Epilepsy Talk

Epilepsy Triumphs | September 28, 2021

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.

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.

At least three NFL football stars have publicly 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. Helena 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.

The result was post-traumatic epilepsy.

His 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.

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.

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! 

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.”

Jackie Pflug, hijacking survivor, inspirational speaker and author 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’s “Most 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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13 Comments »

  1. Hi Phylis,

    You picked the right day to post this. Yesterday was my fifth anniversary of being seizure free.

    I have come a long way from 26 years ago, when I was in a coma clinging to life after going into status epilepticus.

    Now I am an editor for an online news agency and a community journalist.

    And I am happy 😊!

    Liked by 1 person

    Comment by Mary Ellen Gambon — September 28, 2021 @ 11:04 AM

    • Congratulations! I hope it’s the start of many more seizure-free years!

      Liked by 1 person

      Comment by Ed Lugge — September 28, 2021 @ 3:09 PM

  2. Reblogged this on Ken's Devotions.

    Like

    Comment by Kenneth — September 28, 2021 @ 11:15 AM

  3. YOU ROCK MARY ELLEN!

    The very soul of grit and determination. And an inspiration to us all.

    Liked by 1 person

    Comment by Phylis Feiner Johnson — September 28, 2021 @ 11:17 AM

    • As always, thanks for being a dear friend and mentor. I just keep on keeping on!

      Liked by 1 person

      Comment by Mary Ellen Gambon — September 28, 2021 @ 2:37 PM

  4. An interesting subject Phylis. If you go on line you can find lists of famous actors, artists, composers, painters, politicians, scientists, singers etc., who were epileptic. However, you dont need to be famous in order to have triumphed in life despite epilepsy and the limiting side effects of anti epileptic drugs. I believe that from a philosophical perspective we are only in competiion with “our best possible self”. So, I am not famous, I haven’t published any symphonies or books, and although I love cycling I don’t hold any world records. However, my epilepsy has never defined me or triumphed over me despite the fact that on occasions the side effects of dilantin have made life frustratingly difficult! And I think most of us in this community can make similar claims.

    Liked by 1 person

    Comment by Michael H — September 28, 2021 @ 2:11 PM

  5. It’s the only frustrating part of my story. If I was famous, a lot more people with epilepsy would see how some risks are worth taking and they’d be right behind me, like Mary Ellen, on their way to decades of a better life.

    Liked by 1 person

    Comment by Ed Lugge — September 28, 2021 @ 3:19 PM

  6. It’s inspiring to know that if there’s a will, there’s a way to overcome the hardships of Epilepsy.
    Having tried but failed to deny & cover up my seizures from my family, friends, coworkers & employers for many years to only end up having countless seizures infront of the very people I have been trying to cover up my seizures from, I learned the hard way to accept & face the struggle on how to cope with Epilepsy.
    If I only knew that, there are magnificent everyday heroes out there who overcame formidable odds to shine & glow all over the world, defeating the tormenting experience of living with epilepsy, I could have sought immidate medical attention to deal with my seizures, avoiding the time consuming humiliation I had gone through.
    Therefore, thank you for sharing these inspiring stories, for many us to learn that Epilepsy is NOT the end of the world.
    Gerrie

    Liked by 1 person

    Comment by Gerrie — September 29, 2021 @ 2:33 PM

    • You are MY hero Gerrie. For all you’ve done and overcome. For your steadfastness in the horrible face of adversity (that hopefully the rest of us will never know). Your courage and perseverance.

      I could go on…

      Like

      Comment by Phylis Feiner Johnson — September 30, 2021 @ 8:28 AM

      • Phylis, Thank you for your kind words & encouragement, I have made it this far with learning from courageous people like you, who took me in under their wings to guide me through the tough times.
        Therefore, I’m totally grateful to all members of this remarkable site, who openly shared their experiences with all of those of us who were total strangers to Epilepsy.
        KEEP UP THE GREAT WORK! 👍!
        Gerrie

        Liked by 1 person

        Comment by Gerrie — September 30, 2021 @ 6:36 PM

  7. Hi there

    I’m wondering if there is any up to date research in how teenagers with epilepsy have responded to the covid vaccination? And or have those with epilepsy had covid and had minimal seizures?

    I’m a mum to a 17 year old with until this year poorly controlled generalised tonic clonic seizures and am trying to find out as much as possible before I decide to vaccinate or not.

    Kind regards

    Jules

    Liked by 1 person

    Comment by Jules Lough — October 1, 2021 @ 10:44 PM


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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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