In the Face of Epilepsy: Resilience, Writing, and Beyond with Tanvi
Almost three years ago, Tanvi confronted the unexpected diagnosis of epilepsy. A night that started with routine tasks unfolded into a life-altering experience. Join us as we explore the impact of epilepsy on daily life, relationships, coping strategies, and the transformative power of books and writing through Tanvi, who is an author, blogger and avid reader.
1. Can you tell us about the time you were diagnosed with epilepsy? How did it impact you at that time?
It was almost three years ago when I experienced my first seizure. I had visited my brother’s place after a hectic day, feeling exhausted. I hastily sat down for dinner and, following the meal, I began writing a blog post for a freelancer. Neglecting rest, I immediately began typing on my laptop.
While engrossed in typing, I was also talking with my sister-in-law about my new workplace and the people there. However, that was the last memory I had, as I suddenly found myself in a hospital bed at 2:30 a.m. Confusion and restlessness overwhelmed me; surrounded by ward boys and nurses, I noticed a minor prick on my hand for saline intake. I made a phone call to the only number I knew- my brother’s. He assured me that everything was fine, and my sister-in-law would be there.
She came and I sensed fear and tears in her eyes, and that added to my fear. I felt vulnerable, realizing that instead of being a support, I had become the cause of her stress.
The next morning, I awoke with a heavy headache and went to freshen up. During my morning routine, I noticed vomit in my hair. The full gravity of the situation unfolded, and I began to piece together what had happened.
Accepting the reality of living with restrictions and precautions, contrary to my nature of living freely, was hard to digest. However, I refused to believe it was the end. With faith in medical advancements, I committed to undergoing proper treatment and overcoming whatever challenges I might face.
After consulting a neurologist, things seemed fine until scan reports and blood tests revealed neurocysticercosis. Prescribed a three-year medical course, I was advised to stay home for regular testing of side effects. The doctor cautioned against riding or driving, emphasizing that exhaustion could be fatal.
“From an active beast, I became a vulnerable being.”
This phase left me shattered yet awakened. I realized the importance of pursuing my dreams, considering every night might be the last. Despite working tirelessly day and night, I managed to steal time on weekends to complete my debut book, published in September 2021. Setting a goal to publish a book annually, I’ve now fulfilled that promise with three books in the market, all while juggling my job!
2. How has epilepsy influenced your daily routine? Are there any coping strategies you use?
Medication had its toll on my mental health, leading to moments of absent-mindedness and forgetfulness. Although others assured me it was a common experience, I chose not to dwell on it. I refrained from discussing my illness extensively and distanced myself from social interactions.
Frequent feelings of nausea and headaches compelled me to adopt a cautious approach, even resting on the same date each month to avoid potential seizures. The fear of impending episodes led me to restrict myself unnecessarily. Initially, frequent visits to the doctor were needed for medication adjustments. Later, I switched to working from home to improve my mental and physical health, given the limitations imposed by the condition.
With time, books became my best friends. From writing to reading, I did it all. I spent more time planning my next book or reading books for motivation.
“Because I cannot live a life of sympathy and obligations, so I had to overcome it.”
3. In terms of relationships and social interactions, how have you found support from friends, family, and the community? Any incidents you’d like to share with us?
The support from my family has been immense, helping me overcome the fear associated with seizures. During my first seizure, the emergency doctor at the hospital wrongly attributed it to alcohol consumption. When my papa came to know about that, he was furious.
In another incident, people at my workplace made fun of me saying it was a tapeworm-induced infection. All of this added to my depression.
“I did not want to let others know how weak I felt at that moment.”
Because of these incidents I withdrew and did not feel like discussing my illness with anyone. I tried to forget about it and just follow the doctor’s advice. While the fear persisted, I haven’t experienced another seizure by the grace of God. My hope is for future medical visits to bring positive news, allowing me to move forward without the looming threat of seizures interrupting my life.
4. What has your experience been like when it comes to epilepsy awareness amongst others? What changes do you like to see in the way the world perceives it?
My journey with epilepsy has revealed that people often believe hearsay without conducting proper research. For instance, if they hear that tapeworm is one of the reasons, they will stop eating vegetables that might have it. A deeper understanding is required, acknowledging that epilepsy can be caused by various factors, including hereditary predisposition.
Calling for a change in perception, it’s crucial to encourage learning about epilepsy, as it can affect anyone at any stage of life.
Awareness should extend to workplaces, with emergency tools for people with epilepsy, similar to those for disabled people. Understanding that epilepsy does not discriminate by age, educating children from a young age about the condition is crucial.
“I am no expert on the subject, only a victim of it. The rest I leave to you to educate yourself about it.”
5. People often find strength and inspiration in various sources. How has your journey with books, reading, and Bookstagram helped? Any particular anecdote you’d like to share?
After my epilepsy diagnosis, I felt shattered and constantly battled fear. Choosing sleep as an escape was not a sustainable solution, given my aspirations. Raised in a middle-class family, I was driven by ambitious dreams. Recognizing the uncertainty of life after that fateful night, I channeled my energy into writing my debut book, “Surrounding Thoughts: An Anthology of 50 Poems.” However, this was just the beginning.
“Reading keeps me sane and writing uplifts my mood.”
This initial book fueled an addiction to writing, inspiring me to commit to launching a book every year. Three books in three years have since materialized, marking a continuous tradition. Engaging with the reading and writing community, overcoming my initial fear, has led to new connections and experiences. The journey, post-incident, has seen me grow in various aspects, including writing books, reviewing, blogging, and podcasting.
6. A message you have for the world this Epilepsy Awareness Month (November)
Learn, research, and refrain from judgment. Epilepsy is akin to any other ailment and should not dictate a person’s life. If motivation isn’t your forte, at least stay away from demotivating.
From my journey, I’ve realized that seeking sympathy can have detrimental effects on mental and physical health.
“You may be different, but you are not incompetent.”
As we conclude this conversation with Tanvi, another page in our dialogue for Epilepsy Awareness Month, we are reminded that strength is often found in the most unexpected places. Her journey with epilepsy has not hindered the pursuit of her dreams. From facing the vulnerability of diagnosis to emerging as an author with three published books, Tanvi exemplifies resilience.
In the spirit of awareness, let us carry forward the message to learn, research, and withhold judgment and let empathy guide our understanding so we can create a world where everyone is seen beyond their condition, where differences are acknowledged, and strength is celebrated.
You can follow Tanvi’s bookstagram journey here.
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