My name is Mahesh Palan, from Mumbai. I have had epilepsy since age 14. My attacks were not under control until I met neurologist Dr. Pravina Shah, who diagnosed, treated, and guided me to lead a normal life. Today I am no longer on medication.

 

I was a founder member of the epilepsy support group Samman, where I met a very timid girl called Alpana. She had epilepsy and came with her mother unwillingly, as she felt ‘only mad people come to such groups’. I took an immediate liking to her. We would speak for hours together and love blossomed. During our courtship Alpana started working as a counsellor for epilepsy patients. She gained confidence, as she had led a much protected life. After four years we got married and our life was quite pleasant. Alpana’s health improved. We lived with our parents and she learned cooking and household work, which was quite a surprise because she was a most pampered girl by her parents. She also did a computer course. Later we lived independently and we were happy. Alpana’s epilepsy was under control. However, it was a grind for Alpana to travel over 2 hours by train and bus. She would come back exhausted, and do groceries and daily household chores. Alpana never complained much as she enjoyed doing her work at Samman.

 

Sometimes she suffered from hallucinations and as the attacks increased we had to consult a psychiatrist. She stopped going to work and hence started feeling very depressed, staying alone. Medication took almost a year to stablise her condition. A pet animal is supposed to be therapeutic, hence her loving brother Sanjay gifted her a cute looking dashund pup named “Veer” on her birthday. She was so fond of it that she couldn’t imagine life without it. She felt secure at home and her health gradually improved.

 

We had planned a vacation in Bangalore and had a wonderful time. We returned to Mumbai and celebrated Diwali with dinner and games with our Samman friends. All went off well. Alpana hugged all lady members of the society and wished them well for Diwali. This was strange as she had never done this before.

 

We went to sleep on 15th November 2012 and at around 5.00a.m a most horrifying experience of my life occurred. Alpana started snoring loudly. I just patted and rubbed her back lightly, but she continued to snore. I got up and switched on the lights to check whether she was having a seizure. I tried giving CPR as she was gasping for breath. Nothing worked. I panicked and called my brother-in-law, Sanjay, crying bitterly and telling him frantically to reach us fast. We rushed Alpana to the hospital which was nearby but the doctors checked and declared her dead. We were shocked and speechless as to how could this happen without any warning. All the support group members rushed to the hospital and couldn’t believe that Alpana was with us no more. This was the most horrifying moment of my life.

 

I later learned that such a death can happen. It is called Sudden Unexpected Death in Epilepsy (SUDEP). Alpana was 43 years old when she died and we were married for over 12 years. Although our marriage journey was short lived, with ups and downs, we had the most wonderful time of our life. Her soul was pure. May it rest in peace.

 

Mahesh Palan

Global Conversation 2014