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The Ghost Of Epilepsy! A Story On Offering Compassion

We had an appointment at 4 PM. Usually, I visit him in case of Ira’s epileptic emergencies in a panic state! We settled in the clinic. We were the second one to have arrived, someone was sitting at the opposite end.

[In India, on 17th November, we observe National Epilepsy Day to create awareness and dispel misinformation and superstitions around the condition.]

It was a Friday.  Ira and I arrived at the doctor’s (Ira’s routine neurologist) clinic at around 3.45 PM. We had an appointment at 4 PM. Usually, I visit him in case of Ira’s epileptic emergencies in a panic state!

This time it was our regular 3-month follow-up with Ira accompanying me, excited to meet the doctor. We settled in the clinic. We were the second one to have arrived, which meant the second one to get in and wrap up by 4.45 pm.

Someone was sitting at the opposite end. It was us, the man at the corner, and the receptionist there. I did not pay attention to the details, until he suddenly popped up his question in Hindi, slightly uncomfortably, bending forward. No wonder it was the patent question asked every time —

“Since how long has she been like THIS?”

I do not like being asked any personal questions by strangers. I do not happen to take it casually.

Why can’t people mind their own business? What will they achieve by asking such random questions and entertaining themselves in the waiting area? With a deep sigh and forced smile, I replied—

“Since she was 1 year old, now she is 10 years old”.

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The receptionist suddenly blurted in Marathi, “He has come for the first time here.”

“Oh, is it, where is his kid, the patient?” I asked.

“He is the patient,” she said.

Hmm, a young boy sitting there cringed with a scared expression looking at me as if wanting to talk more, share more. He did not understand Marathi, he was born and brought up in a village near Patna.

Seeing him fidgeting with his fingers, and now that he had already asked me about my daughter, I continued the chat, “How are you?” as if he was waiting for me to continue the conversation.

“I am scared, madam. I got seizures last week at my workplace. Thankfully, there were some 10 people around who helped me in recovering and rest. This is the 5th major seizure attack I have got in the last 4 years. Some ghost has captured my mind and body. I am scared it will strike again.”

“How old are you?”

“22 years old. I have come here for a job. I am a waiter at a nearby restaurant. There are no jobs in my hometown. My father is calling me back due to the convulsions. I get them intermittently. This time it was a big one. I got this doctor’s contact from the internet. Visiting him for the convulsions, the first time for me. It is high time I check with someone about it.”

Surprised, I asked, “For 4 years you are getting seizures, and you did not consult any doctor to date?”

He assumed it would pass away, the ghost would somehow leave his body and he will resume his life. His parents are concerned about his marriage.

He is now scared to go anywhere alone, what if the ‘convulsions’ ghost strikes again for no reason? Will anybody help him at a new place if he falls — on the road, from the train, in the fire — convulsing? Will he be required to go back and not work to earn? How will he support his family? For how long he will live?

I clearly did not know what to say to him. He was full of unknowns. Serious unknowns, fearful ones. For sure, I could NOT say—

“Everything will be alright, don’t worry!”

This sentence and the surrounding attitude always seem like a toxic positivity, to me. I have observed this many times happening to me.

Whenever I am in a deep mess, all I want to NOT hear is, Everything will be alright!

It is always a lone battle to bring up the mind and heart to re-start again and get up from the mess. Everything will be all-right only when we put in conscious efforts every day to make it ‘all right.’ It takes a lot of work, planning, executing, failing, trial and error on our part to survive the mess.

I usually have blank expressions on my face when I get to hear the “Everything will be alright” preach from others! Because I know what I am going through, I know exactly the loads of effort that will be needed to keep floating, and I know the depth of the situation I am in.

In the end, you must fight your battles, no one will bear your pain!

I could feel his fears, they were like many of mine. All I could say there was—

“I understand, this must be difficult for you. But I am sure you will figure out something. My daughter and we, together, are in the process too of figuring out to deal with our ghosts every day!”

Ira was sitting right beside me listening, smiling at him. For the first time, a random stranger’s chat ended on a positive note. He was called inside to see the doctor before us.

As he got up, he smiled at me and said, “Looking at your daughter, she is so happy, talking to you — I somewhere feel less scared. Let us see what the future holds for me!”

“Take care!”

Image source: Disant_S from Getty Images

Note: If your near and dear ones, or someone you know has shown symptoms of epilepsy or has had seizures, please take them to a doctor.

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