My Life with Epileptic Seizures

Epilepsy is a chronic neurological disorder that causes recurrent seizures or convulsions. 

The cause may be genetic, brain injury, or infection. Common symptoms of epilepsy include seizures, loss of consciousness, breathing problems, anxiety, depression, sweating, headaches, and stiffening of the body, among others.

I had read, and heard, but had not seen this condition from close. But then one of my nephews was diagnosed with epilepsy. I have seen have seizure attacks and fall just like that. Can you imagine how frightening that can be?

It has been six years now, and he is living with it. I have a lot of empathy for him and also for his primary caregivers, his parents. It's painful from so many fronts. Emotional, social, financial.

Yesterday while I was talking to him, I told him that he is a warrior. He did not choose this condition, but he has to live with it. I encouraged him to share his story so it can raise awareness.

He immediately sent me a story about his life with epilepsy that he had written earlier for a school project. I am sharing it here so others can learn from it.

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"Hi all,

I am not a writer. I just want to write about my life. I was born in 2010. I was born 4 kg 600 gm wt., a chubby baby. Everything was happening nicely and smoothly. I was enjoying my childhood with my family, cousins and friends.

I am left-handed from birth. I eat, write, hold everything in left hand. First my parents thought it's normal. When I ate in left hand everybody asked about it. Then my mother explained how a person is being lefty or righty is controlled by our brain structure. There are many people also left-handed. Famous persons like Leonardo Da Vinci, Barack Obama, Bill Clinton, Mahatma Gandhi, Narendra Modi, Ratan Tata, actor Rajinikanth, Sachin Tendulkar, Sourav Ganguly etc. are also left-handed.

It was year 2019. At that time, I was studying in class IV. It was a very scary period for all world. Coronavirus is a virus that caused a global pandemic. Lockdown were imposed to control the spread of the virus. The pandemic has affected the global economy and daily life. Schools were closed from mid-March 2020.

I am not writing about Covid-19. A turning point has come in my life. At that time, I was just 10 years 5 months. It was month of December 2020. Some abnormal symptoms were found in me. I shook my head for seconds, sometimes minute, lost my consciousness. MRI (Magnetic Resonance Imaging) test was done. Seizures medicines were prescribed by doctor. I was taking medicines. Dose was increasing time to time. Doctors also changed. But there has been no improvement in my condition. 

After 6-7 months a new problem started. Suddenly I fell down backside several times a day. But there was no serious injury. So, it was manageable. I belong to a joint family, so besides my parents, other members also take care of me as it was a long holiday for Covid-19 and other family members were also stayed at home.

There are no facilities for my check up in Odisha as it is a severe neurological problem. My doctor suggested to go Dinanath Mangeshkar Super Specialty Hospital in Pune (Maharashtra). We had gone there twice. At that time, we visited Mahabaleshwar temple (a 5000-year-old Shiva temple), Panchganga (from where 5 rivers started), Shaniwar Wada Fort (a haunted place), Ranganath (Shivaji's birthplace) etc.

In the second visit I faced language MRI SEEG test etc. to find final what my exact problem was. In this test the doctors detected I have severe problem in my head and suggested for surgery because no medicine were responses. Now I am waiting for surgery for this problem.

For this problem I am living a type of prisoner life. My life was changed. I cannot go outside without others. My favorite cycling has ended, playing cricket, moving with friends all are ended. I cannot participate in school's annual day, sports, picnic etc. I wear a helmet when I go outside from home sometimes at home also. It creates great problem for me. I cannot feel comfortable with it. 

My friends avoided me for this problem. They thought it was happening due to ghost or mental illness. Even they thought it's a contagious disease. They did not eat my food in fear, but others are sharing with each other. I was sad about it. 

But at last, they understood the reasons and accepted it. They helped me and saved me many times. My parents had to explain in family functions, relatives, public places several times when seizures attacked. Now almost all people of my surrounding know and understood me that it is not any disease but a neuro problem.

Taking medicines for a long time has made me weak. It affects my sleep cycle. It causes under eye dark circle, and hormonal imbalance. Sometimes I suffered severe headache and excessive sweating. After seizure attacks, I feel exhausted and sleepy for long hours. It also affected my study and exam results also. I know, I will not be able to drive, with these limitations.

Life is not easy for me. But I have never lost hope. My parents are always with me. They gave examples of others like Stephen Hawking (physicist), Helen Keller (disability rights activist), Sudha Chandran (an Indian dancer with prosthetic limbs) etc.

I have faith in God that one day I will recover and fulfill my dreams."

I hope, the story from a young epilepsy patient made a mark on you. Please be grateful for your life and be empathetic.