Nisshaa's Story

My Life Journey or Life Living with Epilepsy

A child doesn’t want any illness in the body. She/he wants to be happy and have a normal, fun life. But this child doesn’t know everything will turn upside down at age of ten. She was a cheerful and joyful child despite having dystonia at the age of six. She doesn’t know why her left arm is shaking involuntarily. Hospital visits seem like a never-ending story in her life. Her parents thought everything went well until they noticed weird movements every night at her early age of ten. They had no clue why she screams so loud and becomes unconscious.

Blood drips from her mouth, she had bitten her tongue so hard. She vomits every food she ate out after being slightly aware of her present environment. Her dad runs to grab a bowl while her mum makes her hand as a container to hold her vomit. She had terrible pain in her head, she was not able to walk. She sleeps the whole day to recover. Indeed, it was a sleepless night for her parents.

Her parents brought her to the hospital the next day. Doctors after doctors asked her parents a million questions. Medicine was subscribed to her. She took the medicine in and had many seizures in a day. Her parents rushed her back to the hospital again. Medicine was changed. This time she unconsciously passed urine in her bed, she was eleven. The medicine was not suitable for her. Her parents again rushed her to the hospital. Medicine was changed. Her seizures were unpredictable, it was hard for her parents and herself. She is always in the emergency room, freezing, tired, hoping she will cure. She believed her doctors more than herself, they seem like heroes in her life. She forgets she is a hero too in her life.

Medicines make her sleepy. She was slower, her brain was calm. She doesn’t know how to make friends. It was a strange activity but she was hyperactive. She breaks so many things and her mum is always after her for such bad behaviour. But she enjoyed it. Her mum realised only when her daughter is stressed or depressed she has epilepsy. She was only 12 years and yes she was stressed about her school examination. How pathetic.

It was never easy to find a suitable medicine for her but thank god one medicine suits her at age 14. Her seizures were under control. She still didn’t understand what epilepsy is and how stress impacts her body so badly. She was under pressure by her school examination and not having one best friend. Teenage life was terrible as she doesn’t understand changes within her.

She changed when she entered university. Everyone welcomes her to be their friend. She appreciates everyone she meets. She loves the friendship she has with each one individually. Her friends didn’t ask any questions about her health, they enjoyed her presence. How lucky she is to have them. Dystonia and epilepsy didn’t stop her from having fun and love her life. In fact, it helps her to see the blessings in her life.

Her epilepsy was really interesting because it teaches so much about herself. It was not an illness, it was her guideline to be a better version of herself. She has an aura like a warning before epilepsy. She will stop every activity and focus on her happiness. It depends on how her body reacts to physical activity. Sometimes she sits quietly and waits until the aura goes away. It takes hours to settle back to normal. She understands her body and takes a break from all the activity. She learned this method at the age of twenty-four. It took many trials and errors to find out her way. She understood her epilepsy is unique. She depends on her medication and also takes care of herself with special attention. It was, still is a discovery journey about her epilepsy, dystonia and herself. It is part of her, she loves them all.

By Nisshaa Muniandy

March 2021