Breaking barriers: Battling Epilepsy
–Siddhi Kadam
Henry Ford termed it right- ‘When everything seems to be against you, remember that an airplane takes off against the wind, not with it.’ And this has been my motivation throughout the span of 26 years as I’ve battled through Epilepsy- A severe brain condition that causes recurring seizures. A seizure is a burst of uncontrolled electrical activity between brain cells (neurons) that causes temporary abnormalities in muscle tone or movements (stiffness, twitching or limpness), behaviors, sensations or states of awareness.
Epilepsy is predominantly defined by ‘auras’ that is an unusual sensation marking the beginning of a seizure. Right from the age of 1, auras were persistent, thrice monthly; and it took 20 years for the diagnosis of my epilepsy. Battling through seizures throughout my childhood was a daunting task considering how frequent they were. But as they say, there is light beyond the darkness, and my epilepsy got diagnosed in the year 2015. Anti-epileptic drugs did control the seizures but they could not prove to be a permanent cure. The drugs brought with it obesity, anxiety, disturbed sleep cycle and tiredness to name a few along with the reduced seizures that prevailed. It was mentally draining for me as well as for my single mother but we stood like a rock behind each other throughout. Painting, illustrating, journaling and yoga have been my go-to therapy.
8 years of having medication of about 1200 mg of anti-epileptic drugs per day was a preventive measure, until 2023 when I was advised to undergo brain surgery by my neurologist. According to the latest statistics, only 1% of epileptic patients are advised surgery since it counts amongst the most complicated surgeries in the world of medicine. The positive aspect of brain surgery meant reduced seizures, improvement in day to day lifestyle but it also brought with it 30% chances of coma, paralysis, stroke and blood clots. Life is all about risks and I took the road not taken because I’ve always believed ‘when life is life-ing, God is God-ing and one’s got to trust his plan’. 29th June 2023 was when I embraced rebirth with open arms.
The path to recovery was tough, I had to learn to walk and eat as a new born child. But I had complete trust in the magic of new beginnings. With the help of my pillar of strength- my Maa and the almighty’s blessings, I recovered, completed my Double Masters (M.Tech and Post Grad in Business Analytics) and bagged a job at Reliance Jio, 5 months after my surgery. Today I am an active part of India’s leading epilepsy association- Samman, that is dedicated to empowering people with epilepsy. And we at Samman hold rural medical camps for epilepsy awareness and medicine distribution, and raise awareness about the stigmas related to epilepsy. Jan ’24 also had me participating in the Tata Mumbai Marathon 2024 under the 6 km Dream Run where I could raise 50,000 as charity and I am about to participate in my next charity run.
Your life is in your own hands, we only need that one chance to break free of our cocoon and give ourselves the freedom to fly. God indeed made everyone’s brains beautiful and equally colorful only for us to paint the canvas of our lives. I remember my neurosurgeon saying this 2 months post my surgery, ‘Girl, you are a warrior, you carry your scar as your pride. In my entire medical practice of 30 years, you were the only one to have a brain surgery and go home after the 5th day of your surgery. You are a true story of a phoenix rising from the ashes!’
