‘Never stop believing in good and whatever happens, it is for the best’
I had a very easy childhood. I was even good at academics. I pursued engineering in college and was happy about what I was studying. It was in the second year of college that things changed suddenly.
Shenaz (center) in college, a few days before the first convulsion
Amidst submissions and examinations, I had a nervous breakdown. At that age, exams are life and death situations. That 90 per cent means everything. Within hours, the fever shot up to 104 degrees and my head hurt and I collapsed. I was rushed to a nearby hospital where I was in ICU for a week. I have no memory of what happened that night. My mother said I went cold and blank, and was frothing at the mouth.
I was diagnosed with epilepsy within a week at the age of 19. I was anxious about getting back to academics but my neurologist advised a year-long sabbatical. Eventually, I had to quit. I was on high medication to battle the daily seizures, and was experiencing fatigue and drowsiness. For a whole year, I did little, aside from sleeping. My mother was always by my side. There were seizures every single day for two years. We never stepped outside the house – not even once.
While at the hospital, I realised that I was sensitive to sound. The closing of a door, a bed creaking, or a loud hello would trigger an episode instantly. Honking of cars in a traffic jam, even lilting music at a restaurant would mean hell. Returning to her aerobics class, going out to a movie or clubbing with friends, was obviously, out of the question. While my friends were learning how to drive, I surrendered my license and was escorted around by my mother. It affected me psychologically.
My family and I tried various things to overcome seizures – from religious rituals to international consultations. But nothing worked. In 2007, Dr. Jayanti Mani suggested a temporal lobe surgery at the Sree Chitra Institute in Trivandrum, Kerala, where I met patients from sundry cultures, ages and financial backgrounds, all bound by a common thread: epilepsy. It was relieving to know I was not alone. There were millions battling the same thing I was.
Shenaz receiving an award in Trivandrum where her surgery was conducted
On Dr. Mani’s advice, I met counsellor Carol D’Souza who was the head of the Bombay Chapter of the Indian Epilepsy Association (IEA) – Samman Association. I helped as a volunteer at Samman, taught English, math and logic to younger students and organised support group meetings.
My dream of becoming a mechanical engineer was coming to an end. Once I was a little stable, I started applying for jobs. I would go anywhere and everywhere, submit my resume on every website, experienced rejections multiple times. I understood there was no point crying over the spilled milk because there was no point waiting year after year in hope that someone would offer me a job.
Earning was crucial for me on that point of time. It is not that we had a financial crunch but I wanted to be independent. It is silly when people ignore you or hesitate to provide a job just because you are epileptic.
In 2008, I started Sobo Connect (‘So’ means South and ‘Bo’ refers to Bombay). After doing some research I understood that people worked in buildings with office space of matchbox size. So I wanted to create a space for conferences and meetings that can be rented when needed and are budget friendly at the same time. The idea struck me when I was in my father’s old warehouse and that is when I decided to do something about it and turned it into conference halls.
Shenza’s first venture – Sobo Connect
I am also a health freak. Eating health was always a priority. I would grow microgreens in my house. Once I harvested some microgreens and made a salad. I took that salad to a family function where one lady asked me where the salad was from. This germinated the idea of selling salads online. I realised the market is wide. I got many interested clients too. This sounded a good business opportunity to me. I could do it myself and that too at the comfort of my home. Gradually, I started building this idea, got my licence and started selling in 2017. I received great feedback and started making good money.
I strongly believe that epilepsy has changed me as a person. It has taught me more than any university possibly could. I was awarded as the International ‘Outstanding person with Epilepsy’ by International Bureau of Epilepsy. I felt immensely proud representing India and being of some help for people fighting epilepsy in our country.
Shenaz receiving the ‘Outstanding person with Epilepsy’ award in Singapore
If I could go 10 years back, I would have said to my younger self that ‘Never stop believing in good and whatever happens, it is for the best’. I feel blessed to be of some use to other people who are going through this. Try helping others. It is very soul-satisfying and will give you immense pleasure.
My journey is a lesson and learning experience. We often take family and friends for granted and after going through loneliness, I understood the true value of these people in my life.
Usually people suffering from epilepsy are very lonely, they hardly have any friends to share or discuss anything and therefore it makes it more challenging for them. In Samman, I found a platform to share my experiences and connect with other epilepsy warriors. The very thought that I was able to help others, inspire others to learn, helped me to gain back my confidence. Acceptance and love can create miracles and I have witnessed this time and again.