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Any phrase, idea that helped you navigate life with epilepsy?

Posted by Chris Gautier, Volunteer Mentor @santosha, Jun 1 4:53am

Good Morning to All!
Has anyone in your life ever shared something with you that stayed with you — a phrase, an idea, a way of seeing things — that helped you navigate life with epilepsy?
It doesn't have to be profound or polished. Sometimes the simplest words land the deepest.
I'd love for this to become a little collection of wisdom we've gathered along the way — from all the people and places that have helped us keep going. Feel free to share as much or as little as you'd like.
Chris

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Profile picture for Chris Gautier, Volunteer Mentor
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Chris Gautier, Volunteer Mentor | @santosha | 1 day ago
In reply to @jakedduck1 "@santosha My parents, family and friends tried for a long time to make me understand that..." + (show)
Profile picture for Jake @jakedduck1

@santosha
My parents, family and friends tried for a long time to make me understand that epilepsy isn't as bad as I was making it out to be. I was so angry and resentful that I would never realize my dream of becoming a pilot or even driving. In high school I was told I could play the piano at chapel in my junior year but I was asked to leave school the year before because of relentless seizures. My music was very important to me. The loss of my ability to play was devastating, it's been the worst part of my journey. My friends and I used to say "It is what it is" and accept whatever and move on but it took 2 years until I could actually hear, say, and act on those words and truely move on.
Take care Chris,
Jake

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@jakedduck1
Hi Jake!
Thank you for sharing something so personal: the pilot dream, leaving school, and above all, the loss of your ability to dedicate yourself to music. Those were real and profound losses. I well imagine the anger and resentment you went through; they make complete sense.
What your story so beautifully shows is that outer support can only carry us as far as we are ready to let it in — and that the inner journey of truly accepting "it is what it is" is still ours to walk.
What helped you finally turn that corner and carry those words from your head into your heart?
Chris

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Profile picture for Chris Gautier, Volunteer Mentor
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Chris Gautier, Volunteer Mentor | @santosha | 23 hours ago
In reply to @dannoyes "@lisalucier @santosha @jakedduck1 @louissc as is so often the case with epilepsy, there’s a certain serendipity..." + (show)
Profile picture for Dan Noyes @dannoyes

@lisalucier @santosha @jakedduck1 @louissc as is so often the case with epilepsy, there’s a certain serendipity to the events in our lives. This morning I had two significant seizures, and as I was recovering, I reminded myself that I must be 'flexible' with my expectations and 'show myself grace' to live with this diagnosis. On the surface, these two concepts seem incredibly easy, but epilepsy means constantly dedicating and redirecting your life back to them. As I lay in bed recovering, I told myself that my day is not over. I just need to realign, just like I've done numerous times before. One day at a time.

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@dannoyes
Hi Dan!
Thank you for sharing this, especially on a day that had asked so much of you.
One of the most memorable insights I've recently heard came from Dr. James Jackson, a neuropsychologist invited to a recent episode of Seizing Life from Cure Epilepsy: that even when our symptoms don't change, we can change our relationship with them — treating epilepsy like an unwanted house guest that we learn to tolerate over time. And that's exactly what you showed us that day: being flexible with your expectations and showing yourself grace.
"My day is not over. I just need to realign." Those words are a beautiful example of changing our relationship with epilepsy rather than fighting against it.
Thank you for this contribution!
Chris

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