Jay’s Story

December 17, 2015

Jay’s Story

“My name is Jay Hennessy, I was diagnosed with Post Traumatic Epilepsy (PTE) from a Traumatic Brain Injury (TBI) in 2010, which marked the beginning of a significant journey in my life as I stand before you today.

Today, I am both humbled and honored to be a part of this journey. Humbled to be among the 5.3 million Americans currently living with Epilepsy and a long-term disability as a result of a TBI /PTE. Honored, as a veteran having served to be a part of a military legacy with my late grandparents, John Hennessy – Airborne Infantry Glider Division Private 2nd Class, who received three (3) Purple Hearts and John Sanvidge, US Navy Mechanist Mate 2nd Class. Both of whom have inspired me to align my past, present and future towards the research and education to further understand the long-term effects of a TBI/PTE, which has become the driving force for me seeking a cure.

My journey with Epilepsy began with a simple twist of fate as a result of a recreational motorcycle accident causing a Traumatic Brain Injury(TBI), which later manifested into Post Traumatic Epilepsy (PTE), a latency period of 10 days. Initially  diagnosed with Epilepsy, the two (2) year period following my accident rendered frequent uncontrollable status seizures resulting in fracturing my vertebrae C-4 – C-7, requiring surgery to repair with fusion/cages. During this period, the embarrassment of people, family, children, and friends witnessing my seizures had me paralyzed, scared and withdrawn. I choose seclusion. I accepted my illness, embraced it, and conceded to it. I allowed Epilepsy to control and dictate everything in my life. I lost belief in myself, feeling like Epilepsy took everything from me, my ability to love and all of the positives that were ahead of me. All I could see was the darkest of despair. I had succumbed to Epilepsy. Everything was black for me. Epilepsy took complete control of my life. My seizures were building even under current care to hundreds daily, causing further destruction of my soul and my physical well being. What does it look like? Black eyes, bloody noses, severe damage to my tongue, bruises from head to toe, memory loss, vision and hearing loss, and as embarrassing as it can be the loss of my bladder during seizures. I tried to accept the diagnoses, which were improbable to me early on; but deeply felt there has to be more that can be done.

Silence was no longer the answer for me. I had lost belief in myself. The therapeutic remedies with numerous changes were not effective and it was time to get some answers. As a result of the continued and uncontrollable severity of my Epilepsy during that two (2) year period, I was further diagnosed with Intractable Epilepsy – by my Surgeon who repaired my vertebrae (ironically not my neurologist) after discussing his concerns my next seizure could undo his work and cause me to become paralyzed. My surgeon’s foresight to refer me to an Eptiologist at a School of Medicine in Florida for improved care was a pivotal moment in my healing process. My next option was a Vagus Nerve Stimulator (VNS) a surgical implant along with three (3) therapeutic remedies all at the maximum FDA dosages. I assumed this would be my immediate savior. Although benefits were achieved, it was a lengthy and painful process getting to where I am today.

Now the real journey begins, my discovery process. What is Epilepsy? Why? At the onset, I had a complete lack of understanding, despair, and loss. Confessing even still at times, I am lost, confused, emotionless, and fearful. One cannot begin to comprehend conversations and terms focused on a better quality of life living with Epilepsy or having to face your own mortality with the possibility my life could end from the next seizure (SUDEP). Never seeing light again from the darkness of my next seizure is now my personal life with Epilepsy. This thought still never leaves my mind.

“Yes”, now I am proud to say Epilepsy is a part of my life – a dissipating part of me! Five (5) years into being diagnosed, I decided it was my time to shine again! I took back my life. See I’m  a leader a visionary. I see the day of a cure in front of me and I am going to contribute!

With support from my parents, family loved ones and a growing foundation of extended support from Epilepsy Foundation of Florida (EFOF) and The Epilepsy Foundation of America (EFOA), I advocate with my executive teams at a local and National level while lobbying for increased funding. I started to manifest into my true self a strong proponent seeking a cure.

This became my “Kairos” moment.

I realized my potential again. Putting pen to paper, I defined a definitive course of action. My direction was “about face”. I recognized Epilepsy was a blessing and I have an opportunity to contribute to all the TBI and PTE patients seeking our cure! I am a fighter in every sense. Now empowered by this new found realization, I am my own “keel” of my ships life journey. I’m physically active again, intellectually outreaching, and installing an open line of communication with my growing support team.

I started sharing my knowledge, self-experiences – this has become my way of achieving immortality. I judge my successes by what I lost to truly understand my purpose. My life is now lengthened with the understanding of grief for myself. This lesson of learning is now needed to be shared.

The EFOF and the EFOA as well as the Department of Defense Epilepsy Research Program have been life changing! New found confidences were realized. Leveraging all my strengths have become a great clearing house of information of my Epilepsy. I’m now a proponent of keeping everything in perspective. I realize now the importance of having Epilepsy, my life has been blessed. I will make a difference by improving quality of life, assisting in defining appropriate treatments during latentcy periods, and contributing for a cure is my life’s mission for millions of patients!

As we sit here on the precipice of finding a cure. I ask all of you to please join me in a moment of silence, for all the warriors of the past, present and future who have and will continue to encounter this disease (or face an injury resulting in the disease). May life rise up to meet each one of us on the road of our journey!”

Jay passed away on May 24, 2017 from complications related to epilepsy. 

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