Sharing Stories Is Sharing Hope

Epilepsy can start at any age and can come in any form. I am 49 years old and had my first seizure at the age of 41. I was walking down a road and suddenly my body became stiff, and I fell flat on the floor, badly injuring my lips and teeth. I was confused about how or why it happened. These episodes continued, followed by several rounds of hospital visits and diagnostic tests. Finally, after about three years, an epileptologist concluded that I had epilepsy. He called it “startle epilepsy” or “drop attacks.”

I have fallen 73 times in the last eight years. I know this precise number since we maintain a log of seizures, triggers, reactions, medicine changes, etc. The fall is unpredictable and sudden, giving me no time to react or brace for it, and the frequency of episodes varies. Sometimes the next seizure occurs after 15 months, sometimes three months, or sometimes two days. By now I have taken blows on most parts of my upper body, especially the face. The falls are accompanied by slight convulsions and incontinence too. 

I am on a multi-medicine regime which has helped. Apart from medicines, I try to engage in physical activities every day which elevate my mood and help with my condition. While I can deal with physical injuries, it completely batters me mentally. I have developed extreme fear and anxiety of moving around, especially after a seizure. I try not to go outside alone and always wear a face mask to prevent any more injuries on my face. I wish there was something I could do to protect my head.

I am extremely fortunate to have the most supportive and loving family. Epilepsy has brought us all closer and has taught the kids to become more independent and compassionate. It has also helped them to understand the importance of mental health. Being self-employed along with my husband gives both of us a lot of flexibility with our work schedules.

I feel that God has been kind to me. There are several physical and mental conditions people struggle with. I am filled with gratitude to know that my epilepsy can be managed. Each of us has our share of struggles apart from illnesses too. If you have epilepsy, accept the fact that you have it, embrace the restrictions it puts on your life, seek support from your loved ones, and live your life to the fullest possible.

When I read stories of other Epilepsy Warriors, I learn a lot about how people manage their condition and that gives me hope. I wish there was an active online support group like this in India where people could exchange local knowledge and resources. It would help a lot of us.