When New Delhi-based Vinay Jani, now a bicyclist and ultramarathoner, was diagnosed with epilepsy in 2005, he was twenty-one years old.
Epilepsy is one of the world’s most common neurological disorders, affecting over 65 million people worldwide. More than 15 million, approximately 1% of the Indian population, are estimated to be in India alone.
Despite such a high prevalence, awareness concerning epilepsy in India is appallingly low. This lack of awareness perpetuates the already existing stigma around epilepsy, with sufferers facing discrimination and harassment in education, employment, and marriage prospects. They are treated with fear and antipathy, sometimes even called mad. Thus, the lack of knowledge makes epilepsy a social problem, not just a medical one.
In this exclusive interview, Vinay talks to us about the challenges he faces, how he started long-distance running and randonneuring (endurance or long-distance cycling in specified time), as well as common myths, beliefs, and facts about epilepsy.
IC: You were diagnosed with epilepsy at the age of 21 in 2005. What was it like, and how did you cope with the initial setbacks?
VJ: When epilepsy struck my path just a few months after I started my business, it completely changed my life. My family became overprotective of me because I was not aware of how to manage seizures; nobody among my relatives had this neurological condition.
A free bird like me was put inside a cage for my own protection, and I began to overthink it all through the day. Lots of opinions were taken regarding the course of treatment, and this made my family and me more and more confused.
Initially, I started with homeopathy and later with Ayurvedic medicines. In December 2008, my focal seizures (complex, partial) graded up to a generalized seizure, and I was hospitalized where a neurologist advised, and I quote, “I’m prescribing you medicine dosage that is not as per your body weight; it is up to you whether you want to lose weight or you want to increase the dosage of your medication.”
I chose the first option and began my journey to lose the 40 kilograms that I had gained from July 2005 to December 2008.
IC: Tell us how you managed to push the envelope, and start long-distance running and randonneuring.
VJ: In December 2008, I started exercising at the gym. In September 2015, I met an indoor cycling trainer, Mr. Gautam Verma. As I was regular in his indoor classes, he asked me to join him for an outdoor cycling ride on Sundays. I shared that outdoor cycling would be risky for a person with epilepsy, but he assured me that he would ride along with me.
The initial rides were 30 kilometers. After my continuous participation in his outdoor rides, he pushed me to do longer rides with other riders in the main group. Most of those riders did a format of brevet (long-distance cycling within prescribed time limits in designated but unmarked routes), which starts from 200 kilometers onwards.
I began trying every day to expand my own limits. I did my first brevet of 200 kilometers with the group in May 2016. I also started doing long-distance running in September 2019 and signed up for a half marathon scheduled for October 2019. Since I had been pursuing endurance sports for a while, it supported me well for the run, but a marathon needed proper training.
IC: What are some of the events you have completed so far?
VJ: My Super Randonneur title was a big event for me, where I did formats of 200 kilometers, 300 kilometers, 400 kilometers, and 600 kilometers; every ride was a learning event.
My ultra-cycling event of 1,000 kilometers in September 2018, from Surat to Abu Road and back, was a great learning lesson. Paris-Brest-Paris in 2019 was left unfinished, but it taught me how to learn from failures. Airtel Delhi half marathon in October 2019, and New Delhi Marathon in 2020 followed. My recent ultra-cycling event of 1,000 kilometers, from Gurugram to Atari, and back to Kundli, was done in partnership with Ekatwam, an NGO for persons with epilepsy, in order to spread awareness about this neurological disorder.
IC: Tell our readers more about epilepsy—the myths, common beliefs, and facts that people may not be aware of.
VJ: Epilepsy is the second most common neurological disorder, affecting 60-70 million people across the world, with nearly 15 million of them in India alone. It is treatable, and in 70% of the cases, the seizures can be controlled with a combination of medicines. In some cases, surgery may be needed.
The most common myth is that a person with epilepsy is possessed by spirits, and hence needs to be treated by a tantric. That is not true and a neurologist should be consulted for the same. Additionally, thinking that making the epilepsy patient smell a shoe during a seizure will help him get better is also not true.
Another myth is that medicines need to be taken only until seizures stop; the entire course must be taken, and the medication stopped only when the neurologist advises.
Another common superstition is that if a girl has epilepsy, she can pass it on to her children, or that she cannot have children at all. The fact is that any woman with epilepsy can have seizure-free children, provided medicines are tailored well during pregnancy.
IC: What efforts do you feel should be made to increase awareness and reduce the stigma around epilepsy?
VJ: Like the AIDS and Pulse Polio campaigns, there needs to be a “National Epilepsy Control Program” to spread awareness about this disorder at a national level. Medicines for epilepsy are on the essential drug list and must be made available in the hinterlands too. Also, a lack of knowledge about the disorder is the reason for the stigma attached to it. Hence, awareness will not only help reduce the stigma associated with epilepsy, but will encourage people with the disease to seek appropriate treatment and lead normal lives.
IC: What are your future plans? Upcoming marathons and other initiatives?
VJ: One must live in the present and always make goals for the future. I’m looking forward to participating again in the Paris-Brest-Paris scheduled for August 2023 and spreading awareness about epilepsy through my participation. Subsequently, I will start training for triathlons as I believe one should always keep exploring.
I keep writing about epilepsy on my social media handles and participate wherever required. Recently, I have raised 15 million steps for the Indian Epilepsy Association—Mumbai Chapter during the “50 million Steps Campaign” of the International Bureau for Epilepsy.
IC: What is your message to people like yourself who are suffering from disabilities across the world?
VJ: My message to other people with epilepsy would be to seek treatment, acquire a skill set to lead an independent life, dispel myths and superstitions by spreading awareness, and inspire others to do the same. My motto in life is: There are NO LIMITS to what a person with epilepsy can achieve.
Neha Kirpal is a freelance writer based in Delhi. She is the author of Wanderlust for the Soul, an e-book collection of short stories based on travel in different parts of the world.