Skip to main content
Submitted by PatientsEngage on 26 March 2016

Do not let epilepsy scare your dreams away.

This spunky advice comes from 25-year-old Ishira Bubber as she recounts her struggle with epilepsy, unpredictable seizures, loss of childhood and dependence on dozen tablets.

Have you ever wondered what it would feel like, being alive, but not living for a few seconds? Trying to remember what happened, but just cannot. How many of you have experienced this? I have. Not once, not twice, but many times; sometimes 100 times a day

At the age of 11, while I was on holiday with my parents, I started to blank out. When my dad questioned me I was unable to answer; if my mother called out my name, I could not hear her. As this continued for quite sometime, my father decided it was time to make a visit to the doctor. We visited a neurologist and I was diagnosed with a type of epilepsy called Jeavons Syndrome. 

The ages from 11 to 21 are the most crucial in a person’s life. They shape the way he or she grows into an adult affecting the rest of their life; that perilous stretch of time was not as beautiful as I expected. I do not even remember most of my childhood for that matter. When I was 11, I was put onto 10 tablets a day and by the age of 17 I was on 29, all to prevent seizures: none of which, worked! At the age of 16, I was put onto a medication whose side effects put me in awe of suicide (suicide ideation). As I refused to tell people of my condition, they thought I was crazy. Unfortunately, we could not stop the medication immediately. 

The blanking out and medication, made me sleep upto 20 hours a day. After blanking out so many times a day, sometimes it felt like I was not living. I felt like a robot who was being operated on tablets. I couldn't recall things that happened in a day maybe because I had just survived half and because I was living in complete denial of my condition. I did not have the strength to face upto the fact that I do suffer from this condition and things just might get better in time. I was busy caught up in a rut blaming myself and everyone around me for my medical condition. Like any other, I wish I remembered how I spent my childhood days but I do not. 

However, my parents did everything to help me live a childhood like any other. It was difficult at times especially when I was in my "teens". I had to change my school as I found it difficult to cope with my studies. I had become a rebellious child. I wanted to go out of town with my friends, go away far somewhere where no one could find me and when I heard my friends laughing and talking about their lives all I could think of is my medical condition. I was living a facade, a complete lie. 

I was always ashamed of my medical condition because I saw it as a super-viral stigma that made me feel horribly different from everyone else. There were times I was asked to smell a shoe in order to stop an epileptic attack from happening; imposed by people who didn’t know any better; and there were times where I was labeled mentally sick! Many of the people I met thought I was trying to scare them because of their lack of knowledge about epilepsy. I have suffered Grand Mal seizures too; they were not very pretty.

When I was in undergrad, two professors from my University called my parents and I. They told us that I should just do my Diploma and leave the University as I was “sick and disturbed” and “could not achieve a Bachelor’s degree”. Until today, the professors fail to admit what they proclaimed earlier; I do not expect them to.  

At the age of 20, I applied for a beauty pagent in Mumbai where women from all around India participate and the top 20 contestants are selected to train for Miss Universe. I got an email saying I was “selected in the top 25 and if a contestant from the top 20 backed out, I would be their preference (like that would happen!). Obviously, I was devastated. A week later I learnt from a friend that I had not been accepted due to my medical condition.

Now what did I do? Cry? Try to hurt myself ? No. I proved everyone wrong. I decided to be a winner, aimed for success and graduated with a distinction and a “most improved student” award in the final year. The unsavoury past got wrapped up as cargo on a rocket into space: that aspect of my previous incarnation was no longer a cancer on my psyche. It had been obliterated. Thereafter, I went to London and completed my M.Sc. in Marketing Communications. In September 2015, I, along with my professor and colleague, were awarded the “Best Paper Award in Management and Business Economics” at the XXIV AEDEM International Conference held in London. 

It has been a year now that I have been back from London to Mumbai, my home town.  Everything has changed in terms of my relationship with people as well as, I, as a person. 

I love spending time with my family, I try to write for atleast one hour everyday, read articles on epilepsy and businesses, am learning martial arts and hope to meet as many people as I can until I am here. 

I have now been seizure-free for a year and a half and look forward to being that way forever. What I do know is that medication is now a part of me. My medication has not just disappeared into thin air. I am now on 11 tablets a day. It hurts, but I have ACCEPTED the fact that I suffer from this condition and that I have to live with it, no longer as a victim, but as a victor, for defeat, in any form, is not death. This, enables me to find happiness and success; I dream and I dare, to achieve much more in the many decades ahead of me. My father tells me that everything in life is a choice: I can choose to be happy, or choose to be sad; I can choose to win, or to lose; to live, or to die. I choose life as a winner against all the ups and downs that might come my way. 

I am now re-living my childhood. I am now starting to do things I never did earlier like learning math and other subjects that I had to drop in school. I am also learning activities like martial arts and am more open to people entering my life. I have no longer shut myself from the world as I have come to realize this life is to short to sit and cry over something that is not in your hands to control.    

I have no definite plans for a source of income yet. At this point of time in my life I would not like to shut out any opportunity that comes my way. However, in the future I would like to open a forum for young children and adolescents who suffer from epilepsy and would like to start a campaign for abused women. 

Also, I plan to do an MBA course, as it will give me business background which would help me achieve my dreams of opening a forum for children and adolescents who suffer from epilepsy as well starting a campaign for abused women.

Today, after being epileptic for 14 years, I choose to tell everyone my story without being ashamed of it. You too can achieve what you desire. Do not consider epilepsy an obstacle to achieving what you desire. Cultivate the will to win, embolden your heart, and set your mind to achieve the things you have never dreamt of. Nurture and nourish yourself with a philosophy of life that fills you with confidence: it comes from a self-believe born of the knowledge that no matter what happens, you are armed with that unshakable believe that you will come through just fine. Adversity can be an asset, for it is from our failures that we learn best.

Shame, fear, hatred and jealousy are negative feelings that tend to prey upon us. We conspire against ourselves and wail: WHY ME ? Why can’t I drink alcohol? Why did my friends leave me? Why am I different?  Why can’t I……. !

No! Never settle for less than you can be. It is your birthright to move ahead, from hope to fulfillment. If you think you can’t, that thought alone can assault your prospects. Ignore these negative feelings and stake your claim at the positives.

The world is within you. So is your heart, your brain, your spirit, and your soul. What a combination! Now go out and WIN!

Condition