This is the last in the seven-part feature series, She Slays.
Hello, my name is Mansi and I am a 31-years-old epilepsy survivor from New Delhi. After years of going through seizures and nightmarish episodes, I have decided to share my ordeal with all of you.
I was this happy and cheerful child who was raised in a loving and supportive environment. Being the eldest of all the siblings, I felt a great deal of responsibility for them.
It was a similar moment of sibling camaraderie when we were all watching a cartoon show together. I was 13 back then. I remember laughing at the cartoon, when all of a sudden, I felt as if the television was pulling me in and I helplessly was getting sucked in.
The initial shock after epileptic diagnosis
The next thing I remember is opening my eyes, as I lay on the bed surrounded by my family and my neighbor, who happened to be a nurse. My sister told me that I had fainted while watching TV and there was froth too coming out of my mouth.
The nurse cum neighbor diagnosed it to be an epileptic seizure. This was a monumental shock for my entire family, for we had never experienced anything like this before.This experience opened a door to research about epilepsy. We learned that epilepsy means an electrical imbalance in the brain where a group of neurons start firing at the same time and this, in turn, confuses your body about which muscle to use and which one to not.
All the muscles start jerking in an extreme manner during a seizure. When the attack gets over, your body blanks out and you feel deprived of energy.
Life changes post diagnosis
When my diagnosis got confirmed for epilepsy, I had to change a lot of doctors before I found the right one, for most of the medications prescribed by them didn’t work for me.
Who knew that finding the right medication would actually be a hurdle and the wrong one could have severe side effects as well? One such incident, as I recall, was when I was in 9th grade and I went through bouts of momentary dementia.
I realized that I was not able to retain information like other kids and I felt bad about the fact that it was only happening to me. I was forced to change my doctor once again and this time, it worked in my favor.
I started feeling better and when I reached grade 12th, I stopped visiting the doctor and also discontinued my medicines under the confidence that now I was absolutely fine. However, little did I know that this wasn’t the right decision at all. It just worsened my condition.
The slow acceptance of my new ‘normal’
I was a sophomore at an engineering college when one day, I had a sudden seizure attack in my sleep. This was the first time I had had an attack, while unconscious and this incident shook me.
It was only when I was writing an entrance paper, soon afterward that I realized the extent of my disease. I was writing the exam when suddenly I heard a loud thud next to me. A girl had fallen down on the floor and her head was bleeding as a result of the fall. She had froth coming out of her mouth and she was shivering badly.
Even though I knew exactly how she was feeling, I couldn’t muster the courage to tell people around her to not panic and to deal with it patiently. When she was taken to medical care and we got done with our exam, I went back to my room and decided to write about how I was feeling.
To my surprise, I ended up filling a full notebook of my feelings, especially about habitually blaming my parents for being over-protective and my self-pity for not being able to live a normal life like my friends.
Through this incident, life had finally shown me the mirror and I realized how people close to me felt when they would see me in such a situation. That moment changed my perception of the way I was living my life and gave me a new approach to look at my condition differently.
It’s time to move forward with Epilepsy
Today, even though I am still on medication and follow a controlled lifestyle, I am happy that I have accepted the way I am and am not fighting with the disease anymore. In a way, I have taken away the control it held over me.
I avoid crowded places or bright lights, take my medication and spread awareness about epilepsy wherever and whenever I can. This is how I have learned to live with it and make peace with it. While it cannot be cured, it can flow along with me and my journey.
Be it epilepsy or any other illness, if we learn to make peace with what is happening to us, we will be able to handle it better. I hope with this, I am able to send across the right message to everyone who feels like it’s the end of the world,it might just be a new beginning.