Epilepsy Talk

Epilepsy Triumphs | May 30, 2016

You can either become a victim of epilepsy and let epilepsy take over your life. Or you can simply say, “I have epilepsy” and decide your own fate.

Twenty-four years ago, Mark was an active-duty U.S. Marine when he suffered from several seizures that resulted in a diagnosis of epilepsy. His Marine Corps career ended with a medical discharge. “My life was a tough road those days,” he says.

Today, he is a triathlete who has triumphed over epilepsy. And he has risen to the famous Ironman World Championships which consists of a 2.4-mile swim, followed by a 112-mile bike race, culminating in a 26.2-mile run.

Chanda Gunn is the U.S. women’s hockey team’s last line of defense. The starting goaltender, who was diagnosed with epilepsy at age 9, faces life the way she faces shooters on the ice: with no fear.

Gunn doesn’t consider herself a hero because she plays the most difficult position in a developing sport or for helping the U.S. women’s team win its first world championship. Despite her challenges, she has been able to establish herself as one of the most prolific hockey players in the nation.

At least three NFL football stars have publically discussed their seizures. Baltimore Ravens cornerback Samari Rolle indicated that he missed parts of the NFL season because of epilepsy. Jason Snelling was diagnosed with epilepsy at age 15, but still made it to the starting lineup for the Atlanta Falcons. Alan Faneca, the Pittsburgh Steelers Pro Bowl guard, has had epilepsy since his teens. He does extensive volunteer work for the Epilepsy Community.

John Olson, just an “ordinary guy”, is 24 years old and has been living with epilepsy since he was 4 years old. In June of 2012, he summited Mount St. Helens with his father Tom, as part of an effort to raise funding and awareness for epilepsy.  The climb, called “Stop the Eruption,” was a great success and was even covered on national TV.  Epilepsy has been a serious condition for most of his life, but the words, “I can’t” are not part of John’s vocabulary!

Pat was athletic, confident, and always willing to lend a hand. When he graduated, he enlisted in the Army. Pat was on a night mission in a Baghdad neighborhood and while getting supplies for his men, he was shot. 

Pat’s traumatic brain injury was grave, and at the field hospital, the medical staff had no choice but to remove half of his skull to allow his brain to swell. The result was post-traumatic epilepsy. With seizures to contend with, not to mention the drug haze, Pat has had to work extra hard to make gains.

Jessica Waters was diagnosed with epilepsy on her 11th birthday. Jessica didn’t let epilepsy hold her back. She took up dance classes and performs on the dance team at her middle school. Jessica was also crowned Miss Ohio Teen this year. She said, “I have epilepsy, but it doesn’t have me.”

Prince suffered from epilepsy as a child and felt that to make up for this, he should be that little bit noisier and get noticed! And he certainly succeeded. He wowed people consistently with his musical talent.

Rosie Gilmour, feared she would never achieve her dream of becoming a model after facing a daily battle with epilepsy since she was 9. Now this beautiful, spirited teenager who had 30 seizures a day has become a model — and a charity ambassador.

Rosie said she was determined not to let epilepsy take over her life. She added: “To be asked to be an ambassador for epilepsy is just fantastic…by sharing my experiences and listening to others, I hope I can help people all over. Everyone needs to open up and I hope by being an ambassador, people will open up to me.”

Author Leanne Chilton, explains: “I wrote Seizure Free: From Epilepsy to Brain Surgery, I Survived, and You Can, Too! because I felt like there was a need for it. I couldn’t find any books on brain surgery when I was finally given that option. I kept a good portion of my life hidden from my family and friends for a very long time. I’ve decided to publish my experiences to let others know that they are not alone.”

Hijacking survivor, inspirational speaker and author Jackie Pflug of has been inducted into the Speakers Hall of Fame by the Minnesota Chapter of the National Speakers Association.

Pflug survived a terrorist hijacking that resulted in a gunshot wound to the head, from which she developed epilepsy, and triumphed over a lengthy rehabilitation process. She drew on her background in special education to master her own learning disabilities. Her presentation, “The Courage to Succeed,” has been delivered throughout North America, and her book, “Miles to Go Before I Sleep”, continues to influence people’s attitudes, values, and behaviors.

When Evan was four years old, he underwent brain surgery for tuberous sclerosis complex, a condition that caused him to have 300 to 400 short seizures each month. Since the surgery, though, Evan has been experiencing much longer and more serious seizures that require medications and even emergency medical response.

Evan used his natural talent for writing and illustration, to raise the $13,000 to get a seizure dog for himself through the sales of his book “My Seizure Dog”. Even more incredible, sales generated enough money to support others in their having a seizure dog.

He has been nominated by People Magazine for their “Reader’s Choice Hero” award, and he was chosen as one of Huffington Post’sMost Influential Children of 2011″.

This is just a smattering of people from all walks of life, all over the world, who have had the courage, grit and determination to take charge of their epilepsy and not forfeit their dreams. They have triumphed against all odds.

Perhaps you are one of them.

“Life is an amazing gift to those who have overcome great obstacles, and attitude is everything! ” — Sasha Azevedo, American actress, athlete and model who overcame epilepsy.

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  1. I aiways said I have epilepsy, but epilepsy don,t have me. To bad that everyone who has epilepsy, don,t see it that way.


    Comment by michele metzger — May 30, 2016 @ 11:48 PM

  2. A great attitude!


    Comment by Phylis Feiner Johnson — May 31, 2016 @ 9:26 AM

  3. Hey Phylis,

    For me it’s an excuse not to do certain things that may provoke my seizures. Although if there is something i need to do, it won’t stop me from doing it.

    Now my seizure happen like once every 2 months, so around the time one should happen, I’ll take it easy and do the least minimum not to provoke it. Maybe that is why it’s easy for me to say this, since i don’t have seizures daily, i guess if I had them daily, it would definitely effect my life a lot more.

    So i guess it’s probably proportional to the amount of seizures one has compared to the amount of time between seizures, that it would control ones life.


    Comment by Zolt — May 31, 2016 @ 2:28 PM

  4. But your music, Zolt. Don’t you consider that a triumph?


    Comment by Phylis Feiner Johnson — May 31, 2016 @ 3:20 PM

  5. I think my piano playing is just a way to try and not provoke a seizure. It’s definitely relaxing, and soothing, and takes a lot of stress off ones mind. Oh, i have recorded another song, if you would like to hear it, it’s at the following address. If the address doesn’t show up, just search for k tloz on youtube.


    I may need to delete it and upload a new one, since the recording wasn’t the best.


    Comment by Zolt — May 31, 2016 @ 7:12 PM

  6. Oh Zolt, you may put yourself down, and I’m sure it’s a good way of destressing, but your music is BEAUTIFUL. (And relaxing!)


    Comment by Phylis Feiner Johnson — June 1, 2016 @ 7:59 AM

  7. Love this post! This is what we need more of. We all have a choice of how we perceive our epilepsy and these wonderful accounts just prove how much can be done if you allow it to be a companion, (even if it’s a frustrating one at times) rather than letting it dominate. I suffer from seizures everyday but this is immensely inspiring and keeps me going. Super post Phylis, thank you!


    Comment by Freya Symes — June 4, 2016 @ 4:01 AM

  8. Freya, everyone has something good inside of them, whether it’s creativity, talent or a penchant for something.

    One just has to nurture it and “let it out.” Some do and some let it drown. (Often through no fault of their own.)

    But wouldn’t it be fabulous if we could focus on whatever there is that makes us a winner!


    Comment by Phylis Feiner Johnson — June 4, 2016 @ 9:19 AM

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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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