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HAVING EPILEPSY: DREAMS MAY CHANGE, DON’T LET THEM DIE
Dec 06, 2022
Dr Rekha Mittal, Pediatric Neurologist, Madhukar Rainbow Children’s Hospital, New Delhi
It was December of 2001, and I was posted in Army Hospital, Research and Referral in Delhi. Just as I was seeing my last patient, on a Saturday afternoon, the Receptionist asked if would be willing to take on one more patient; through the doorway, I could see a scared 12- 13 year old girl standing with her mother. I did not have the heart to refuse, so after they completed the registration formalities, there they sat – mother and daughter, narrating the symptoms.
Aruni had “lost consciousness” that morning, in the bathroom. When her mother found her, she was frothing from the mouth. The mother thought she had been stressed out about the upcoming sports day, and was tired because she was practicing very hard for the March past being held on the day.
Aruni , I found out, was a bubbly 13 year old the daughter of Sonali, a Biology teacher and Major Rakesh Arya , posted in Srinagar, and living in the separated family quarters in Delhi Cantt. She said that for the last 2 – 3months she felt somewhat tired when she woke up in the morning, and things just fell from her hands; she also often felt some jerks in her legs, making her feel as if she is going to fall many times in a day. She thought she was not exercising and eating enough, and thus feeling weak.
But as soon as I heard her story, I knew the possible diagnosis: most likely she had Juvenile Myoclonic epilepsy – a type of epilepsy requiring mostly lifelong medication to keep seizures under control. The EEG confirmed the diagnosis.
The next visit after the EEG , both mother and daughter sat in front of me. My eyes met her mother’s; I knew she was still trying to take it all in. And I also knew her questions, and the answers I had to give were already in my mind.
Why did it happen? It seems to be genetic;
Is it curable? Not curable but controllable;
How long will she require treatment? At least 15 years – likely for life.
What are the side effects of the medications? She may feel drowsy, or nausea, but the effects can be different in different people.
Can she go to school regularly? Of course!
Are there any restrictions on activities? Yes, avoid swimming, cycling/ driving on the road, horse riding and others.
Can she go on school trips? Yes, the teacher must be told, and please assign a buddy.
And so on….
As I answered all the questions, I saw Aruni look more and more confused. It was too much for a 13-year-old to take in. Wanting to close the conversation for the time being, I told the mother to start the medications and come after a week.
On the next visit, the mother came by herself. Her father could not come as there was Operation Parakram, and no Army personnel were allowed to take leave --- and she repeated all the questions…. And her last question was “Will she be able to become a pilot? It’s been her dream ever since she read and heard about the Kargil war women pilots”.
I had to break the news to her … Aruni could do anything --- but becoming a pilot will not be possible. She left without saying anything.
2 weeks later, Aruni accompanied her mother on the follow up visit. “Auntie, mummy says I cannot become a pilot. Is that true? “She accosted me.
“Yes, Aruni; but there are many other things you can do” I reasoned with her.
“I do not want to do anything else… I hate everyone”, she said.
I had a calendar in my room with photos of great people with epilepsy. I showed her pictures of Alexander the great, Napoleon, Jonty Rhodes, and Socrates.
“Do you know all these people had epilepsy… and that did not stop them from becoming achievers? I’m sure you will also do something great”.
Over the next year, Aruni visited me regularly, with her mother, and occasionally with her father. We had this “pilot” discussion every time. And every time I would counsel her about the many other things she could do. Major Arya, one of the most positive persons I have ever met, also seconded me. He constantly consoled and counselled Aruni about being positive and thinking ahead. Gradually, Aruni seemed to accept her situation, and seemed chirpier in the next visits.
Then, as happens in the Armed Forces, I was posted out. The last time I met them in Delhi, Aruni and her Mom seemed sad, but I promised to stay in touch. I told them the next Pediatric Neurologist was also very good, and she would be in good hands.
I joined the Base Hospital in a small place called Bengdubi near Siliguri. Initially, Aruni, wrote every week, but gradually her letters became fewer, and we seemed to move on.
Circa 2019…. I was in my OPD chamber at Rainbow Hospital in Delhi, when the receptionist said that an old friend wanted to meet me.
The lady who entered seemed vaguely familiar. She had a little 3-4 years old girl with her.” Hello Auntie, I’m Aruni. And this is Aranya”, she said as she entered the room.
It all came back in a flash – the girl with JME who wanted to be a pilot. How she found me, I wondered. And was she on treatment?
She told me she had come for vaccination of her daughter at the hospital, as she was visiting her parents who after retirement had settled in Delhi. She was buying a snack at the snacks counter in the foyer of the Rainbow Hospital, Delhi, when she saw my name in the list of Doctors, and wanted to meet me.
“Auntie, I could not fulfil my dream of becoming a pilot, but I’m helping others to become one. I run a AFCAT (Air Force Common Admission test) coaching centre. And I married an Air Force Pilot. He is posted in Srinagar. I’m still on medicines, because when I tried to stop, the jerks occurred again”, she told me without even asking.
I was so happy for her. Having epilepsy is not the end of the world…. You may not be able to fulfil your first dream…. but with will power you can build new dreams around the first one.
(All names changed)
It was December of 2001, and I was posted in Army Hospital, Research and Referral in Delhi. Just as I was seeing my last patient, on a Saturday afternoon, the Receptionist asked if would be willing to take on one more patient; through the doorway, I could see a scared 12- 13 year old girl standing with her mother. I did not have the heart to refuse, so after they completed the registration formalities, there they sat – mother and daughter, narrating the symptoms.
Aruni had “lost consciousness” that morning, in the bathroom. When her mother found her, she was frothing from the mouth. The mother thought she had been stressed out about the upcoming sports day, and was tired because she was practicing very hard for the March past being held on the day.
Aruni , I found out, was a bubbly 13 year old the daughter of Sonali, a Biology teacher and Major Rakesh Arya , posted in Srinagar, and living in the separated family quarters in Delhi Cantt. She said that for the last 2 – 3months she felt somewhat tired when she woke up in the morning, and things just fell from her hands; she also often felt some jerks in her legs, making her feel as if she is going to fall many times in a day. She thought she was not exercising and eating enough, and thus feeling weak.
But as soon as I heard her story, I knew the possible diagnosis: most likely she had Juvenile Myoclonic epilepsy – a type of epilepsy requiring mostly lifelong medication to keep seizures under control. The EEG confirmed the diagnosis.
The next visit after the EEG , both mother and daughter sat in front of me. My eyes met her mother’s; I knew she was still trying to take it all in. And I also knew her questions, and the answers I had to give were already in my mind.
Why did it happen? It seems to be genetic;
Is it curable? Not curable but controllable;
How long will she require treatment? At least 15 years – likely for life.
What are the side effects of the medications? She may feel drowsy, or nausea, but the effects can be different in different people.
Can she go to school regularly? Of course!
Are there any restrictions on activities? Yes, avoid swimming, cycling/ driving on the road, horse riding and others.
Can she go on school trips? Yes, the teacher must be told, and please assign a buddy.
And so on….
As I answered all the questions, I saw Aruni look more and more confused. It was too much for a 13-year-old to take in. Wanting to close the conversation for the time being, I told the mother to start the medications and come after a week.
On the next visit, the mother came by herself. Her father could not come as there was Operation Parakram, and no Army personnel were allowed to take leave --- and she repeated all the questions…. And her last question was “Will she be able to become a pilot? It’s been her dream ever since she read and heard about the Kargil war women pilots”.
I had to break the news to her … Aruni could do anything --- but becoming a pilot will not be possible. She left without saying anything.
2 weeks later, Aruni accompanied her mother on the follow up visit. “Auntie, mummy says I cannot become a pilot. Is that true? “She accosted me.
“Yes, Aruni; but there are many other things you can do” I reasoned with her.
“I do not want to do anything else… I hate everyone”, she said.
I had a calendar in my room with photos of great people with epilepsy. I showed her pictures of Alexander the great, Napoleon, Jonty Rhodes, and Socrates.
“Do you know all these people had epilepsy… and that did not stop them from becoming achievers? I’m sure you will also do something great”.
Over the next year, Aruni visited me regularly, with her mother, and occasionally with her father. We had this “pilot” discussion every time. And every time I would counsel her about the many other things she could do. Major Arya, one of the most positive persons I have ever met, also seconded me. He constantly consoled and counselled Aruni about being positive and thinking ahead. Gradually, Aruni seemed to accept her situation, and seemed chirpier in the next visits.
Then, as happens in the Armed Forces, I was posted out. The last time I met them in Delhi, Aruni and her Mom seemed sad, but I promised to stay in touch. I told them the next Pediatric Neurologist was also very good, and she would be in good hands.
I joined the Base Hospital in a small place called Bengdubi near Siliguri. Initially, Aruni, wrote every week, but gradually her letters became fewer, and we seemed to move on.
Circa 2019…. I was in my OPD chamber at Rainbow Hospital in Delhi, when the receptionist said that an old friend wanted to meet me.
The lady who entered seemed vaguely familiar. She had a little 3-4 years old girl with her.” Hello Auntie, I’m Aruni. And this is Aranya”, she said as she entered the room.
It all came back in a flash – the girl with JME who wanted to be a pilot. How she found me, I wondered. And was she on treatment?
She told me she had come for vaccination of her daughter at the hospital, as she was visiting her parents who after retirement had settled in Delhi. She was buying a snack at the snacks counter in the foyer of the Rainbow Hospital, Delhi, when she saw my name in the list of Doctors, and wanted to meet me.
“Auntie, I could not fulfil my dream of becoming a pilot, but I’m helping others to become one. I run a AFCAT (Air Force Common Admission test) coaching centre. And I married an Air Force Pilot. He is posted in Srinagar. I’m still on medicines, because when I tried to stop, the jerks occurred again”, she told me without even asking.
I was so happy for her. Having epilepsy is not the end of the world…. You may not be able to fulfil your first dream…. but with will power you can build new dreams around the first one.
(All names changed)
Dr.REKHA MITTAL
Senior Consultant - Pediatric Neurology MBBS, MD(Pediatrics), Fellowship in Pediatric Neurology (AIIMS)
Malviya Nagar,Panchsheel Park
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