within a year we sadly lost her. After that I did not feel like living alone and so shifted to Pune where my siblings live. But sitting idle wasn’t my cup of tea. I was medically fit as the seizures had drastically reduced after surgery. I was at crossroads again, but it was Dr. Urvashi Shah my neuro-psychologist who suggested I keep myself fruitfully engaged; that the empty mind was a devil’s workshop which was leading to seizures.  I too found that psychological stress brought on seizures.

 I realized I enjoyed teaching and it was a less stressful option. Therefore I did a Bachelor in Education. Now I teach in a CBSE School (Delhi Board) in Pune. As I now get seizures only in the midst of my sleep, I have again opted for this profession. Although financially I am not doing as well as I did earlier, at least I am not dependant on others. One lesson I have learnt is that all professions are good only one should learn how to enjoy them.

I have been asked how I have overcome so many difficulties and have to say that:

* Positive thinking is a must. Only then more than half your illness is cured.

* Nothing is impossible. Keep trying till you achieve your goal. Trials makes a man stronger, perseverance helps him achieve success!

Samman Association, the Mumbai Chapter of Indian Epilepsy Association, is dedicated to empowering people with epilepsy and their caregivers.







Samman Association c/o Adapt India, 1st floor KC Marg, Bandra Reclamation, Bandra West, Mumbai, Maharashtra, 400050.