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

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

Jake | @jakedduck1 | 4 hours ago

In reply to @santosha "Hi everyone, Sharing another reflection that's been on my mind lately... Last month, Andre Agassi was..." + (show)

@santosha

Hi everyone,
Sharing another reflection that's been on my mind lately...
Last month, Andre Agassi was here in São Paulo city for a big event, sharing his journey in a talk called "Reinventing Oneself to Succeed."
Recently, I had the chance to watch his online talk, bringing me so many thoughts related to epilepsy.
One sentence in particular touched me deeply: "Just because I can't choose my life, it doesn't mean I can't take ownership of it. It doesn't mean I can't choose to choose it."
Let me give you a bit of background so you can better understand why he said that. Tennis was never really Agassi's own choice — it was his father's. Because of that, his identity became tied entirely to winning or losing, and the only way to keep peace was to win. So when he finally became number one in the world, he felt he'd reached an end point — he had succeeded without ever feeling fulfilled. That eventually led him to step back from tennis for a while.
During the time he stepped back, he saw a news story about two men educating children in poverty-stricken areas, kids whose only real options seemed to be crime, drugs, or gangs. Something in it struck him, and he ended up building his own school for children like them. He returned to tennis after that — not because he had to, but for them, finally finding real ownership and fulfillment in something he valued.
I'm sure none of us chose epilepsy. But that doesn't mean we can't still choose our lives, and how we continue living them, with some sense of peace and happiness.
For me, epilepsy opened the door to a different kind of life. Though I had to step back from the professional work I loved — coaching people through career transitions and professional challenges — my epilepsy diagnosis quietly led me somewhere new. Supporting others living with epilepsy has given me a renewed sense of purpose. My choice also meant making room for things I had little time for before, like retaking one of my favorite sports (tennis) and giving myself more space to listen to my body and mind, and reconnect with my inner self. Looking back, I realize that some choices I made before my epilepsy diagnosis were driven more by external pressure than by genuine choice.
And you, how have you chosen to find moments of happiness and fulfillment in your own life, even though epilepsy wasn't something you chose?
Chris

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@santosha
Thank you for sharing that.
My memory is bad so I don't remember those days very well. But after a couple years of 😡anger😡and my seizures becoming more frequent and more severe I decided I wouldn't allow epilepsy to control my life. So I started to ride my bike and swim again. But I think what helped me most was volunteering. I did billing at a hospital, payroll at the YMCA, Physical therapy billing, homeless shelter misc work, but most rewarding was my job at the Police Dept. I think it was being needed and appreciated and the camaraderie. My dearest friend I met at the police dept and we have been the best of friends for nearly 50 years. I read many people who have epilepsy are lonely and depressed. They say they have no friends and I write them and I ask them. What effort do you put into finding a friend? I believe a person only gets out of a friendship what they're willing to put into it.
I suppose it was easier for me because my jobs were back in the pre-computer days when people actually talk to one another when people could actually see and feel emotions between one another, I think that's important.
As I've said many many times on this forum as far as I'm concerned, I think the most important thing is to accept your condition and not to allow it to control your life. So many people are worried when the next seizure is going to strike. Nobody knows when the next one will strike or even if it will strike or if you willl even make it to the next day. Social rejection, stigma, discrimination, anxiety, and depression. Anxiety, worry & depression are the most unnecessary of all. They only do more harm.
Jake