My journey with epilepsy began in 7th grade when I fell down on the floor after waking up at 5 o’clock in the morning. I finally recovered and was healthy again, but my health and my life took an unexpected turn. The next year when I was 12 years old, I experienced my second seizure, though at the time we didn’t know what it was. My left side would tense up with a stabbing, burning feeling, giving me no control over my body or the ability to speak.
Then after being seizure-free for 3 years, I again experienced a seizure – my third. At that time my head was injured, so my parents immediately hospitalized me. But the doctor could not identify that what I had was a seizure. We visited doctor after doctor, none of whom could offer any explanations or answers to what these episodes were.
My parents and I became very worried about what these “episodes” could be. We thought, “This is just a kinda weakness problem.” These episodes started to become less and less frequent until they were dormant for a few years.
Nobody was aware that one day this problem would grow to become more and more painful. At one point, when I was at the important stage of my career – the final year of my schooling – I had a grand mal seizure and I was once again blindsided. To date, this seizure was the most terrifying thing that I’ve ever experienced. This was incredibly violent and dangerous, woke up screaming on the floor disoriented and in pain, with lots of saliva on my top and no control over my body as it frantically and violently flung around. My roommates were completely shocked and were wiping away their tears while consoling me to come out of that bizarre incident. This seizure left me physically, mentally, and emotionally exhausted.
Finally, I met someone who told me what this episode was. That someone was a neurologist, who told me I would have to go through some tests, like MRIs and EEGs. As my parents were not with me, I decided to complete all the medical formalities at a city hospital nearby my hometown. Finally, I was diagnosed with a seizure disorder, but only because of symptoms I explained to the doctor.
I am among the 60% of patients who still don’t know the cause of their epilepsy. It’s been half a year today that I am taking medicines continuously (taking bunks for some days?). With this and a severe lack of sleep, normal things became increasingly difficult for me. I have started to experience short term memory loss and difficulty focusing, so my study routine has begun to suffer. This is one of the hardest things for me to cope with. It is ridiculously frustrating to see myself continually slip even though I didn’t change my work ethic. If anything, I can work for 1 to 2 hrs as hard as I used to. It is devastating for me to accept this, especially when it came time to apply for the best job that I deserve. The combination of physical, mental, and emotional exhaustion on top of my struggles took a great toll on my mental health.
I became depressed, struggled with serious self-harm, and lost my joy in living. The little things began to add up as well, such as the heartbreak of watching my sister get her driver’s license when I was medically not allowed to get one, seeing my surrounding people treat me differently after finding out about my medical condition and mental health issues, and the constant frustration of going to doctor months after months, getting test after test done, and making no progress in getting a diagnosis or finding anything that helped.
I started hating people and feeling every second that no one could understand what I am going through, and I feet so lonely, lost, and confused (except for the one person who has always been my strongest side, always motivating me not to lose hope).
Now, I have started to accept this, and my life started to take an upturn.
Even though this is the darkest time of my life, I struggled every day to not give up on life. Here I am today, being seizure-free for many days. Though I still struggle with a lack of taste and shivering every morning, I don’t let that stop me from reaching my goals. I’ve rediscovered happiness and will never let it slip away from my life again.
I am accepting that I have epilepsy, and I want to make a change. I want to help raise awareness and break the stigma that surrounds epilepsy. One day, I hope we can find a cure for epilepsy. Epilepsy does not define me, and while I still struggle with feelings of insecurity and embarrassment along with the constant fear of having a seizure while doing something important (like working in my office or while having lunch or dinner in a restaurant) my epilepsy has made me stronger. It has made me into the person I am today. I’m so blessed to have had such a supportive family and friends along the way, and I will forever be thankful for my parents who never gave up on me. Living with epilepsy is far from easy, but all of us who have epilepsy should be proud of how strong we are to be able to live, fight, and succeed every day despite this disorder.
Love and take pride in who you are.