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Sheri’s Story: Learning to Live All Over with Refractory Epilepsy

The personal epilepsy story below was submitted by Sheri. She shows how life is possible after a diagnosis of refractory epilepsy. Encouraging comments are welcome!

Sheri’s Story

I was diagnosed with refractory epilepsy in my late 20’s, there was no known cause or reason. It came from nowhere. For about a month the strange auras (mostly in the shower), then telling my husband about the odd experience. We both chalked it up to long hours at work and feeling generally overtired. We monitored the auras (at the time we didn’t know that’s what they were). Finally one evening we were home watching a quiet movie and I was sitting on the floor, he on the couch behind me. I felt the aura, couldn’t speak, apparently seized, and when I awoke there was an ambulance at my home. A scary feeling.

Flash forward 30 years and several hundred seizures later, I’ve tried every medication without success (hence the word Intractable). I now have a VNS or Vagus Nerve Stimulator implant and still seize. I was forced to leave behind a successful career and I can no longer drive.

The Transportation Issue

While I have an excellent outlook about the seizures themselves, ie: I am not afraid to venture out alone as this is just a part of life. I am having a harder time overcoming the work/driving loss. I live in a remote area without public transportation, I want to volunteer in lieu of working, perhaps for the Epilepsy Foundation or the Make A Wish Foundation, but transportation remains an issue.

It is important to continue to keep a smile and work on creative ways to find transportation for those such as myself. There is always that stigma we must overcome and I will lead that charge.

Your Turn

What transportation options are available in your area?

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