Jennifer Reyes Passaglia
It was 2003 when I experienced my first seizure.
I was out and about running errands on what would have been a normal day for a college student. Standing in line at my local pharmacy I found myself starring down the aisle at the products on the shelf when suddenly I felt dizzy, the next thing you know I was flat on my face. When I finally came to, I found that I was lying on the floor surrounded by an EMT, a fireman, and a policeman all asking me a series of questions, which of course, I was unable to answer.
Completely unaware of what just occurred I was consumed with fear. My foggy brain had me feeling disoriented and confused having no idea where I was. Soon after I was in an ambulance never been so scared in all my life. I was rushed to the emergency room where medical staff then begins to run tests to determine what had happened to me.
Diagnosis? Late On-set Genetic Epilepsy. "Wait, what?" I was in shock. "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, while in the ER the doctors are only there to tend to the immediate issue at hand. So once I seemed ok they sent me on my way and I was referred to consult with a neurologist. However, this event forever changed the trajectory of my life. After several visits with my neurologist, 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-epileptic medication to manage the seizures.
To my shock & horror, the doctor informs me that I will probably have to take this medication until I reach the age of menopause, a period of my life where I could possibly grow out of it. Looking forward to menopause was not on my shortlist, I was merely an 18-year-old girl.
Here is where my journey begins with epilepsy and now I am on a path where I can either choose to be a victim or choose to be a victor.
Over the next decade, It was a struggle managing the different medications trying to figure out which was best for me. My goal, of course, was to prevent my seizures by finding the perfect cocktail of medications and it proved daunting. A rollercoaster of emotions to say the least.
However, until we could get the seizures under control I would experience breakthrough seizures. There were many challenges during this phase. My driver's license was revoked several times and my work hours had to be accommodated. As a college student, I was heartbroken when I had to withdraw from my current college semester so that I could focus on my health. This was devastating for me, not only was my health a fulltime job and main focus, now my independence was taken from me too.
Eventually, I got to a place in my life where the medications were working and I began to live a seizure-free life. Close to 4 years without an episode!! It was so empowering. I felt on top of the world! I thought I beat this monster into submission and was ready to get on with my life with the seizures behind me and under control.
Unfortunately, in 2017 my epilepsy shocked me to my core with 3 aggressive seizures within 6 months.
Confused, frustrated and bitter I realized I needed support beyond my family and friends. I also realized that I had not 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 safe place where I felt heard and supported. Every discussion seemed like they were talking to me and about me, it was very familiar. They were discussing the very things I was feeling and experiencing. It made me realize I was 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 become an epilepsy advocate. My first event 2017 Walk to End Epilepsy I participated as a team leader and our team name was "On Our Way to Greatness" and we raised $5k and I was inspired! Once the walk was completed, I realized just how important community support really is and the effect it can have on others. It motivated me to create my own fundraiser. In 2018 I led the first Zumba Epilepsy Fundraiser with The Epilepsy Foundation of Northern California.
Just like the epilepsy community brings people together the Zumba community does that as well and I decided to put these two communities together for the greater good.
My goal is to educate, spread epilepsy awareness, and help destigmatize this invisible disorder. If I can teach just one person the basics of seizure first aid I would have made a difference. I aspire to help those better understand this disorder.
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 WE USED TO HAVE EPILEPSY!