Deepesh Palkar, 26 from Mumbai has struggled not only with Epilepsy, but the stigma attached to it, since childhood. He shares his journey to acceptance with us.
Please tell us about your present condition. Can you describe it?
I have undergone Epilepsy surgery in April 2021 and I’m currently seizure free with no ongoing anti-seizure medications. My life and career certainly changed after the Right Anterior Temporal Lobectomy surgery for epilepsy.
What were the early symptoms? What made you go to a doctor?
The first seizure occurred around 2010 when I was around 10 years old. I suffered a seizure while playing in my building and was not aware of Epilepsy as a condition. Recurrent seizures thereafter prompted my mother to consult a doctor.
What type of seizures? What were the symptoms?
Focal absence seizures with aura in right ear. Post seizure, there was a confusion of 5-10 mins with no memory of what happened during the seizure. Sometimes I used to tell people that I'm about to have a seizure.
When were you diagnosed? What tests were done? How did the diagnosis come about?
I was diagnosed with Epilepsy after an MRI scan, because preliminary medications could not control the seizures.
What was your reaction to the diagnosis? How and when did you break it to your family?
I was a kid at the time of the diagnosis, so I didn’t understand what was epilepsy. Once I understood epilepsy, I started researching about it on the internet and understood it was a neurological disorder.
What happened next? (specialist referral, course of treatment etc.)
My family started following up regularly at KEM hospital, Parel, for treatment. The treatment started with diagnosis and timing of seizures to understand my case. I was then told to undergo some tests like MRI and EEG. Doctors then started medications and shared information for an overall understanding of my condition and about precautions to be taken.
Did you have pre-existing health conditions?
No pre existing issues apart from Epilepsy.
Is there a history of epilepsy in your family?
No.
Please describe your experience of managing the condition?
My family and I had a very difficult experience managing the seizures in the initial days as I had focal absence seizures which made it difficult for me to be outdoors alone. I would experience seizures when I was traveling, studying and playing outdoors. So, I had to restrict myself to limited outdoor activities in my childhood. There was some hesitation in my choice of career as I didn’t want any field of study that would impact my condition. So, I decided to pursue a Diploma in Electronics and Telecommunications.
Did you have to travel outside your city for medical treatment?
No, my treatment took place in my hometown.
Were there any side-effects of the medicines that you were prescribed?
Yes I had some side effects like sleepiness and extreme heat in body while I was on anti-seizure medicines.
Besides medication, what else do you do to heal and improve quality of life (diet, nutrition, exercise)?
Nutrition includes homemade food, fruits and vegetables, and I avoid processed food, a habit I still follow. My outdoor activities include simple walking, cycling with some assistance, and sports like football and cricket while keeping my friends informed about my condition. I restricted solo outdoor activities to avoid being in trouble with no help available. My parents never restricted me from playing outdoors or get involved in activities which helped me live a normal life.
You have said that you underwent a surgery? Please explain more about it.
Yes I’ve undergone surgery for Epilepsy. ECOG guided Right Anterior Temporal Lobectomy was done on 1st April 2021 and I’ve been seizure free since then. The procedure involved multiple tests like MRI, Video EEG, blood tests before finally getting into the surgery.
Did the medications not work effectively? Why was surgery suggested?
After going through the Multi Drug treatment my seizures were still not under control. Hence, I was suggested to undergo screening for Surgery. After careful considerations I’ve undergone surgery for Epilepsy. And it has been successful.
What were some of the challenges you faced and what is your advice to patients who face similar challenges?
My main challenge was to live with Epilepsy in my childhood. Fortunately, my family never made me feel that I was any different from others by not letting the stigma affect me. I often feared seizures in front of friends, thinking post seizure I would be treated differently. But luckily in my college, I had some good friends who did not let this issue come between our friendship. I could therefore enjoy my college days. But I usually avoided late night travel and solo outings. My advice to people with Epilepsy would be to accept your condition, do not let Epilepsy restrict you and live a normal life without succumbing to stigma.
Have you learnt anything in managing your condition that you wish you knew before?
I wish I could accept Epilepsy sooner and understand it’s just a neurological disorder. I have self-sabotaged myself multiple times in my teenage years, thinking I’ve no life ahead, can’t build a successful career, due to a lack of awareness and this certainly made me sad and depressed. Once I learnt to accept life with Epilepsy, it changed my perspective of life.
Are you part of any Epilepsy support group? If yes, has it been beneficial?
Random social media search connected me to Samman Association, an Epilepsy Support group in Mumbai, which has given me confidence and motivation to raise awareness about what I have faced in my life, living with Epilepsy. It encouraged me to speak about it openly and Samman has always provided me with the platform to share my lived experience in public meetings to help people understand Epilepsy.
Have you ever been involved in any form of sports? If so, has that been a problem?
No, I haven’t been involved in any major sports apart from college Football. But I quit playing outdoors after my seizures increased. Fear of injury and stigma also demotivated me and hence I gave up sports.
Is there less percentage of men getting affected by Epilepsy? Has that been a problem with your treatment?
No this hasn’t been a problem for me as I saw many men attending Epilepsy OPD in KEM Hospital and never found difficult to get treated.
Do you work now? Was finding employment a challenge? Is going through a stressful work day problematic?
I currently work as a software engineer, which has been both rewarding and challenging. There have been days when the workload and deadlines create a lot of stress, especially when balancing my health and responsibilities. However, I’ve learned to manage these pressures and continue to perform well, using coping strategies like timely breaks and support from my colleagues.
What kind of specialists do you consult and how often? (including Physio/ Occupational therapist/ Psychiatrist etc.)
I consult my neurologist at KEM every quarter to keep track of my condition and if anything needs to be changed.
What are the least understood aspects of Epilepsy?
Epilepsy is just a neurological disorder, and it can be treated and, in some cases, completely cured. It is not understood properly, specially in India. People have misgivings about Epilepsy. But actually it’s just a disorder as common as diabetes and should be treated as such.
Could you please describe an incident that led to you feeling stigmatized?
I had a seizure once while roaming at my native with some relatives. During the seizure, I also passed out urine. After gaining consciousness, I was feeling embarrassed and questioned what had happened as they didn't know of my condition.
After returning home, people kept coming to check on my health but also made my parents feel stigma by suggesting them to take me to the temple which was very weird.
Have you had to make some changes to your lifestyle because of your condition?
Not much but have tried to change my diet, like avoiding spicy, fried and processed foods to control the side effects and maintain my overall health due to Epilepsy. Also adjusting outdoor timings was a key lifestyle change. It was important to avoid exposure to intense sun which was one of my triggers for seizures.
Have you tried complementary medicine or therapies, like homeopathy or yoga?
No, I haven’t tried any other treatment mode.
Has it been difficult emotionally to cope with your condition?
Yes, in the beginning it was difficult to cope with the stigma, fear and anxiety of seizures but it eventually changed once I accepted that I had to live my life, despite challenges. I hoped one day I’d be able to live life on my own terms, which kept me fighting Epilepsy and eventually I’m happy to be living a fruitful life. The hope that one day I will be able to live life on my own terms inspired me to carry on. And I’m happy that my dream has come true.
How has your family supported you?
My family, especially my mother and sister, have been my pillars of support throughout. They have helped in all possible ways, be it for regular checkups, or motivating me to pursue education and build a professional career, taking care of me during my seizures, etc. I’m very grateful to them.
Did you see a counselor for support? Were you offered counselling by doctor?
Not a counselor as such but I was helped by doctors to manage my mental health and cope with the stigma.
What was the hardest part of the treatment? And what kept you going?
The hardest part of my treatment was getting ready for the surgery. Initially, I was scared and tried to dodge it off. But a meeting with the neurosurgery and Epilepsy team at KEM and the hope of a seizure free life helped me decide to go for it.
Is there any personal thought that you would like to share with us?
Hope is the best in coping with and overcoming Epilepsy. It is hope for control, breakthroughs, and to live a life on your own terms. That hope is worth fighting for every day.
What are you worried about for the future?
Nothing much now, but I do hope that People with Epilepsy do not have to face discrimination and stigma in society.
(As told to Moyna Sen)
