The Resiliency of my Brain
It’s been 9 years since I have been seizure free, but I never had the courage to share with the world until I learned how resilient is my brain. In traditional cultures, having a disability is like a scar and people would still continue discriminate you even if you do not have that disability. Unlike western countries, I was raised in India1 and got brain damage when I was 7 months. My condition was misdiagnosed for about 13 years, and within those years I also overcame partial paralysis2, and coma.
I spent the majority of my childhood behind closed doors as people did not knew to take care of my seizures. 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 a brain surgery and have been seizure free without any medication since then. Everything changed except the fact several people I grew up around continued to perceive me negatively. I wanted to give a different direction to my life, and after my treatment I moved to United States to pursue my bachelor’s degree in psychology. 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. Epilepsy doesn't affect my life at all today. But, it does every time I go back home due to the strict laws and misunderstandings about it. Over the years my silence regarding my epilepsy gave rise to a fear and anxiety 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 so in order to reduce that I decided to take every opportunity I could to help people with disability. For example, every summer I would work as a camp counsellor and provide support to people with disability.
After gaining 5 years of experience in clinical and mental health settings, I decided to move to London3. The first few months living in London was not easy for me because the culture, and the way London looks reminds me a lot about my upbringing in Mumbai4, India. I started looking up on internet on how to get over this and eventually ended up on the Epilepsy Sparks website5. I messaged Torie Robinson6 on LinkedIn7. And, trust me after meeting her it was the first time I had a positive experience of sharing my story. Afterwards I decided to take some time and share my experience with others. As part of this process I went back to look at my medical reports and frustratingly found that several statements contradicted one another. Thankfully, as a mental health professional and an aspiring neuropsychologist8 I was able to navigate the process of clarifying information much more easily than many. Moreover, I was fascinated to learn that I had undergone an amygdalohippocampectomy9, which is a type of brain surgery where part of your cerebrum10 and medial temporal lobe11 are excised. I also learned that I’d had three types of seizures including focal and generalised tonic-clonic12. And, I learned all this information after being seizure free for 9 years.
I found it to be very common for patients and their families in India to never be provided with complete information by their medical team. I am very lucky to have overcome epilepsy, but I still battle for those who live with the condition. Again, despite not having epilepsy anymore I still 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 to support people with epilepsy. In the past, I was involved with the Epilepsy Foundation13 in the United States. Currently, I am an ambassador for Epilepsy Society14, and support organisations like Epilepsy Action15, and Epilepsy Positivity16 in England. I am also writing a book called ‘Rediscovering My Epilepsy’. My book will take you through my epilepsy journey and it’s comorbidities17 from both a professional and a survivors’ lens. My negative experiences of being raised with a disability in a traditional society have enabled me to become a change-maker and inspire others to eliminate stigma.
Ankita Guchait, QMHP (US), MBPsS (UK)
Aspiring Clinical Neuropsychologist
E: ankitaguchait@gmail.com | L: linkedin.com/in/ankitaguchait | W: ankitaguchait.wixsite.com/ankitaguchait
