Epilepsy Talk

Epilepsy Triumphs | July 5, 2020

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 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.

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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21 Comments »

  1. We all have our own way(s) of triumphing over epilepsy. After my temporal lobectomy, my first was to top the four years of high school where I went seizure-free so I set a goal of going five years seizure-free and writing poems along the way to remember how it went. November 5, 2005 I reached that goal. I’m fast approaching 20 years without a seizure and plan to celebrate big-time.

    Two years after my surgery I wanted to get caught up on the time I couldn’t drive so being a baseball lover, I drove to Chicago, Philadelphia, Baltimore, DC, Pittsburgh and Milwaukee on the same trip to visit the stadiums…even though my sons wanted their mom to go along to keep an eye on dad.

    You recently talked about getting overheated which led to my third goal. I was 52 when I decided I wanted to make up for lost time and started a 10-yr involvement in physical events. I ran at least 20 5K’s, joined my sons as part of a marathon relay team for three years and finished second one year in the 55+ age group of a triathlon sponsored by our local Epilepsy Foundation.

    I received a true second chance at life and I want to make the most of it.

    Liked by 2 people

    Comment by Ed Lugge — July 5, 2020 @ 11:47 AM

    • Wow. What a trio (or more) of accomplishments! You’ve achieved so much it’s staggering. Here’s to you and your stunning triumphs, Ed.

      Liked by 1 person

      Comment by Phylis Feiner Johnson — July 5, 2020 @ 11:51 AM

      • Thank you, Phylis. I have a saying for my achievements: “Before you think higher, talk about it and inspire.”

        Liked by 1 person

        Comment by Ed Lugge — July 5, 2020 @ 1:47 PM

      • BRILLIANT!

        Like

        Comment by Phylis Feiner Johnson — July 5, 2020 @ 1:56 PM

  2. GOOD FOR YOU ED!!!!!!! Lol I used to use “EPILEPSY” and o suppose I STILL DO NOW as a REASON TO NEVER EVER SAY “I CAN’T” (which IS NOT ALLOWED IN MY HOME!!). I taught it when I coached and referred various sports and of course with my brothers during “COUNTRY LIFE”!!!!! With a little bit of adjustment I still DO MY BEST TO ADHER TO MY WORD AND WALK MY TALK!!!!!!! Although I must say apparently IT SCARES THE CRAP OUT OF MY HUSBAND, CHILDREN AND BEST FRIENDS!!!!!!! My take is “DON’T EVER SAY I CAN’T AND JUST DO!! EVEN WHEN THE WORLD TRIES TO STOP YOU THERE IS ALWAYS A WAY TO SUCCEED PHYSICALLY AND MENTALLY!!!!!!!”. THANK YOU PHYLIS AND PLEASE BE WELL AND SAFE MY FRIEND!! And have a VERY MEMORABLE DAY TODAY 😊🙏🏼🦅😇❤️😘

    Liked by 1 person

    Comment by Kathy S.B — July 5, 2020 @ 1:40 PM

    • Thank you, Kathy. Sounds like we think alike in a lot of ways.

      Liked by 2 people

      Comment by Ed Lugge — July 5, 2020 @ 1:52 PM

      • Both of you, Kathy and Ed, are the epitome of a “can-do” attitude. I’m proud to know you and celebrate your success.

        Like

        Comment by Phylis Feiner Johnson — July 5, 2020 @ 1:59 PM

      • Your welcome Ed 😊. Yes it sure does!! 😉. Please have a very good safe blessed day today and please take care of yourself 😊

        Liked by 1 person

        Comment by Kathy S.B — July 5, 2020 @ 2:43 PM

  3. I have found your post so helpful on so many levels! Thank you!

    Liked by 1 person

    Comment by Nancy — July 5, 2020 @ 2:13 PM

  4. It’s simple & easy, to conquer & triumph and say I WON !! when even a seizure or seizure activity does not enter into your brain chemistry before you feel like hell again. Personally I never think of my seizure condition except maybe 3 x’s a day when I do eat basically the same foods 365 days a year, that I know are SAFE for me to eat. Just 1 mistake with ANY food choice, will increase my seizure chances by 95% or MORE, & I do not want that. To even see foods that I would just love to eat knowing HOW MUCH I LIKE THEM,, I know what the result will be if I would eat those desired food or foods. I stay away from more than 95% of all drinks as well for the same reasons. To have ANY SOCIAL LIFE is all but impossible to do or have, when more than 90% of all social gatherings HAVE FOOD & DRINKS there, & I never stay around for any church meals when they are having them. Do I like people ? some may ask,, YES I DO,, but to be in any group & people come to you saying WHAT AREN’T YOU EATING ANYTHING ? and you either tell them, or just say,, my stomach isn’t feeling too well, & then that keeps others away from you as well as they do not want what you have, when you know you lied to that person to keep them from knowing the truth. All to say too that not ALL FRUITS & VEGETABLES ARE EQUAL. When fruits & vegetables are in a netted bag or plastic container wrapped up good, then THEY ARE TREATED & SPRAYED with toxic chemicals that WILL EFFECT ALL BRAIN CHEMISTRY. APPLES NOW are not wise to buy them today,, compared to what you will get later in late SEPT, OCT & NOV. There are 4 apple trees here that NEVER gets sprayed. I eat those apples as much as I can, and what is in the stores will stay there, just as will BANANAS which now get soft when the PEELS ARE STILL GREEN. They are called in my world TOXIC BANANAS because no GREEN PEEL BANANA should ever be SOFT INSIDE. The ARTTIC APPLE they call it will never turn BROWN after the apple is cut & the slices never turn brown after 5 minutes of air that the apple. All that said, it is not so simple to conquer & triumph to claim victory over seizures when there is so much that effects the seizures from happening UNLESS you are staying 1 step ahead of them. Don’t matter what your plans are, forget what will make seizures happen, you will be reminded quickly & others then will reject you, before you know you had a seizure

    Like

    Comment by James D — July 5, 2020 @ 2:49 PM

  5. Salute to the courageous inspiring heroes who refused to be stopped by Epilepsy achieving their lifetime dreams against formidable odds, it’s reassuring to know that if there’s a will, there’s a way to conquer the odds to shine & glow above adversity, like a lightening rod for the whole world to see.
    It’s pleasing to know that there are heroes who have been in your shoes & managed to conquer their medical hardships & lifetime dreams, believing in their own willpower to determine their destiny.
    Thank you for sharing the admirable stories of brave people who beat the odds.
    Gerrie

    Liked by 1 person

    Comment by BahreNegash Eritrea — July 8, 2020 @ 2:50 PM

  6. And Gerrie, you of all people should know about courage and perseverance!

    Like

    Comment by Phylis Feiner Johnson — July 8, 2020 @ 3:30 PM

  7. Today is the first day of my 20-year celebrations even though some may question why I celebrate this part.

    July 8, 2000 I have a seizure just three blocks from home as I’m driving and when I come to, I’m looking at the engine of my car just three inches from my leg. Some kids said they saw my car fly six feet in the air and land on the front end. I screwed up when the paramedics came because I told them “No” when they asked if I wanted to be taken to the hospital. After all, you know how senseless we can get right after a seizure. Fortunately, my son and wife were there soon after and I rode face down in the back seat to the hospital.

    The damages were a cracked toe and spine vertebra L3 out of place. It could have been a lot worse so that’s why I see the bright side of this as well as how it led to my surgery.

    Liked by 1 person

    Comment by Ed Lugge — July 8, 2020 @ 5:37 PM

    • Well, I clearly see your point. Celebrating the fact that you’re alive comes first, before you can have surgery.

      No, seriously. It’s a miracle that you survived and relatively intact, also.

      So, here’s to your life. AND your successful surgery. You seem to have the angels on your side! That’s also something to celebrate.

      Like

      Comment by Phylis Feiner Johnson — July 8, 2020 @ 6:25 PM

      • Thank you. I had a full pack of angels watching me: mother, father, brother and sister. They’re not ready for me yet.

        Liked by 1 person

        Comment by Ed Lugge — July 9, 2020 @ 8:56 AM

  8. Phills,
    Actually, I learned how to accept & cope with Epilepsy from you & all members of this support group, I managed to survive with my seizures for nearly two decades.
    Thanks to ALL members of this informative blog sharing their deep knowledge & experience about epilepsy & seizures in your informative website, I’m grateful that I made it this far when the whole world collapsed over me, knocking me out to the ground day & night with unexpected & unpredictable seizures.
    Therefore I appreciate your commitment to serve the victims of epilepsy, devoting your precious time, resources & know how.
    Gerrie

    Liked by 1 person

    Comment by BahreNegash Eritrea — July 9, 2020 @ 11:59 AM

    • Gerrie, I think you are a survivor from way back. You had to be one. Going through the many horrible ordeals that you did before Epilepsy Talk showed up.

      But if we helped you and can continue to help you cope, I am very grateful.

      Bless you always.

      Like

      Comment by Phylis Feiner Johnson — July 9, 2020 @ 12:45 PM

    • Susan,
      Thank you for sharing the admirable story of a selfless hero in the times of inhumane brutality, social upheaval & lawless crises.
      Total respect for the gallant hero who paid steep price to make this world a better place to live, far more beyond the call of duty.
      May his victorious professional long career & hard won honorable retirement inspire many more heroes to follow his footsteps.
      Gerrie

      Liked by 1 person

      Comment by BahreNegash Eritrea — July 11, 2020 @ 3:13 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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