Being seizure free has given a whole new meaning to life. I feel reborn, taking chances I never believed I could. I’ve been given the opportunity for a new beginning. I celebrated a huge milestone for me, 5 years of seizure freedom, on October 29, 2020. Now, I enjoy living in the present moment with nothing weighing me down.
Before my seizures started, I once knew what it was like to be independent. I lost that in a split second. It changed my life because it made me feel helpless in ways I never used to feel before. I was diagnosed with epilepsy at the age of 13 and my life took a huge turn from there. I was living with the constant fear of having a seizure at anytime and anywhere because my epilepsy wasn’t controlled by medication.
My teenage years were the peak. Sometimes I’d have 4-5 seizures a day. With time they became less frequent, but still never went away. I was given the permission to drive for a couple of years, but then I had to give that up too. The day I gave up my license was the day I felt completely disabled and it changed my whole lifestyle. First my independence was lost, and then my license.
In the late 90s, I was told that I was a candidate for surgery, and as great as that was at the time, I decided to take my chances with medication. I never lost hope until I had taken all the epilepsy medications available. I turned to alternative medicine and made logs of what may have triggered my seizures, but that treatment plan didn’t work for me either. I had no other choice but to be dependent on others. As difficult as that was, my husband, family and friends made it possible for me to not feel like a burden with their unconditional love, care, and support. My 2 boys, very young at the time, used to help me if I had a seizure in their presence. It was heartbreaking to see them do that and for them to see me in that state.
My only remaining hope was to finally have that surgery: amygdalohippocampectomy. It feels amazing now to see my children so relieved and to hear the excitement in their voices when they tell their friends about how their mom no longer has seizures.
The day I got my license back was the day I felt completely liberated. I׳m now as free as a bird gliding in the wonders of everything the blue sky is full of. I’m exploring all the new possibilities that life has to offer. I’ve become fearless and have been given the freedom I’ve wanted for 25 years. I am my own person now, and it feels incredible to be where I am today.
I will do everything in my power to support people who live with epilepsy in any possible way that I can.
When I became seizure free, it inspired me to try and make a difference in my community due to the stigma that epilepsy creates. To support the cause, I held activities on Purple Day®. In November during National Epilepsy Awareness Month, I designed educational flyers and banners, all in purple, to educate the public and placed them in schools, nurseries, clinics, and conferences. I also volunteered at Eyal Israeli Epilepsy Association and wrote all the English content for their website.
Even the simplest act can make a difference in someone else’s life and I will continue trying to do just that.
Helping me survive all those years was my sister, who is my guardian angel; my loving mom and dad, who always went above and beyond for me; and my loving, caring husband and 2 boys, who are my saviors. Each one of them has given me unconditional love, support, strength and the hope that I would one day be seizure free. They continued this journey with me until that day finally came. Not to be forgotten, thank you to my precious extended family members, cherished friends, neurologist, attunement practitioner and neurosurgeon who have always been there for me too. I am very grateful and richly blessed to have them all in my life. Thank you.
Never give up hope and always have faith in yourself and that you will one day get there. I fought my battle with epilepsy and by no means allowed it to defeat me. I now celebrate my birthday on the same day I had my surgery!
Janine has a Bachelor of Science degree in communication from University of Miami, FL. She was on the varsity soccer team there. She plays all sports, including basketball, soccer, volleyball, and squash. She also swims and let’s nothing get in her way.