In the Lavender Light: Sheetal's Epilepsy Narrative

India Goes Purple was started to provide people with epilepsy a platform to be who they are, making them feel welcome. It has always been about bringing inclusiveness to those affected by epilepsy, reassuring them that they are not alone in this journey. The following story by Sheetal is a testament to our ability to offer something that people can look up to and be just who they are. While writing her experience with epilepsy, she said, "I simply poured my heart into it, and there was no stopping." We felt it. This is what we are all about: giving a platform to people to be able to do and share what their heart desires. Let’s dive into her story—it's more of a feeling—and we hope you feel the purpose and fulfillment as much as we did while reading her journey.

India Goes Purple. The color purple for epilepsy is symbolic, akin to that of the lavender flower, which in earlier days, people believed soothed those having seizures. Apparently, it does in a way. I don't know for sure. Because we are all living our lives as it is, before or after. Or are we? We'll discuss this later. I am Sheetal Bhadauriya, diagnosed in 2018, but I've had this disorder since I was born. I used to have absence seizures, in which a person blanks out for a short period and then continues with their chores as if nothing happened. I never even thought that it was a problem.

Life went well; I did well in school, then college. I got placed in a big MNC, shifted to Ahmedabad, Gujarat. The urge to do things perfectly made me divert more time towards work and less towards my diet. I skipped meals, barely slept for 5 hours. It all eventually triggered my epilepsy.

The longest and most painful seizure I had happened while my sister and I were on a video call. Thankfully, she realized something was wrong when I slammed the phone down. She immediately took action, and the next thing I knew, I was in a hospital bed with an IV.

People all over India know about this, not by the English word, as far as my knowledge goes. “Daura Padna,” “Mirgi aana” are some common Hindi terms. But the irony is, they don’t actually KNOW about the disorder. In fact, they often use the word mockingly as slang. I have seen it in movies, serials, and in everyday conversations. I believe I speak on behalf of all my warriors when I say that I feel offended. But most of the time, I don't blame them. People with epilepsy themselves don't often speak about it.

I admit that I was also clueless about the disorder at first, but with the help of my family, my doctor, and some research, I came to understand the severity of it and I still openly discuss these things. I obviously lost my job, a few motor skills, and to be honest, I had suicidal thoughts—a side effect of AEDs, also known as Anti-Epileptic Drugs.

In my case, it was Tonic-Clonic, also called Grand-Mal epilepsy, which means the person experiences a burst of electrical activity from one area of the brain that spreads to the whole brain. I had numerous seizures after that, but the frequency and the gap between the seizures were minimized. Despite my constant stubbornness to do better in life instead of just lying in bed all the time, I kept on searching for jobs. The number of rejections made me feel even worse. I also got an opportunity to work with one of the most prestigious institutes, ISRO as a GIS Analyst in Ahmedabad, and as I anticipated, I stammered a lot, forgot what I already knew, and I failed miserably. I still have anxiety/panic attacks when I talk in front of an audience (also a symptom of epilepsy).

Time passed, I got married, and things were going smoothly. In my mind, I self-declared myself as “Epilepsy-Free” and stopped the medications. After 6 months, I was back to where I started. The first thing I felt was shame and disappointment with myself that I not only put myself into this horrifying situation, but I also let down the hard work of all the family members.

Trust me, after all these years, the eye-opener was this moment. You feel invincible, but you are not too good to lose.

With this, I would like to summarize two things. First, it’s never too late to start the medications and open up with your family members or confidantes who can take care of you without judgment. If epilepsy was a person, it would be “Arjun Reddy”. It wants your constant attention, has anger-management issues, is dominating, and whatnot.

There’s only one way to keep this toxicity away: suppress it with AEDs prescribed by your doctor and not miss your dose. This is also a special thanks to my partner, who takes care of me on a daily basis, 24/7, 365 days a year.

Oh, did I say I’ll talk about two points? Yes, I forgot. (Also a symptom of epilepsy).

Signing off,
Sheetal Bhadauriya here, born on June 26th, poet, writer, audiophile, traveler, and GIS Analyst at heart. Dive into my world at 'Feral Thoughts,' where prose and poetry meet passion. I'm also behind the Feral Thoughts Foundation (an unofficial NGO), striving to ignite young minds with free, quality mental health education. Curious? Explore my latest thoughts and poems in my book, available here. Stay inspired!

Join Us at India Goes Purple

Inspired by Sheetal's story? Want to make a difference? Join us at India Goes Purple, where we aim to create a supportive community for those affected by epilepsy. Together, we can spread awareness, reduce stigma, and provide a platform for voices like Sheetal's. Join us today to learn how you can get involved and help make a difference in the lives of many. Let's embrace this journey together, in the light of understanding and support.