Epilepsy Talk

Epilepsy Triumphs | July 10, 2018

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.

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. 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.

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.

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.

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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  1. Well I have had epilepsy all my life and I am sixty two years old but I do not let it get me down I still do what I want and it does not bother me cause I have the lord on my side so I am protected and my meds work good and I am awake most of the time.

    Liked by 1 person

    Comment by michael Hartman — July 10, 2018 @ 3:14 PM

  2. I’m 57 and I just learned to scuba dive.

    Liked by 1 person

    Comment by Berenice — July 10, 2018 @ 5:16 PM

  3. Hooray for these people. I think common maturity solves all problems. When younger, I was never chosen for teams, given opportunities like others got, simply because people knew nothing about epilepsy.
    It took a lifetime (so it seemed) until at a certain age
    people were finally aware of circumstances. (and of course, there are still many people who were never
    educated about it) Duh. I’m now treated as it should
    always have been.

    Evan, I feel sorry for you. I did not undergo the surgery because of the low percentage of success.
    So sorry it only made things worse for you.

    Liked by 1 person

    Comment by Karen — July 10, 2018 @ 7:38 PM

  4. After long, bitter & tough struggle to deny, cover up & refuse to believe & accept my “new medical disorder”, I’ve come to learn, understand & admit that “this’s my cross & I will carry it”.
    Accepting the “new condition”, I felt relieved from a whole lot of stress, anger, & frustration.

    Liked by 1 person

    Comment by BahreNegash Eritrea — July 11, 2018 @ 7:07 AM

    • I think acceptance is the bravest trait of all.

      Coming to grips with a condition and actually living with it, that is a triumph.

      Especially in light of your positive and persistent manner.


      Comment by Phylis Feiner Johnson — July 11, 2018 @ 8:56 AM

  5. Thanks so much for sharing this. I lost my beloved career to Epilepsy(acute care Physical Therapist). I am trying to find my new “purpose” in life but it still is a challenge. I need little motivations like this to keep me going. Thanks and Peace to you

    Liked by 1 person

    Comment by Cindy Fiser — July 11, 2018 @ 9:24 AM

  6. I Totally agree with you. Even though my either Simple Partial Motor or Myoclonic seizures are getting stronger, the Brain is simply part of your body, and you are at the steering wheel of your body. Not Epilepsy. I’ve always had a knack for building things out of Lego pieces. Like a small Grand piano, Starships from Star Trek, and even a Lightsaber from Star Wars. I’ve always thought that if the Lego Company had a place where I live, I’d be running down the street, saying “HEY?! HAVE YOU GOT A JOB OPENING?” But with not being able to get around, because of the Epilepsy, I still don’t say it has won. I just keep in mind “For There To Be A Problem, There Has To Be A Solution”.

    Liked by 1 person

    Comment by David Jensen — July 11, 2018 @ 11:08 AM

  7. I have had epilepsy since I was 9 and for a while I had a rough time with it. I would say my teen years were my roughest times in my life, but now at the age of 43 I have come to accept it. God has walked side by side with me throughout this adventure and I know He will always be here for me. Here while I am on earth I am backed up by a very courageous and wonderful wife. I can’t say I have won over my epilepsy, but without her and my boys behind me I would not be where I am today.

    Liked by 1 person

    Comment by Jeff Lipe — July 11, 2018 @ 12:37 PM

    • You are what you are because of all you’ve lived through…plus your spirit…and the love of others.

      To have such support is a blessing and a triumph.


      Comment by Phylis Feiner Johnson — July 11, 2018 @ 2:31 PM

  8. A very motivational and thought provoking post Phylis.

    I may be wrong but having developed epilepsy after brain surgery for an abcess at the age of 29, i have always thought it must be more difficult for people who are born with epilepsy, or get it at very young age. I say this because those of us who get it later have had an opportunity to develop a career and acquire qualifications and a track record before needing to adjust our way of life to accommodate the problems that come with epilepsy and the side effects of the medication.

    When I Read the inspirational stories that you cite i wonder how they dealt with the problem of keeping a driving license. I was lucky in that my attacks were nocturnal and fairly infrequent. During my working days (in Asia and Africa) i kept very quiet about my condition because my work required me to drive on occasions and required frequent trips to third world countries such as Bangladesh, Indonesia and Somalia where medical facilities were not advanced.

    Also, I know it is a question of semantics, but I do not say “.,.i am epileptic” which would define me in terms of my medical condition. I prefer to say “…i have epilepsy.” Clearly, epilepsy doesn’t have me!

    Liked by 1 person

    Comment by Michael H — July 11, 2018 @ 3:23 PM

    • RE: Being born with epilepsy or developing it at an early age. I agree. You can’t miss what you’ve never had.

      But YOU, despite having your condition and knowing all it involves — yet nevertheless having the guts to go to third world countries without the prospect of proper medical attention — YOU have it beat.

      There’s no epilepsy beating you. You’re the one in charge. And I admire and salute you.


      Comment by Phylis Feiner Johnson — July 11, 2018 @ 4:36 PM

  9. Talking and sharing our feelings won’t get this condition out of our heads, just make us feel better.
    We need to find a way to make the world know what Epilepsy is!!
    Get those famous dudes w/seizures to fund awareness, commercials, billboards! Get some fricken banners out there that say Epilepsy Awarness instead of Cancer!


    Comment by Jordan — July 12, 2018 @ 4:30 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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