Empowered by Epilepsy-Jay's Journey
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"My name is Jay Hennessy and I have Intractable Epilepsy. I was diagnosed in early 2010 after a motorcycle accident on a dirt bike not wearing a helmet. I had an unexpected tonic-clonic grand mal seizure 10 days after my accident lasting 22 minutes. Then, after arriving at hospital, in trauma room, I had a second same seizure lasting about half as long. Once I came to, I was diagnosed with having Epilepsy. My journey begins! Now this journey will always be on foot or bicycle for me....... Once being diagnosed, the first part is revocation of your driver’s license... And in my case I will never drive again, so I have a great bike.
Since being diagnosed with Epilepsy, it has taken about 2 years to be correctly diagnosed as having Intractable Epilepsy, which you can say allows me to build a longer stronger highway to journey. It has taken me these 5 years so far to build an amazing support team of family, friends, community and specialized Physicians in the US and South Africa to assist me on my journey.
I must confess at first, I was completely lost, confused, and emotionless. I shut everyone out. I was and still am very fearful of the worst SUDEP. I didn't believe in myself or anything positive that could be ahead for me. All I saw daily was the darkest of despair. Everything was black to me.
Epilepsy had now taken complete control of me. My seizures were occurring on average 100 or more daily, causing my neck to be broken twice having fusions of C4-7. I had black eyes, bloody noses, biting tongue severely, black and blues from head to toes, memory loss, vision loss and hearing loss.
I've had a surgical implant called VNS Vagal Nerve Stimulator, which is implanted just under my left clavicle bone with a fiber optics cord that connects to my Vagal Nerve. This sends small amounts of electrical charges to the Vagal Nerve to reduce and assist in controlling the severity of occurring seizures. My VNS implant has had an immediate impact, not only reducing the number of seizures I am having, but also the severity of seizures, while also reducing the post-dictal state after my seizures.
For a lengthy stretch of time, I lived in my reality of Epilepsy's Dead End! My daily routine was - whether in the United States or in South Africa - taking my seizure medication for breakfast, lunch and dinner. All side effects of these are uncomfortable at low dosages by themselves. For me, being at the FDA maximum allowable limit for all of them, challenge is an understatement. Most days would be spent in seclusion, severely depressed because of these effects.
Finally, enough was enough. Life was way too beautiful to be stuck in the mud. I was taking my life back. I've always had great strengths to leverage. Epilepsy will never take those from me. So with this Pen to Paper, I'm releasing the past! I'm on a chosen path building a highway to journey."- Jay
Since being diagnosed with Epilepsy, it has taken about 2 years to be correctly diagnosed as having Intractable Epilepsy, which you can say allows me to build a longer stronger highway to journey. It has taken me these 5 years so far to build an amazing support team of family, friends, community and specialized Physicians in the US and South Africa to assist me on my journey.
I must confess at first, I was completely lost, confused, and emotionless. I shut everyone out. I was and still am very fearful of the worst SUDEP. I didn't believe in myself or anything positive that could be ahead for me. All I saw daily was the darkest of despair. Everything was black to me.
Epilepsy had now taken complete control of me. My seizures were occurring on average 100 or more daily, causing my neck to be broken twice having fusions of C4-7. I had black eyes, bloody noses, biting tongue severely, black and blues from head to toes, memory loss, vision loss and hearing loss.
I've had a surgical implant called VNS Vagal Nerve Stimulator, which is implanted just under my left clavicle bone with a fiber optics cord that connects to my Vagal Nerve. This sends small amounts of electrical charges to the Vagal Nerve to reduce and assist in controlling the severity of occurring seizures. My VNS implant has had an immediate impact, not only reducing the number of seizures I am having, but also the severity of seizures, while also reducing the post-dictal state after my seizures.
For a lengthy stretch of time, I lived in my reality of Epilepsy's Dead End! My daily routine was - whether in the United States or in South Africa - taking my seizure medication for breakfast, lunch and dinner. All side effects of these are uncomfortable at low dosages by themselves. For me, being at the FDA maximum allowable limit for all of them, challenge is an understatement. Most days would be spent in seclusion, severely depressed because of these effects.
Finally, enough was enough. Life was way too beautiful to be stuck in the mud. I was taking my life back. I've always had great strengths to leverage. Epilepsy will never take those from me. So with this Pen to Paper, I'm releasing the past! I'm on a chosen path building a highway to journey."- Jay
Organizer
Erin Efof
Organizer
Fruit Cove, FL
