Jon’s Story

I was four years old when I had a high fever leading to a complex partial seizure lasting over ten hours. My parents did not know who I would be when I regained consciousness. Unfortunately the fever caused permanent damage to my brain and the medication wiped out my personality for four years. Today we know that I continued to have simple seizures, though back in the 1960s there were only two known types; petit and grand-mal. So no one was concerned.

The seizures returned when I was in college and suffered a substantial head injury effecting the same area of the brain as the fever. I was told never to share my story about epilepsy with anyone due to the high level of discrimination and the stigmas attached with it.

Seems a medication worked well for several years, then I had breakthrough seizures. During this period, new medications were being developed and became available just in time for me. Sometimes medications changed my personality. In one case I became very angry (for no reason) with my two year old son and was immediately taken off the medication.

After many years, medications were no longer effective and surgery was the only option. I was on the edge of isolation and depression, so I elected to have most of my left hippocampus and a large section of my temporal lobe removed, impacting my engineering skills.

Recovery took ten years with the last five involving going back to college and getting a Masters degree. I would have failed out were it not for my first professor, whose parent had seizures. With each year I needed less disability support. Working hard created new pathways in my brain and it was easier to access my memories.

I became a mentor and was motivated by the people and families I met who struggled with epilepsy. It had taken many years for me to share my story and often it scared me. My experience had more meaning as I realized it was a source of hope and perseverance for others. Two years ago, my neighbor started having seizures and I became the primary caregiver. It was hard to watch them have prolonged seizures and severe reactions to some medications.

The more people I met who were struggling with seizures, the more I became inspired to share my experience. This year I had a book published (Sailing through the Storms of Seizures) that provides education for those living with seizures and their caregivers. Information about seizure types and classification is also provided. My experience and those who cared for me is included, along with key points about first aid, caregiver considerations, and the perspective of the person with seizures. Support organizations are also listed.

I finally reached the point when it was time to break through the stigmas and share my experience to provide hope to others.