December 2023 Epilepsy Star: For this issue, Mr. Michael J. Hickey is recognized as an Epilepsy Star for his volunteer work and dedication to the epilepsy community!
December Epilepsy Star: For this issue, we are very pleased to have Epilepsy Star. Michael J. Hickey, who was nominated by Epilepsy Services of New Jersey’s Andrea Racioppo for his remarkable and dedicated work as an epilepsy advocate, supporter, volunteer, fundraiser, and much more! Over the years, he has been awarded notable recognitions including the Outstanding Volunteer of the Year and the Legacy Volunteer award at The Family Resource Network Impact Awards. We invite you to read all about Mr. Hickey’s life, his epilepsy journey, and his tireless efforts to improve the lives of those living with epilepsy. Congratulations to Mr. Hickey, epilepsy star!
How did it start and how has it been a part of your life?
Epilepsy has been a part of my life ever since my first seizure 39 years ago and has impacted me in many different ways. My first known seizure came about September 9, 1984, in my junior year of high school, 4th period English class. I woke up in the nurses office without any knowledge of what had just happened. Most of my seizures were complex-partial seizures. The seizure activity increased over time to a point where, in college, I had multiple seizures every two weeks with others just before exams. The reason for the seizures could not be identified but from my experiences at college, we believe it was either stress, lack of sleep, or both.
How has epilepsy touched your life?
The biggest and most immediate impact was not being able to drive. Luckly, I had older siblings who could drive me, if needed. Nine years later, after successful brain surgery to control my seizures, I wanted to educate others about epilepsy and let others know they were not alone. I reached out to the Epilepsy Foundation of New Jersey k/n/a Epilepsy Services of NJ (ESNJ) for guidance to hold a support group in the northern NJ area. The support group began in 1995 and continued for approximately eight years, first in a church and later in Valley Hospital, Ridgewood, NJ. Liza Gundell, current CEO, of the Family Resource Network, was very helpful when I first contacted the ESNJ in 1995 and continues to be of great supporter today.
Tell us about how you have overcome some of your particular epilepsy-related challenges?
With a lot of Mom’s love and support, and sister and brothers too. Other than losing my driver’s license and a lifeguard job, I would not let my seizures hold me back. In high school I ran cross country and track, played in the marching and concert band, managed the girls’ basketball team. In college, at Hofstra University, I entered under P.H.E.D. (Program for the Higher Education of the Disabled). I took twelve credits instead of fifteen, thinking less stress would mean less seizures. Wrong! I joined the Program Board, the club that planned most of the extra-curricular events and managed women’s volleyball. In between these activities, and sometimes during, I had seizures. But with the support of my college friends, Public Safety, and the Hofstra medical staff, I recovered from most seizures and returned to classes.
My Mom and I spent many days/weeks at Helen Hayes Hospital (HHH), in West Haverstraw, NY and Columbia Presbyterian Medical Center (CPMC), in NYC, for monitoring, scans, depth electrodes and various surgeries. We also attended epilepsy support groups at HHH and in NYC.
In my junior year, I had brain surgery, which focused in the front left temporal lobe. Exactly one month after surgery, the seizures returned. Immediately after graduation, I went back to CPMC for additional depth electrode testing which led right into a second surgery (54 days in Jan-Feb. 1993), this time focused in the rear left temporal lobe/occipital lobe area. A year and a half later, my driver’s license was reinstated.
You have volunteered your time for epilepsy which is why you have been nominated for this recognition. Tell us about this work?
My current volunteer activities with ESNJ includes the Community Impact Board, Paint the Pony Purple, Day at the Beach, and Walk for One. Through my employer, AT&T and the AT&T NJ Pioneers, I invite my co-workers to volunteer and donate to the different ESNJ causes.
What do you look forward to seeing for the epilepsy community in the future?
More public awareness throughout New Jersey. I am always willing to speak with others who may be considering brain surgery and hope to begin a support group in the Monmouth County area.
I also hope to see and be part of more public awareness/education about epilepsy to the public and those impacted, both directly and indirectly, at all ages – in school, in the workplace and in later stages of life.
Anything else that has not been asked and that you would like to talk about, please feel free to add.
In the first few years of having seizures, I felt like the only person with the disorder. Afte the successful brain, I went back to school, received a Paralegal Certificate from Fairleigh Dickinson University and work for AT&T, in their legal department (going on 26+ years). Last month I was promoted to Lead Paralegal and manage all the easement, foreclosure and right-of-way litigation matters.
Past volunteer activities with ESNJ, which included Camp NOVA, Project H.O.P.E. (Helping Other People with Epilepsy), NY and NJ epilepsy conferences, the Legislative Advocacy Network and “Bounce Out the Stigma” with Mighty Mike Simmel.
At the 2001 Annual Meeting and Awards Dinner of the Epilepsy Foundation of New Jersey I received the distinguished award of Outstanding Volunteer of the Year. In 2021, I receive the distinguished Legacy Volunteer Award, at The Family Resource Network IMPACT AWARDS.
And last, but certainly not least, I married Debbie in 2006; she has been a huge support in all of my ESNJ endeavors and also is an active participant in many of the projects I mentioned.
