Jennifer Reyes Passaglia
It was 2003, and I was alone experiencing my first seizure. Feeling dizzy and eventually, I fell flat on my face. When I finally came to, I found that I was lying on the floor surrounded by an EMT, fireman, and policeman all asking me a series of questions, which of course, I was unable to answer. Completely unaware of what just happened, I began to fill with fear. All I remember was that my brain was foggy and I had no idea where I was. Soon after I was in an ambulance. I have never been so scared in all my life. Rushed to the emergency room where now the medical staff begins to run tests to determine exactly what just occurred.
Diagnosis? Genetic Epilepsy, wait, what? What is happening right now? How could this be? I am 18 years old and I have never had a seizure in my life. I had so many questions however in the ER the doctors are there to tend to the immediate issue at hand and send me on my way. However, this event forever changed the trajectory of my life. It was then explained to me that I was diagnosed with Genetic Epilepsy specifically prone to Tonic-clonic seizures; formerly known as Grand Mal Seizures. 'Tonic' is defined as stiffening and 'clonic' is defined as rhythmical jerking. The tonic phase happens first; my muscles stiffen and I bite my inner cheeks and my tongue during this phase. After the tonic phase passes, I transition to the clonic phase. My arms and legs begin to flail. I lose consciousness and I am completely unaware of what my body has been through, it is a surreal and humbling experience.
I was then prescribed an anti-convulsant medication to manage the seizures.
To my shock & horror the doctor informs me with that I will probably have to take this medication until I reach the age of menopause when I would eventually grow out of it just as I grew into it. Menopause???? Looking forward to menopause was not on my short bucket list I was merely an 18-year-old girl.
Here my journey begins with epilepsy and now on a path where I could choose to be a victim or choose to be a victor.
Over the next decade, It was a struggle trying out different medications trying to figure out which was best for me. My goal, of course, was to prevent my seizures by finding the perfect cocktails of medications proved daunting. A rollercoaster of emotions to say the least when I would experience breakthrough seizures because my medication was not working effectively. There were many challenges during this phase. My driver's license was revoked several times, and my work hours had to be accommodated. This was devasting for me, not only was my health a fulltime job and main focus, now my independence was taken from me.
Eventually, I got to a place in my life where the medications were working and I began to live seizure free. Close to 4 years without an episode!! It was so empowering. I felt top of the world! I thought I beat this monster into submission and was ready to get on with my life with the seizures front and center.
However, in 2017 my epilepsy kicked my ass with 3 aggressive seizures in 6 months.
Confused, frustrated and bitter I realized I needed support beyond my family and friends. I have never taken advantage of the resources which were made available to me. But it was time. During my research, I came across forums, groups, and discussions online for the Epilepsy community. I was delighted, to find a forum and a community where I would feel heard and supported. Every discussion felt like they were talking to me and about me, very familiar. They were discussing the very things I I was feeling and have experienced. It made me realize I am not alone.
I knew in heart that not only did I need to participate in these groups, but I also wanted to be a leader. This is why I decided to participate in the Walk to End Epilepsy. Once the Walk was completed, I realized just how important community support really is and the effect it can have on others. I have met so many people with epilepsy since that event & I was so inspired by their stories.
My goal is to educate and spread Epilepsy Awareness. If I can teach just one person the Basics of Seizure First Aid I would have made a difference.
Thank you for visiting my page. Your support helps people with Epilepsy get ON THEIR WAY TO GREATNESS!
So that ONE DAY WE CAN SAY I USED TO HAVE EPILEPSY!