Epilepsy Talk

Other Voices…Other Lives | June 23, 2025

“There were times I asked myself,
‘Is life really worth living?’
Suicide, now there’s a thought,
But would God be forgiving?”

Ed L.

“We were locked up and used as a guinea pigs to try medications in the ‘testing stage.’ Believe me, they didn’t hesitate when it came to try untested medication.

There were times I was pumped so full of meds I couldn’t walk straight, and it usually just made my seizures worse…

If I had a seizure, they would give more med’s and lock me in the seclusion room.

Sometimes if I had a seizure in the seclusion room, a nurse or attendant would come in and slap me around, some used a belt on me.

I still have scares from that, even after 43 years.”

Mike F.

“I remember so much more before I went to college than after. At one time, I was thinking if I hadn’t gone to college maybe would my memory be better. (Yeah right.)

Later, I was lucky to be hired as a first-grade teacher in a year-round school with fantastic teachers and students.

It was a great experience and I actually felt like I was worth something. I was even able to use my experience to teach English as a Second Language.

It just seemed like this was my place to be.”

Lynda M.

“After my fourth child was born, I went into Status Epilepticus and then into a coma. Sometimes, I could hear what was being said, when I was in the coma. I heard my daughter screaming when she found out.

I remember the doctor telling my husband to prepare for my funeral. I got mad and tried to grab the rails on the sides of my hospital bed.

Meanwhile, the doctor was busy talking about his upcoming trip to Colorado, wondering if he should buy a plane or rent one!”

Ruth B.

“It’s been a great life so far, but I’m not done. I’m only 65.

I hope every kid with epilepsy will have a life that’s as fulfilling as mine. Even if they can’t stop the seizures.

Also, I hope that later in life they can adapt to a life with seizures or find a way to stop those seizures from happening.“

Rich S.

“No two people are exactly alike. All people with epilepsy are different and no two people have the same problems. We can all find ways to enjoy life in our own way.

I want to succeed professionally. I want to have relationships. But often opportunities slip away.

For years (and even sometimes I still) I blamed it on the epilepsy and brought myself down. The problem is me having the epilepsy and not the epilepsy having me.

I have to remind myself that if someone is truly a friend, they will accept me.

It is still difficult though, knowing when and how to tell someone, especially a date. I hope someday that whoever he is will not see my epilepsy as weakness, but rather see it as strength for everything I have overcome.”

Katrina K.

“There’s something liberating in being expected to fail. No expectations, no explanations. After all, ‘you’ll never amount to anything,’ you’re damaged goods.

So you’re free to fall on your face. Or reach for the stars. I did both.”

Phylis J.

“Being that my seizures started at such a young age, I accepted it as normal. I didn’t really remember life being any other way.

I always had to take pills at breakfast and when I went to bed. This helped me fight the emotional side of epilepsy. I do not question why. I continue, slower at some times, with the day to day life.

I have made a few ‘true friends’ over the years who help. Even if I am 1600 miles away from them, a phone call does wonders.”

T.A.E.

“Around me, others try to pull me back.
Their begging words implore. Please, please come back.
But I’ve already fallen, body slack, then stiff and thrashing.
I will not recall my stiff and wildly thrashing limbs.
Recall belongs to husband, children. Stormy squall
belongs to husband, children. Stormy squall
soon passes, not without an icy chill.
The memory, yes, passes, but the chill
holds frozen one more springtime daffodil.“

Maggie M.

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