Finding Happiness as an Epilepsy Warrior

“Happiness can be found even in the darkest of times, if one only remembers to turn on the light.” — Albus Dumbledore

And that’s when it happened! I had my first ever seizure. It was strange, to say the least. A usual Friday morning at work meant getting an early start to the day with the Friday Training Session. I remember walking into the shower, and waking up on the floor with the shower water raining down upon me. I figured that I was just sleepy … after all, it was 6 a.m. I got dressed and reached the office to deliver the training programme for the day. For some reason, this lady (me) known as the ‘energiser bunny’ was tired that day. I literally dragged myself back home halfway through the day and spent a lot of time asleep. It was rather strange to be so lethargic despite the absence of a fever or any pain. It was many months later that I understood how lucky I was for not injuring myself in any manner during the seizure in the shower that day. Well, that was a Friday, and to me every day is a new day. I never bothered too much about the episode in the shower. In fact, I never spoke to anyone about it because it didn’t seem important.

A few months later, we had just finished lunch and for the first time in our lives, my husband was witness to something that that he has now been seeing for over a decade – a tonic-clonic seizure. He was scared out of his wits, but ensured that he held me in his arms to prevent me from falling to the ground and injuring myself. After all, what we were now dealing with was a pregnant woman who had a seizure out of nowhere! Joy, excitement, anxiety and a myriad emotions was what we were experiencing in early 2011. We had just found out that we were expecting our first child. As all expectant parents, we began planning a bright future for ourselves and the young life we were bringing into this world. I was being treated like a queen by everyone, and the truth is that I was basking in the warmth of all the attention. And now a SEIZURE! We were thoroughly confused and immediately spoke to the gynaecologist who sent us to the hospital for a series of tests including Sonography, EEG, MRI and more. Nothing emerged in the tests and we were told to simply ensure that I was in a happy environment with no stress at all. No matter what we did or how happy our world was, the seizures were recurrent. When we were told that I was now a person with a chronic neurological condition known as epilepsy, the world came crashing down around us. How does one balance the elation of being expectant parents with the fear and anxiety of a chronic condition? It is hard, but it is possible!

After the birth of our son in 2011, the seizures stopped and we heaved a sigh of relief. The medication was being tapered off and everything was moving along happily on the yellow brick road. After almost 8 months, the seizures began again. There was still no conclusive reasoning behind what caused the seizures. That’s when we found out that I was already 8 weeks pregnant with our second child. Finally, the doctors concluded that it was Eclampsia (pregnancy-induced epilepsy), much like a lot of people who experience pregnancy-induced diabetes and other conditions during their pregnancies. This is now known as new onset epilepsy during pregnancy. It is a rare condition that apparently occurs amongst 1 in 10,000 persons with epilepsy. So now, the lady who presented case studies to people as part of her profession as a mass communication professional, had become a case study in herself!

Now, if you think that this is only going to be a tragic tale, let me help dispel the notion. So far, I have only told you about HOW epilepsy became part of my life. Now let me tell you about WHAT we did about it and the things we continue to do. We are blessed to have two amazing children – a boy and a girl. Both are in the pink of health. This was based on following strict instructions from the gynaecologist and neurologist. Both ensured that all medication and diet recommended kept my seizures controlled throughout, and even after my pregnancies. So, it is critical to listen and follow doctor’s instructions. This was reinforced a few years later when we moved back to Mumbai from Pune. We found a new neurologist, ensured that we shared all details of my case history and began treatment. Once again, all was well. However, over a period of time, I became lackadaisical about doctor’s instructions and ensuring that I took my medication on time. The result – an increase in number of seizures. This led to changes in medication and dosage. Certainly not what one would refer to as happy situations. Once again, I ensured that I followed instructions of the doctor carefully and never became lackadaisical again.

Despite this, I recall a day at the office when I started to feel a fever coming on and was giving my team a hand-over brief prior to going back home. Before I even realized this, I found myself waking up completely disoriented on the floor of my cabin with a lot of concerned faces around me. My husband had been called and soon arrived to drive me back home. What followed in the car that afternoon was a series of seizures after which I woke up in the Emergency Room of the hospital. I had more seizures in the car that afternoon than I had in a year! Am glad to say that it was the first and last time that I was admitted in hospital for a week due to multiple seizures. Now that we were following doctor’s instructions, what could possibly have gone wrong?

I was formally introduced to my ‘trigger’. It is one of the most critical ones known as ‘stress’. You see, I was a marketing communication professional working in the field of public relations. This job is known to be one of the most stressful jobs in the world. And I had been doing it for 2 decades already. I am a perfectionist by nature, so not eating on time, working long hours and pressurizing myself to deliver the best was something I had been doing for 20 years. What ensued was an intense discussion with the neurologist about timings of eating, sleeping, medicating and stress. His advice was to change my profession. Change my profession? Throw away 20 years of my hard work? Obviously, I disagreed and refused to do it. In the next one year, the incidents of seizures increased in number. I decided to make a very hard decision, and gave up 2 decades of hard work and an extremely senior position in an organization.

Today, I’m proud of myself for having the courage to take that decision and having the determination to turn my life around. Why? The number of seizures and their intensity started decreasing. I started leading a healthier and happier life. In fact, I have had a seizure-free life for almost 3 years now. However, just quitting my amazing job was not what has led to a happier and better life.

Firstly, it was important for me to prioritise myself over everything else. So, I ensured that I ate on time, slept on time and took my medication on time, as recommended by the neurologist.

Secondly, I have tremendous support from my family and friends. They assist me in more ways than can be stated. My husband is truly like a rock who stands unfazed as he helps me stay strong. My young children have already learnt about epilepsy, and provide first aid to me during and after a seizure. My friends stand by us in times of need, and motivate me. Collectively, they act as anti-depressants when I’m going through a spell of depression. SAMMAN, my epilepsy support group, is an extension of my friends and family. It is my safe space that I am grateful to have been introduced to.

Akanksha with her family

Thirdly, I am open about my condition with all. This is with the intention of creating awareness about the condition and getting people to understand that persons with epilepsy are perfectly normal and capable of leading a regular life. We love life and can live it to the fullest as much as everyone else.

Yes, I’m forgetful … sometimes, more than others my age. So what? I still eat what I like and drink what I like. I indulge in a lot of physical activity. I volunteer to help out at the school my children study in. I did not just waste 20 years of my professional life. Infact, I converted that into an opportunity. Now I teach the post-graduate course in public relations and mass communication. But most importantly, I did a diploma in storytelling after having worked in large organisations for two decades, and am now a professional storyteller and trainer. I do what I enjoy the most – have a lot of fun while engaging with other people. In fact, this is one of the skills I want to use to spread awareness about epilepsy.

Finally, I realized and understood that epilepsy and the medication does include side-effects that can affect our emotions. Add to that the fact that I’m undergoing peri-menopause. So, definitely a recipe for depressive disasters. So, I reached out to a counselor for assistance when I was at the peak of my depression. This helped me to maintain a positive attitude and outlook to life. It motivated me to be a better version of myself.

I truly believe that mental and emotional health are as critical as physical health. There is a quote that comes to mind as I finish writing this story till this point. Always remember to be happy, love yourself and be you!

“You are not your illness. You have an individual story to tell. You have a name, a history, a personality. Staying yourself is part of the battle.” — Julian Seifter