At 26, I'm a coder and professional managing multiple projects during the day. Beyond work, my life is a medley of passions—running, meeting new people, exploring new cultures through travel, immersing myself in music, and indulging in the world of literature. But my journey to this point has been shaped by an unexpected companion—epilepsy.
My encounter with epilepsy started at a tender age due to surgery for a brain tumour and subsequent complications. Because of that, my childhood wasn't typical; it was intertwined with frequent hospital visits and the necessity of constant vigilance to prevent physical injuries.
My parents are the unwavering pillars of my life - tirelessly working to secure me and my brother’s future. They navigated the challenging waters of raising a child with epilepsy with grace. Despite the stigma surrounding the condition, they never let it define or limit me.
In India, epilepsy has often been connected to cultural superstitions and misunderstandings which link it to divine punishment and evil spirits. This leads to discrimination and social isolation. My urban situation ensured that social isolation was never a problem, but there were whispers and sympathy that made me feel helpless.
My parents helped me take this and turn it around. They taught me to openly share my story in a positive tone which encouraged others to engage with me from a place of genuine interest and not sympathy. They also ensured that in my educational institutions, I was not treated differently compared to other kids. They talked about my condition to every teacher who taught me (till I was capable of having these conversations myself) in an educative and informative tone.
Despite never having a seizure in school, they never stopped this conversation because the goal was not precaution but awareness.
When I had a seizure 3 days before my 10th-grade examinations, my parents offered help by asking me if I wanted to apply for extra time or a writer. Fast forward to my 12th-grade examinations, as anxiety crept in, I found myself asking them if I could use my epilepsy as a reason for extra time. Uncertain whether this was even a feasible option for a person with epilepsy (PWE), we navigated the situation together.
In both instances, we engaged in honest discussions, aiming to discern whether my concerns were grounded in genuine need or if panic was driving us to use my epilepsy as an excuse. Ultimately, our collective conclusion was clear: we sought to avoid using my condition as a pretext, recognizing the importance of facing challenges head-on.
For my parents, epilepsy was like any other aspect of life—a part of me, not something to be concealed or ashamed of. Their attitude ensured that for me, epilepsy was normalized— and that became an integral part of who I am.
Reflecting on my upbringing, I can only imagine the daunting challenges they faced—balancing the demands of earning a livelihood while simultaneously providing dedicated care for me. Despite the complexities and hardships they encountered, they never allowed epilepsy to cast a shadow over my life.
Openness became our shield against misconceptions. Whether calling out for medicine during childhood games or openly discussing my condition in front of others, my family ensured that epilepsy wasn't a whispered secret but an accepted part of our lives.
This candid approach encouraged me to have honest conversations as well. As I stepped into adulthood, facing potential triggers like alcohol, discussions with my parents helped me navigate choices responsibly. Their unwavering support taught me to respect my body’s signals, understand limits, and manage triggers effectively.
My neurologist, Dr. Amit Shah, played a pivotal role. His guidance and shared experiences steered me towards acceptance and hope. He was committed to helping me live a fulfilling life celebrating every mental and physical achievement with me. When I was preparing for my first half marathon, I think in some sense, he was more excited than me.
However, Dr. Shah also always prioritized safety. At 18, when I was finally of legal driving age, but not seizure-free, I asked him if I could drive. He denied it and when he saw I was dejected, he said, “Divij, I am far older than you and I still don't drive. I have a driver and that's what your aspiration should be.” It may sound cliche, capitalistic, or even classist to some people, but there, at that moment, was a ray of hope that I held on to. Hope for a normal regular life.
Medication adjustments have brought side effects like weight fluctuation, drowsiness, and more. Yet, managing epilepsy isn’t merely about medication—it's about holistic self-care encompassing sleep, nutrition, physical activity, and seeking professional support when necessary.
Understanding triggers and adjusting to changing seizure patterns mark my ongoing battle. Despite having epilepsy forever, I still have not been able to figure out my exact triggers. As I grew up, my frequency and type of seizures changed too. I have had a seizure while sitting in a restaurant and not doing anything and on the flip side, I have been seizure-free after a concert with strobe lights, loud music, and alcohol.
One way to identify triggers is to maintain a seizure diary, where you record in detail the 24 hours before and after a seizure as well as the seizure in as much detail as you can since this will help in recognizing the pattern. Every person with a seizure will have different triggers.
In my case, I have realized, moderation is the key. Going to drink in a night? Don’t cross the threshold and sleep well the night before. Not able to exercise regularly? Be extra careful about your diet. As long as I don’t introduce multiple triggers, such as lack of sleep, stress, alcohol, inadequate diet, lack of physical activity, and overstimulation by light and sound, at once, life remains relatively seizure-free.
There is a time in everyone's life when you move away from home and for a person with epilepsy it's scary for both you and the caregiver since seizures don't send a warning, but that is where precaution and communication come in.
I have not only lived away from my caregivers for 2 years but also regularly solo traveled. We had a conversation with my neurologist and got his approval (at this point, it feels like the 4 of us are a single unit that focuses on the best quality of life for me and has a conversation within itself before any major decision).
A few things I tend to follow are: having my emergency information on me at all times and keeping the people around me informed about my condition along with telling them the basic dos and don'ts. I always stock up on my medications for a couple of months as medicines may not be easily available in every place I travel to. I still maintain regular 6-month follow-ups with him while consulting a general practitioner in the city I am in.
However, living independently has been not only possible but also extremely fulfilling. My support system consisting of my family, friends, and trusted healthcare provider has ensured that despite the journey's hardships, I now celebrate being one year seizure-free.
Epilepsy is a part of me—a thread intricately woven into the fabric of my life's tapestry. And I strive to share my story not as a tale of adversity, but as a testament to resilience, acceptance, and the power of unwavering familial support.
Advocacy is my mission—as I aim to create a platform to shatter taboos surrounding epilepsy. Being vocal about my experiences on social media like Instagram (@therealdivij) has sparked conversations and addressed misconceptions. Through sharing these experiences, I aim to dispel the myths surrounding epilepsy, fostering a world where individuals living with this condition can thrive without fear or judgment.
Edited by Christianez Ratna Kiruba.
Image by Janvi Bokoliya.
