Ignatius Misquitta, 56, who has been battling epilepsy attacks for over four decades, looks at how epilepsy shaped his life and humorously recounts how his seizures landed him in a soup many times. And why he wears a bracelet.
My first seizure at 12 months was so severe that the doctor declared me dead. Yet, my father gave me mouth-to-mouth resuscitation and pumped my heart, over and over. I have since survived to tell this tale. At first seizures were limited to just 2-3 a year (blank spells). These gradually worsened, into complex partial (I would walk around in a daze and conduct repetitive movements) and general tonic-clonic seizures (I would fall unconscious and get rigid and jerk).
Equal Opportunity and Support from My Parents
I am the youngest of 6 siblings. My parents treated us all alike and, in spite of my epilepsy, I took part in various sports and learnt the violin. It was a proud moment for my family and for me when I performed on television as part of an orchestra. I learnt that along with my disability I also had special abilities and that I should focus on them.
I joined a reputed college, far from home, and on the first day, whilst traveling by train, I had a seizure. I was at the doorway and my legs were dangerously dangling out. Just before entering the next station I recovered in time to pull my legs in. There was enormous pressure on my parents, to take me out of college but my mother stood firm. She simply asked if I wanted to continue with that college and I answered in the affirmative. I learned that I had choices and what I wanted was important not only to me but also my family. Each day as I left home, mom would ask God to look after me. And God has looked after me. People have always been there to help me when needed. I am convinced I have angels.
I Learnt to Laugh at Myself
I played hockey for my college. It was not out of compassion that I was chosen for the team, but my quick reflexes (my 7 medals prove that!). During an inter-college final I had a seizure: I ran around the ground swinging the hockey stick at the referee. Everyone, except the referee, knew what was happening and kept away from me. The referee got so scared, he never came back; whilst the team members and I continued the game once I recovered. I learnt to laugh at myself; if others laughed too it was perfectly okay.
After college, my first job was in Oman as a storekeeper. I was happy to be independent. One day, in the middle of a seizure, I picked around 25 steel pipes, each 6 meters long and 2 inches in diameter. During a seizure I invariably develop the strength of mythical Samson. It took four men to help me put down the pipes after the seizure subsided. At that time, I smoked 40 cigarettes a day till one day I decided to give it up and have not touched them since. I learned that I had strength both physical and mental.
After four years on the job, I started getting migraine attacks, which lasted up to three days. After investigations, the company doctor informed that I had some calcification in the brain and so I returned to Mumbai for treatment. After treatment I started working in Mumbai itself. One day on my return home I had a seizure. The next thing I was aware of was being brutally beaten by a few men outside a restaurant, who took me for a drunk. On reaching home, I phoned the restaurant owner who informed that I had broken a lock with my bare hands and then went to lift a waiter who was handing cash to a customer, demanding it from him, saying it was mine. I told the owner that I was not a drunk, but suffered from fits. He said had he known, he would have treated me differently. I learned, that wearing a bracelet, which states that I have fits and gives my name and phone number saves me from harm and protects me. It has also helped to educate many people on epilepsy, as after reading it they invariably ask.
Forming SAMMAN, the Epilepsy Support Group
In 1990 I decided to insert an appeal in the Mid-Day newspaper to form an association for persons with epilepsy. Dr. Eddie Bharucha and Dr. Pravina Shah replied inviting me for the next meeting of the Indian Epilepsy Association (IEA). I observed that while much was being done with regard to diagnosis, treatment and research, the psychosocial effect of epilepsy was given no importance. The next year we formed SAMMAN, the epilepsy support group. Being a member of the group, I learned that persons with epilepsy can help each other enormously. I have been actively involved with the Association and was Vice President of the Bombay Chapter for 6 years. I also had the opportunity to actively participate at the 22nd International Epilepsy Congress held in Dublin in 1997. I learned that people with epilepsy have the same problems and difficulties no matter which part of the world they live in.
Family Life and Employment with Epilepsy
In October 1995 I married Elizabeth. It made no difference to her that I had seizures. We have two healthy and happy daughters who perfectly understand their dad. My family is my strength and support. I learned that epilepsy suffers no barriers.
As you can imagine life, for me, has not been easy. It has been one of constant struggle and hard work. Getting and sustaining employment has been most difficult. I have been asked to leave a company because “I was an embarrassment to them”. At one time my neurologist asked me to give up my job as my seizures were going way out of control. I did so but still wanted to retain my independence. My wife and I started making and selling ready-to-eat and ready-to-cook products. I also went into direct marketing and became a distributor for Modicare products. When my seizures stabilized I started looking for a job again.
In January 2001, I started work with Vantage Advertising Pvt. Ltd. as a sales executive. I even won the ‘Star of the Month’ national award in August 2002. However the stress of meeting targets took a toll on my health. Realizing this, my superiors, asked me to focus on developing new business relations as they realized I had good communication skills. I continued with direct marketing and also started selling insurance. For one month, after work, I attended training for insurance agents and passed with 80%. I then had a short stint with Katha Mediatix joining them in May 2005. With my experience in marketing outdoor advertising, I was soon (Nov. 05) offered employment with Shlok Media. In 2008, cricket tournaments were organized by a group of outdoor advertising companies and I am proud to say not only was I part of the team but I won the best catch of the series. In 2010 I got laid off when the company restructured. I then joined OA Professionals with whom I work to date. A proud moment for me was winning The Outstanding Person with Epilepsy Award in 2004 at the Asian & Oceanian Epilepsy Conference in Bangkok. I have learnt to take both in my stride - the good and the bad.
During my peak I used to have up to 15 seizures a week, but thanks to a new trial drug I have not had a single seizure since March 2008. I have also made it a routine to rise early (5 a.m.) and go for a long walk as well as sleep early (10 p.m.) and practice yoga 3 times a week. I have learnt never to give up hope.
Looking back at my life I feel overwhelmed. Never would I have imagined I’d come this far, against all odds. It took a long time for me to accept myself but once I did, the right solutions evolved. I learned that acceptance of one’s situation solves 90% of the problem.
Many times, over the years, I have asked the Lord “Why me?” And today, I hear Him say, “Ignatius, who could have done a better job?”
(This article first appeared in Samman Association, the Bombay Chapter of The Indian Epilepsy Association (IEA).
