It’s been 9 years since I have been seizure free, but it’s now that I’ve learnt how resilient my brain is that I have the courage to share my epilepsy story with the world. In many traditional cultures, having a disability is like an ugly scar and many people still continue discriminate against you even if you no longer have a disability. Unlike in western countries, I was raised in India and as the result of brain damage as a 7month-old baby; developed epilepsy. My epilepsy was misdiagnosed for about 13 years, and over those years I also overcame partial paralysis, and coma.
The majority of my childhood was spent behind closed doors as people did not know to react when I had a seizure. At school people would say that it was a magic spell or would encourage me to commit suicide.
At the age of 15, I underwent brain surgery and have now been seizure free without any medication since then! Everything in my life changed after my surgery - apart from the fact that several people I grew up around continued to perceive me negatively.
I wanted to give a different direction to my life, and I moved to the United States to pursue my Bachelor’s Degree in Psychology after I finished my epilepsy treatments. I left India with a hope to learn how to eliminate stigma and find a place in this world where you can freely talk about your disability.
Seizures or drugs don’t affect my life at all today (although the scars from the past still remain). Due to the strict laws and misunderstandings about epilepsy in India, every time I go back; I feel again like an outcast. Over the years the silence regarding epilepsy gave rise to a fear and anxiety within me to the point that when I moved overseas, meeting people from my own race made me very anxious.
The negative experiences that I got from living in a traditional culture kept me in a lot of guilt and in order to reduce that I took every opportunity to help people with disability. For example, every summer I would work as camp counsellor and provide support to people with disability. After gaining 5 years of experience in clinical and mental health setting, I decided to move to London. The first few months living in London were not easy for me because of the culture, and the way London looks reminds me a lot about my upbringing in Mumbai, India.
I started looking up on internet on how to get over this and eventually ended up on Epilepsy Sparks2 website. I messaged Torie Robinson3 on LinkedIn. And, trust me: meeting and talking to her it was my first positive experience of sharing my story. I decided to take some time and share my experience with others. During that process, when I went back to my medical reports (which contained many contradictions), I got frustrated. Thankfully, as a mental health professional and an aspiring neuropsychologist I was able to navigate the process easily. Moreover, I was fascinated to learn that I had underwent amygdalohippocampectomy4, which is a type of surgery where part of your cerebrum5 and medial temporal lobe6 is excised. I also learned that I had three kinds of seizures including focal7 and tonic-clonic8 seizures. And, I only learnt all this information after being seizure free for 9 years. It is very common in India for patients and/or their family’s to never be provided with complete medical information by the medical team. I am very lucky to overcome epilepsy, but I still battle for those who live with the condition. Again, despite not having epilepsy anymore I come across stigma in India in some way or another.
Today as a mental health professional, I move across countries and work with the regional epilepsy organisations and support people with epilepsy. In the past, I was involved with the Epilepsy Foundation9 in the United States. Currently, I am an ambassador for Epilepsy Society10, and support organisations like Epilepsy Action11, and Epilepsy Positivity12 in England. I am also writing a book called ‘Rediscovering My Epilepsy’ and, this book I will take you through my journey of epilepsy and its comorbidities from both the lens of professional and a survivor. My negative experiences of being raised with a disability in a traditional society enabled me to become a change maker and inspire others to eliminate stigma.
Writer, Researcher, Psychologist in Progress
1. Anky Guchait: https://www.linkedin.com/in/ankitaguchait/
2. Torie Robinson, LinkedIn: https://www.linkedin.com/in/torierobinson/
4. Mayfield Clinic: https://mayfieldclinic.com/pe-anatbrain.htm
5. Wikipedia: https://en.m.wikipedia.org/wiki/Temporal_lobe
6. Epilepsy Action – focal seizures: https://www.epilepsy.org.uk/info/seizures/focal-seizures
7. Epilepsy Action – tonic-clonic: https://www.epilepsy.org.uk/info/seizures/tonic-clonic
8. Epilepsy Foundation: https://www.epilepsy.com/
9. Epilepsy Society: https://www.epilepsysociety.org.uk
10. Epilepsy Action: https://www.epilepsy.org.uk/
11. Epilepsy Positivity: https://www.epilepsypositivity.co.uk/