Epilepsy Talk

Epilepsy Triumphs | December 24, 2015

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. 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. 

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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Resources:

http://plrplr.com/61483/triathlete-triumphs-over-epilepsy/

http://www.prettytough.com/tag/chandra-gunn/

http://my.epilepsy.com/Epilepsy/newsletter/Jan10_people

http://www.dlpannone.net/seizetheworld/index.php?option=com_content&view=article&id=112:faith-in-me&catid=31:share-your-story

http://www.cureepilepsy.org/aboutCURE/psas/pats_story.asp

http://diffugerenives.hubpages.com/hub/Some-famous-epileptics-to-help-inspire-with-pictures

http://www.epilepsyfoundation.org/resources/epilepsyusa/upload/USA-2011-Issue3-Optimized.pdf

http://artofmakingadifference.com/evan-mossa-7-year-old-author-with-epilepsy/

http://www.dailyrecord.co.uk/news/real-life/stunning-teenager-overcame-epilepsy-to-become-1059171


30 Comments »

  1. These people are all exceptional! But, let us not forget the parents, spouses, patients, employees, clients, children and members of society with E. Getting through life on a daily basis is a triumph!

    Like

    Comment by Susan — December 24, 2015 @ 8:16 PM

  2. These are amazing people! There are no words to describe these people and the people around them for supporting them

    Like

    Comment by suresh — December 25, 2015 @ 12:01 AM

    • I think behind every triumphant individual, there is nurturing and within every “hero” there is amazing courage and persistence.

      Like

      Comment by Phylis Feiner Johnson — December 25, 2015 @ 5:58 PM

  3. Who else is has acted not cried but lived to the fullest. Not for fame, personal financial game but everyday life of the average one so there is no fame/shame. Just on of the gang in achievements, a team. Do women act or cry and speak out? Who represents who? Educational and employment differences are discusses historically by who?

    Like

    Comment by Cynthia Novak — December 25, 2015 @ 11:14 AM

  4. Cynthia, I think what you’re saying is that we’re all heroes in our own right, striding and fighting to see another day.

    There is no glory in it, just the accomplishment of achievement.

    Like

    Comment by Phylis Feiner Johnson — December 25, 2015 @ 6:05 PM

  5. Those comments and stories are so nice to see .As a child I started getting grand mal seizures around 5 or6 years old.Any one with grand mal knows how uncomfortable having one is .Basicaly I spend my whole childhood in the background. Never got involved in sports or anything at school.Because of my problem never got to have any real friends.After high school started to realize what happens ,happens.Got married have a house three children five grandkids and a wonderful wife who understands.I’m 61 now and wish all this info was around then.I lost my whole childhood back then soworried id have another seizure in front of everyone.

    Like

    Comment by Robert Therrien — December 25, 2015 @ 10:51 PM

  6. But despite the odds Robert, look at what a wonderful adult you’ve grown up to be!

    Like

    Comment by Phylis Feiner Johnson — December 26, 2015 @ 9:26 AM

  7. This is a wonderful post! I, too have decided to live with the mantra that I have epilepsy but it doesn’t have me! I just need to think of some work arounds sometimes 🙂

    Like

    Comment by sitagaia — December 26, 2015 @ 10:39 PM

  8. Talk the talk AND walk the walk. You go boy!!!

    Like

    Comment by Phylis Feiner Johnson — December 27, 2015 @ 11:40 AM

  9. Hello my name is Mary. I woke up with a headache and feeling surreal. I saw swirling purple and lime green in my field of vision. Than the usual lime green fading in and out …tonic and clonic seizure. The seizure lasted 1 hour. My daughter is so good at caring for me during seizures. My own mother had seizures and three of my own children also have had them during their lives. I use to hold my mothers head as she lied on the floor to stop her head from bang on it. I first started doing this as a small child. Question: can the effects of seizures in a parent filter down to their off springs to some degree…?

    Like

    Comment by mary — December 28, 2015 @ 1:52 PM

  10. Yes, the effects can filter down, but not always.

    Congratulations on being such a successful caregiver!

    I know that must be so difficult for you. Physically and emotionally.

    Like

    Comment by Phylis Feiner Johnson — December 28, 2015 @ 3:07 PM

  11. I totally empathize with mary. My kids have always been wonderful during my seizures yet I know they also wonder, is it going to happen to me some day? It was a difficult decision choosing to have children. Which gets me to another thought. As someone who was a former clinical social worker, I have been constantly astounded by the ignorance and dismissal by Neurologists and other specialists of the psychological effects of epilepsy and the various medications on patients lives.

    Like

    Comment by Susan — December 28, 2015 @ 8:36 PM

  12. Susan from your vantage point as a former clinical social worker, you know the pain and fear (and disappointment) first hand.

    Where are answers to doctors’ ignorance and dismissal? I fear it’s us — fending together for ourselves — as advocates and teachers. 😦

    Like

    Comment by Phylis Feiner Johnson — December 29, 2015 @ 9:50 AM

  13. Don’t get me wrong Phylis, I’m all in favor of self and group advocacy. However, I’m tired of Neurologists and other specialists being let off the hook. I firmly believe that part of an epilepsy patients treatment plan should be a referral to a counselor (not just an EFA brochure), to help deal with the stress and potential trauma associated with having epilepsy and being on mind-numbing medications. It happens with cancer patients as well as those with Alzheimer’s and those going through drug and alcohol rehab. So, why not epilepsy? You mean our quality of life hasn’t been affected? lol!

    Like

    Comment by Susan — December 29, 2015 @ 8:07 PM

  14. It’s incredible what the mind can do once it’s fully unleashed.

    But to do that one needs the passion, the want and the will and desire to see it through. Normally it’s as easy as just starting something and sticking to it.

    Like

    Comment by zolt — December 30, 2015 @ 12:22 AM

    • Hi Zolt. I think you hit the nail on the head.

      PASSION.

      Sometimes it can triumph against all the odds.

      Like you and your talents.

      Like

      Comment by Phylis Feiner Johnson — December 30, 2015 @ 10:04 AM

  15. Oh Susan, what a dream that would be.

    To actually be treated as a valid patient, with time, care, explanations and (be still my beating heart), counseling, too.

    Maybe in a perfect world. Which this isn’t.

    But for now, one can at least wish for some support from the neuros. Culpability. And more than 20 minutes.

    Like

    Comment by Phylis Feiner Johnson — December 30, 2015 @ 10:01 AM

  16. Hey, here’s my triumph. I’m actually feeling optimistic about 2016, even though I had a seizure last night! It’s taken a lot of work to get to this point, which is why I think that counseling should be part of the treatment plan for all epilepsy patients.

    Like

    Comment by Susan — January 1, 2016 @ 3:19 PM

  17. Glad you’re optimistic…and yes, we’re on the same page.

    A definite triumph! 🙂

    Like

    Comment by Phylis Feiner Johnson — January 1, 2016 @ 4:38 PM

  18. Hi my name is Debi Harmon Ference I wrote a book it’s called Amazing Debi my secret before and after brain surgery foe epilepsy .My surgery was was Dec 29 -1995 Ive been seizure free 19 years.I started having seizures at 18 months old.I went into a coma fir several days I wasn’t suppose to live .Ive had seizures several years several types Please check out my website wwwamazingdebi.com I was on Tge Leading Edge with Jerry Anderson .I also have a page Amazing Debi

    Like

    Comment by Deborah K Ference — January 1, 2016 @ 5:16 PM

  19. Thank you Phylis! I’ll try to use my epilepsy & RA to encourage others to never give up. You too can overcome.

    Like

    Comment by Melissa Bryan — January 8, 2016 @ 9:48 AM

  20. You are living proof of that!

    Like

    Comment by Phylis Feiner Johnson — January 8, 2016 @ 10:01 AM

  21. Phyllis it is so great to see how many people that I have touched, Im so glad I wrote my secret.

    Like

    Comment by debi harmon ference — January 17, 2016 @ 9:50 PM

  22. Again. Congratulations.

    Like

    Comment by Phylis Feiner Johnson — January 18, 2016 @ 9:06 AM

  23. I fought epilepsy since I was 18 months old! Ive had several types but refused to give up ! I had Epilepsy it never had ME ! Today I have been over 19 years seizure free! I console people global ! Ive wrote a book that is now on Monroe Country Librarys ! And is going in Toledo Ohio Librarys . I was told I wouldn’t make money if it was in the library .I said I wanted people to be educated ! 1-26 people have Epilepsy. More people die of Epilepsy a year than Breast Cancer yet there is very little funding! I’m doing everything possible to chsnge that ! Please check out my website wwwamazingdebi.com

    Like

    Comment by Debi Ference — February 8, 2016 @ 11:24 PM

  24. Yes you are right we do not have to be a victim to Epilepsy. I had such an unsupportive family that was totaly shallow on this subject and a couple of nurses a cousin and a aunt that would just stand there and did not do one thing when I had to listen to everybodies BS on the subject.

    Like

    Comment by Jill Whiting — February 17, 2017 @ 6:36 PM

  25. I know how you feel, Jill.

    My parents treated me like a pariah and said I’d never amount to anything.

    “Damaged Goods”

    https://epilepsytalk.com/2016/07/03/damaged-goods/

    Like

    Comment by Phylis Feiner Johnson — February 17, 2017 @ 6:42 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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