Epilepsy Talk

Epilepsy Triumphs | September 1, 2019

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. What a great article! A must read for anyone suffering from epilepsy especially newly diagnosed ones. We can accomplish great things!

    Liked by 1 person

    Comment by Ana Fernandez — September 1, 2019 @ 11:39 AM

  2. That is unless you have a father like mine was who would not even let me out of the house by myself. Much less cut the apron strings and let me live my own life.

    Liked by 1 person

    Comment by Jeanine Bunt — September 1, 2019 @ 12:12 PM

  3. I’m right there with you.

    My parents treated me like a pariah. I was “damaged goods”.

    I was awarded first place in a writing competition. And I had to read my essay in front of the governor! Everyone was stunned.

    Then I graduated from college Magna Cum Laude. They couldn’t believe it. (And did not attend my graduation.)

    I got the job of my dreams. Promotions came easily. My parents didn’t know what to say.

    I became a successful writer and ultimately started my own freelance business which I did for over 35+ years. (Until I started Epilepsy Talk). They still couldn’t believe it.

    I met the man of my dreams. My father almost had a stroke. “There must be something wrong with him. Why would he choose a girl like you.”

    I’ve been married for almost 40 years. And I’ve had a very full, successful and happy life.

    Damaged or not.


    Comment by Phylis Feiner Johnson — September 1, 2019 @ 12:31 PM

  4. Fantastic article,,, Thanks God there’re invincible pioneers & inspiring heroes out there, charting their own destiny refusing to give up & succumb to adversity, leading & empowering the whole world to follow their footsteps.
    With all the hardships living with & around Epilepsy, it’s heartwarming to find out that Epilepsy does not control the professional & personal achievements of those who are determined to beat the odds.
    Thank you for sharing the successful stories of these gallant heroes.

    Liked by 1 person

    Comment by BahreNegash Eritrea — September 1, 2019 @ 1:13 PM

  5. They’re awesome, aren’t they?

    That’s why I felt compelled to write this article.

    Surpassing the odds and the adversity of epilepsy, they are real heroes in my book.


    Comment by Phylis Feiner Johnson — September 1, 2019 @ 1:39 PM

    • And so are you, Philis.
      Carrying your own heavy cross, you’ve come a long way charting your own destiny against formidable odds, inspiring & encouraging many of us to learn more on how to cope with seizures, sharing valuable information on this forum.
      You’re a hero in my books for I’ve learned a lot from you on how to survive with Epilepsy.
      You’re doing a lot of good, more than you will overcome to know.
      Thank you!

      Liked by 1 person

      Comment by BahreNegash Eritrea — September 1, 2019 @ 2:24 PM

  6. Could we start a mutual admiration society? You can be president! 🙂


    Comment by Phylis Feiner Johnson — September 1, 2019 @ 2:29 PM

    • Phylis, Thank you for your compliments & nomination. It’s pleasing to know I’m still functioning good, after all.

      Liked by 1 person

      Comment by BahreNegash Eritrea — September 1, 2019 @ 6:03 PM

      • You “function” just wonderfully. That’s one of the reasons I admire you so much!


        Comment by Phylis Feiner Johnson — September 1, 2019 @ 6:21 PM

  7. Phyllis I have had epilepsy for 54 years I am definitely not Victim anymore.

    Liked by 1 person

    Comment by Michele Lipenta — September 1, 2019 @ 4:37 PM

  8. Excellent. When and what made you change?


    Comment by Phylis Feiner Johnson — September 1, 2019 @ 6:19 PM

  9. Again, another one of your wonderful posts! I so appreciate you sharing your gift of writing. P.S. I was reading a book on world religions, in particular about the Muslim faith, and noted Muhammed had epilepsy!

    Liked by 1 person

    Comment by Kristi — September 1, 2019 @ 11:10 PM

  10. Thanks for writing this, Phylis! There are so many heroes like us out there every day. Role models who no longer stand in the shadows, but who stand out for their achievements. And you are one of them. Thanks for sharing for Labor Day.

    Liked by 1 person

    Comment by megambon2164 — September 2, 2019 @ 4:56 PM

  11. Remember our Penn Station platform rescue? I thought that poor old bag lady was done for. 😦

    Liked by 1 person

    Comment by Phylis Feiner Johnson — September 2, 2019 @ 4:58 PM

    • Oh yes! I will never forget that as long as I live! We were brought there for a reason. And the sad thing is that we were the only two people who knew what to do. You are my hero!

      Liked by 1 person

      Comment by megambon2164 — September 2, 2019 @ 5:00 PM

      • Ditto girlfriend. 🙂

        Otherwise, there would have been one more SILENT epilepsy fatality.


        Comment by Phylis Feiner Johnson — September 2, 2019 @ 5:09 PM

  12. I took my 16 year old son off his fycompa which he took twice a day. And kept him out of the stressful environment of special needs schooling. A miracle he has had 1 seizure all summer. Where as before he was having 3 and 4 a week. Every day he takes a two to three hour nap. Which he didn’t do in school. It was a game changer for him and us. It’s just really unbelievable

    Liked by 1 person

    Comment by Thomas Langella — September 4, 2019 @ 1:19 PM

    • Congratulations for your successful decision, saving your son & your family from a whole lot of hardships, cutting the frequency of seizures your son had to overcome & your family had to go through.
      It’s good to see your determined decision has proved more effective than the medications.
      Best Wishes

      Liked by 1 person

      Comment by BahreNegash Eritrea — September 5, 2019 @ 1:31 AM

      • Gerrie, you know all about determination. You are the very embodiment of it.

        And yes, the fact that it can overcome medicines, is a triumph in itself.


        Comment by Phylis Feiner Johnson — September 5, 2019 @ 10:11 AM

    • Thomas, it takes a wonderful parent to be so attentive to the nuances of their children’s needs.

      You know your child best and that was so aptly proven.

      I’m sure you’re ALL much happier.


      Comment by Phylis Feiner Johnson — September 5, 2019 @ 10:09 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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