During School, College, Job and many times in my life- I have been asked, "Ohh what did you say, You are Epileptic, I am so sorry to hear that, but I don't know what it means." This blog is an attempt to answer that query from the perspective of someone who lives with it. The motivation is to help bring awareness about this disease that affects around 65 million people worldwide including me. But sadly is not TALKED about :( .
I had my first seizure, when I was just 3 months old. The only symptom - I didn't Blink for a full two minutes. My mother noticed that something was amiss. She rushed to a neighbour's place wondering what had happend to me. However, by the time she took me in her arms, and reached their place in a panic mode, I had recovered. Thus, the very first episode was ultimately dismissed lightly. But, then the seizures became very frequent; sometimes occuring twice a day. My parents were scared, they feared whether I would be able to survive and thrive in this world. They did all that a parent could do - studied about the disease, joined clubs and forums, discussed with relatives and well wishers and reached out to all doctors they could contact. They also tried various alternative treatments- homeopathy, ayurveda, home remedies even took me to an ashram in Rishikesh. I was being fed all kinds of medicines, home remedies, parents took a variety of opinions- from mystics, to doctors and relatives. But it took some time and 20+ such seizures, before I was properly diagnosed with Epilepsy. Yet, even after the diagnosis, CT Scans and MRI's and various medicine prescriptions Nothing Worked.
My mom started keeping a record of all the symptoms, date and times of all the seizures. Most of them were febrile in nature, that implies that they were preceded by fever. Needless to say, my parents would freak out every time I caught cold or fever. Food items, kids of my age enjoyed- Icrecreams, soft drinks, junk food were BANNED. Overtime, different doctors experimented a variety of medicines with me, until Dr. PK Sethi prescribed frizium which was a new entrant in the market at that time, and isnt usually recommended to be given regularly. However, Frizium worked like magic, the frequency and intensity of seizures started reducing. Later on, with the advancement in science and medications, I switched to DIVAA-OD(slow release variant of valporate), this too worked well for me, though it is recommended to get blood tests done, after making the switch. Under Dr. Rajnish Kumar, I have quite recently switched to Levipil(Levetiracetam) as valporates are known to cause some side effects. (DISCLAIMER: Do not switch medications, without consulting a neurologist, also do keep in mind that there are overlap periods during the transition )
Living the NORMAL+ life:
All this while because of the strong support system I had because of my parents and family, I was able to lead a normal life (as normal as it could get). I was able to excel both academically and in my co-curriculars because of the strong encouragement of my near and dear ones. Yet, the journey wasn't easy, and trust me epilepsy teaches you empathy and that everyone has their own demons to fight. After following with the routine and braving the storm, I now live a normal life. I enjoy taking all the rides in Adventure park, tried my hand at swimming, I am now even learning to Drive. I lived a corporate life, staying in Bangalore alone, away from my parents for the first time in life. I now look forward to carrying forward my research and helping others brave the storms in their life. If I could face it, you can too! Do let me know if I could be of any assitance to you :)
5 Ways epilepsy is life changing:
1. Your parents worry a lot : The first thing first! Your parents are bound to worry! Miss a call at 2 AM and they are likely to loose their sleep. Keep them updated about your whereabouts. Share your parents phone numbers with your peers and friends! They are bound to get a lot of calls (Trust me, I have seen this happening)
2. Some food items and activities might become rare : I had to take permissions before having an icecream! Fret not, you will always find alternatives. Once you are stable for a long duration, with the permission of your doctor you can even Swim and Drive ! Yayayaya !
3. Changes in Sleep Cycles : Epileptic medications are bound to alter your sleep cycles. You might want to sleep a whie longer than everyone around. This is quite normal!
4. You will start respecting time : As a result of longer sleep cycles and less time at hand, you will tend to become more time efficient, and also a bit more motivated.
5. You learn the difference between sympathy and empathy : You recognize the fact that each individual has their own demons to fight! Empathy comes like second nature to you :)
Fighting epilepsy is tough, here is what helped me along the way.
5 things to remember:
1. Routine is Important : Take your medications on time. Time your body clock, manage and time your food and sleep well.
2. Do not be afraid, break the taboo : Keep everyone well informed about your health condition. They should be aware of how they can support you during and after a seizure.
3. Have some faith : Never loose faith, trust that with time and a bit of patience everything would get better. Also have faith on your doctor.
4. Yoga and breathing helps : Focus on your health, try some yoga and practice pranayams, this really helped me. If yoga is not your cup of tea, join an indian classical dance class- they have the same therapeutic effects :) (Watch my Dance Guru Smt Kanaka Sudhakar, talk about these in detail, here :) )
5. Focus on developing a strong support system : Join communities, dance, find a hobby, read books and meditate(Alone it is tough, I recently joined this great community (In an attempt to better my sleep cycles and getting up early) here )to aid your healing process.
Know an Epilepsy Fighter? Want to help and support them? Join in here :)
I have always felt the need to start a community for people facing epilepsy especially the caregivers since they need some mental and emotional strength to brave the storm. I have just started an initiative in this direction. Help spread positivity and awareness :)
Be a Whistleblower! Help us break the taboo
Finding the fun Factor everywhere :)
1. International Epilepsy Day : This falls on 2nd Monday of February. This year it would be on 8th of Feb :) You could be a part of the global awareness for epilepsy by recording your steps and helping them complete their taget of 50MIllionSteps, use the #50MillionSteps to enter the event. I heard their are prizes too !
2. Go_purple : There is another such event known as the Purple day that comes on 26th of March every year. Lavender or Purple is the color for epilepsy awareness ( Like a Red ribbon signifies AIDS awareness). Go purple to spread awareness :)
3. We have an entire month, to bring that change : November is also known as the month for epilepsy awareness.
4. Famous personalities, Inspiring stories : A lot of role models, celebrities and even scientist have been through the same storm and led extraordinary lives. I make it a point to read about their lives, but i am yet to find an indian role model (Found one and what an Inspiration he is :) .. Stay tuned for the next post) , if you can guess this one.. do let me know.