Samman Association

E-Stories

I HAVE LEARNED…

– Ignatius Misquitta

My first seizure 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, till I revived. I was a year old. At first seizures were limited to just 2-3 a year (blank spells). These gradually worsened, into complex partial and general tonic-clonic seizures.

In primary school, I started learning the violin. It was a proud moment for my family and for me when I performed on television as part of an orchestra. I learned 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 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 leave home, mom asks 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 played hockey for my college. Not out of compassion was I chosen for the team, it was 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 metres 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. 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 investigation, the company doctor informed that I had some calcification in the brain. I returned to Mumbai for treatment. After treatment I started working at Worli. One day on my return home I had a seizure. The next thing I was aware of was being brutally beaten by some 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, and 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, address and phone number not only saves me from harm but also protects me. It has also helped to educate many people on epilepsy, as after reading it they invariably ask.

I then decided to insert an appeal in the Mid-Day to form an association for persons with epilepsy. Dr. E.P. 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 (1991) we formed SAMMAN, the epilepsy support group. Being with this group till today, I learned that persons with epilepsy can help each other enormously. I have been Vice President of the Bombay Chapter for 6 years and currently am a member of the General Committee.

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.

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 ready-to-eat and ready-to-cook products at home, which we sold. 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 working 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. In addition to direct marketing, I have 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 where I am to date. I have learned that barriers can be overcome.

Last year 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’!

During my peak I used to have up to 15 seizures a week. I started a new drug in 2001, and for a while my seizures came down significantly but then leveled to 8-9 seizures a month. From February 2008 I have been part of a new drug trial and the last seizure I had was end of March 2008. I am keeping my fingers crossed. 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 learned never to give up hope.

In 2004 I was given the ‘Outstanding Person with Epilepsy Award’ at the Asian Oceanian Epilepsy Congress in Bangkok. Looking back at the last 47 years of 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?” Today, I hear Him say, “Ignatius, who could have done a better job?”


THANK YOU MOM!

– Sydney Joseph

Though born of Jewish parents, I have always lived in India, Mumbai to be precise. My entire life I have lived with my mother and epilepsy, and both have had a profound impact on me.

My mother is the kind of person who never gives up. She always sees what is good for me and urges me to take it on. I attended a school for Jews till the age of 10 and for the next 20 years was a boarder at the Jai Vakil School for special children. There I learnt about colour combinations, how to weave, paint etc. Though I don’t consider myself successful financially, very independent or even able to do a lot of different things, I still consider myself a contributing member to society. I paint cards and pots and sell these to friends and family.

I have accepted my epilepsy but what I don’t like about it is the fact that I am unable to travel alone. As you can imagine this limits my freedom tremendously. I have had epilepsy from the age of one – my seizures were quite severe and frequent till I was put on a new drug. Being of heavy build I tend to injure myself whenever I fall and this has made my mother all the more protective about me. I love meeting people but have limited opportunity to do so.

I joined SAMMAN the epilepsy support group soon after its inception in 1991 and attended meetings for a few years. Then once again I started attending meetings in 1999 after the E-Cell was set up, fortunately close to my home. My mother and I are both very involved with the group. We teach as well as learn art and craft. However, I don’t like it when group members talk about their epilepsy. I like to focus on other things, to joke and have fun. I am also a movie buff and can watch up to two movies a day! My mother tells me I have a very good memory as I can remember things that happened many years past, as well as the different movies and people who acted in them. I am also fluent in English, Hindi, Marathi and Arabic.

In my life, I have been depressed many a time and have found that professional counseling always helps. In fact after I received regular counseling at E-Cell my seizure severity and frequency have gone down. I now get mainly auras and can look after myself pretty well when this happens. E-Cell is my second home – I love to go there and help around whenever I can. In fact it gives me great happiness to be of help!

The constant support I receive from my mother no matter what my mood makes me what I am today. Life has not been easy for her. She is now getting on in years and suffers from severe asthma and arthritis. Often the role gets reversed with me looking after her, which I am most happy to do. Yet it is her jolly disposition and positive outlook that keeps me going.

The Jewish proverb ‘God could not be everywhere and therefore he made mothers’ rings so true.

If you would like your story to appear here email it to ecellin@yahoo.co.in

1 Response to "E-Stories"

Eveen an EPILETIC can achieve this

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