Preeti Singh, 49 from Chandigarh is a successful author whose latest book ‘Of Epilepsy Butterflies’ is hitting the right notes. She herself has been living with epilepsy since the young age of two, and here she talks about how life has taught her to live with the condition through ups and downs and how society turns its face away from people with epilepsy.
When were you diagnosed? Can you tell us about the early symptoms?
When I was being delivered as a baby, I was apparently dropped by the nurse and got a head injury which resulted in my first seizure 2 years later. I was bathing in the tub with my sister and I turned blue, developed high fever and fainted I guess. Rapid test results and investigations helped the neurologist conclude that I had epilepsy at the tender age of two.
Is there any history of epilepsy in your family? How did your parents prepare you to handle the challenges of such a difficult condition from the early years?
No…there is no family history of epilepsy in our family. In fact, epilepsy is rarely hereditary. My parents and elder sister were very healthy, touch wood and must have been very shocked to know about my condition but they never ever let me feel it. I was loved, pampered, accepted and over protected like any other toddler. Yes, since childhood, I was taught to take my medications as part of my daily ritual, as missing a single dose could definitely invite a seizure. My parents would be on constant alert about my health, as I would often be careless, being a child, but they never made me feel any different.
What is your present condition?
I had my last seizure in February 2021 ! Other than that, I am absolutely active and handling home & hearth with complete alertness by God’s grace.
Please describe your experience of managing epilepsy?
Epilepsy cannot be cured but one can control it by managing it well. You need to know your triggers well and be sure not to miss your medications ever! So, I make sure through reminders that I never miss my medications. I try not to wake up my triggers which can cause seizures and try my best to remain emotionally sound.
Are there any side-effects of the medicines?
Yes. AED ( anti epileptic drugs ) have plenty of side effects but they are varied, depending upon the medications you are taking. For example the ones I take make me very drowsy, sluggish and make my brain foggy, leading to memory loss. Another side effect of the medication I am taking is putting on weight so I have to watch what I eat ! We also suffer from swollen gums and bad breath as one of the side effects. The list is endless as the medicines vary but in the end we epilepsy warriors are fighters and we do not want anyone’s pity, just everyone’s acceptance and love.
Read More: Experiences of Persons With Epilepsy
What were some of the challenges you faced and what is your advice to patients who face similar challenges?
One of the biggest challenges I have faced is acceptance by society. In my experience, we, PWE (people with epilepsy) are rejected, abandoned and sometimes treated as untouchables! Epilepsy is still considered a big taboo in our society and not talked about. I wish and would strongly advise parents to encourage their children with epilepsy to live a complete life, just like my parents did. We didn’t ask for such a life…it was given to us by God. It is not our fault, so why punish us for it. We want to be accepted, loved and cared for. We want to be given jobs, married easily and not looked down upon. Epilepsy should be openly talked about like cancer, diabetes or any other ailment without any hesitation. It is just any other brain disorder..not a stigma.
Have you learnt anything about epilepsy that you wish you knew before?
Yes, I myself was unaware of so many things about epilepsy till I began writing my book ‘Of Epilepsy Butterflies’ and realized about terms like SUDEP ( Sudden Unexpected Death In Epilepsy ) in which death can occur during sleep if you miss your medications. I had realized then, so many times, I had missed my medicines and taken my condition lightly, and I could have died in sleep due to choking, but have survived somehow! That’s when it dawned on me, it was time to educate others too, more and more about this lesser knows disorder, especially in India, where the stigma is so deep.
What kinds of doctors specialize in epilepsy and how often does one need to consult them?
Once a neurologist will diagnose your epilepsy disorder, you will be prescribed a pattern of medications depending upon your condition. Each patient, each condition, each seizure is different, so one cannot generalize. Each time you have a seizure, your neurologist, will reset your medication after maybe conducting an EEG test on you.
Have you had to make some changes over the years to your lifestyle because of your condition?
Every case of epilepsy is different. Epilepsy can happen to anyone, at any age, at anytime. I developed epilepsy when I was 2 years old but many have developed it when they were 22 or 42 or even at 72 ! Just at any age ! Yes, epilepsy changes your life completely, just like any other disease and you have to make lifestyle changes. Over the years, I have become very slow in doing basic household chores, taking a shower or even simple things like checking my mail. It takes me 2 years to write a book because my hands do shake when I type even on mobile or the laptop. I could no longer sustain a full time job, so I work from home and pick up projects when it suits me because adequate sleep is required due to the heavy dosage of medications. But when you accept you have a problem, you smile and carry on and life is peaceful. Acceptance is the key.
Have you tried complementary therapy like yoga or alternative medicine?
Alternative medicine doesn’t work in everyone’s case and it didn’t work in mine too. All through my childhood, my parents tried everything possible other than allopathic medicines, as it would make so sleepy in school and it resulted me being a below average student, but all kind of therapies failed. My seizures could only be controlled by allopathic medicines which became my ultimate armor, which missed once, would cause a seizure and the treatment would be back to square one. Yes, occasionally I do practice yoga, but just to lose weight, which never really happens, lol.
Has it been difficult emotionally to cope with your condition?
Definitely, yes, sometimes. I am human, after all. When I see everyone all around me, able, active and alert enough to do so much, often I do go into a self pity mode. It happens. There are frozen staring spells called ‘absence seizures’ I have multiple times in a day.Often during an important conversation I am lost for a few seconds and then I come back! At such times, I do feel lost how to cope up with life and handling things alone! But it’s not in my control and I have left myself in God’s hands. I believe He has manufactured me like this…so He will take care of me. Period.
How has your family supported you?
Oh Yes ! Without my parents and sister raising me unconditionally with acceptance and love, I wouldn’t be here alive and well. I was a pampered, loved and an over protected child. In fact, I have been too protected, lest I had seizures here and there. My disorder was never hidden from the world as a ‘stigma’, even in those 80s era. Even while I was writing this book, my family has been saying it’s my best piece of work. Of course, as always I don’t believe them ! My 84 year old army veteran father and my 22 year old doctor daughter are my worst critics of my work and when they approve my work I know I have passed. They take good care of me and together we have adopted a dog who has epilepsy too.
Were you offered counseling by doctor?
No Never felt the need I guess…I was and still am a very lively person who takes life as it comes and believes LIVE NOW as often tomorrow never comes! Yes, I do have my very low moments, like everyone does, but for that I have good friends to talk to, share a tear or laughter with or read a book or watch a movie and the moment passes by
How do your friends treat you ? Are you isolated?
My circle of friends is very small as very few really understand my medical condition. I am a very giving person who trusts easily but once you break my trust and mock my health, you will not be able to come back in my life again no matter how hard you try. The few friends I have, they have stood by me through thick and thin and would always find me standing close to them, no matter in which condition I am in.
Please tell us about your book ‘Of Epilepsy Butterflies’. What prompted you to write it? How has the response been to the book?
The lack of awareness about epilepsy i.e., mirgee in our country and the stigma it carries, made me pen this book. I was in the middle of writing a love story, when a friend’s young son passed away due to SUDEP ( Sudden Unexpected Death In Epilepsy ) and at 50 years of age, it made me realize, next could be me, as I also have diabetes and hypertension. So, the research began to gather epilepsy warriors who were willing to share their stories to motivate people to come out of their shells and live life with no bindings. I have also written a few fictional stories which non epileptic people can understand and relate to and feel what we PWE ( people with epilepsy ) undergo. Few talented poets have contributed their poems in this beautiful anthology too. The response of the book has been inspiring; to the extent, that I am now getting it translated it into Hindi language so it reaches a wider audience and our message of epilepsy can reach far and wide and people can accept this disorder as any other normal disease.
How else are you helping others with epilepsy? What is motivating you daily despite your condition?
After the epilepsy book was released online in November 2020, I also launched a helpline phone number where patients could call me and talk to me if need be. The stigma of epilepsy is so deep, that sometimes family members don’t let them speak or share about the disorder. So I launched a WhatsApp number where I regularly update motivational messages and educate people about epilepsy. Slowly, I am seeing people are coming out of their shells and approaching me to be interviewed on my Facebook wall…they are willing to talk about their epilepsy journeys, after reading about the epilepsy warriors in the book. When I wake up everyday, I hope that I have managed to change even one life. That gives me one more reason to live another day happily and all the tiredness and fatigue of my own body seem to take a back seat.
