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Epilepsy, Cirque du Soleil, & Advice for Young Athletes

(Originally a comment for the Blog linked below, I decided this advice may be helpful to others as well)

http://talkaboutitorg.ning.com/profiles/blogs/seizures-the-olympics...

 

As a former USA Competitive Gymnast, I know how hard it can be to give up something you love. I was trained at a USAG Olympic Training Center and surpassed the Elite level (10+). I shared the gym with the likes of Trent Dimas (who would later go on to win Olympic Gold), and was humbled to be coached by the same man (who in 1998 was inducted into the USAG Coaching Hall of Fame). Ironically, my natural talents and aptitude for excelling in Gymnastics were ultimately my downfall as well. I had risen through all the available levels, and soon it became time to "fish or cut bait" as they say. My parents always supported me 110%, but after a candid conversation with my coach about 'what comes next?', they were faced with the extremely difficult decision to either (1) pursue Olympic dreams, or (2) be done with it. I commend my coach for not only believing in my abilities, but also believing that my parents had a right to know exactly what 'option 1' would entail (my Mom was told she would have to quit her job to travel full time around the country with me, I was going to have to go live in another state for a year to train at another facility, and all of this was going to cost LOTS time/money). To this day, I still understand why my parents chose to tell me it simply wasn't feasible anymore. But I also feel your son's pain...because I know that by the time you advance to higher-level Gymnastics, it isn't PART of your life - it IS your life.


Years later at the age of 19 I had my first Grand-Mal seizure (totally out of left field) and woke up in the ER with my nose fractured in 4 places...seriously looking like someone had just thrown me out of a car on the freeway. The next two years were very challenging...23 tried/failed anticonvulsants, around 25 Grand-Mal seizures, 3 incidents of Status Epilepticus (30min, 28min, 11min), 4 MRI's, 3 CT scans, 3 EEG's, 4 EKG's (all with normal results meaning I wasn't a candidate for Epilepsy surgery because doctors had no idea where the seizures were originating from). Better Neurologists entered my life, got me down to only 1 anticonvulsant, and I've only had 3 seizures in the past 5 years.


I saw the Cirque du Soleil "O" show at the Bellagio in Las Vegas last year and started Gymnastics training again (at age 26, which is ANCIENT in Gymnastics years!) with a former Cirque Aerialist. I was 1 of only 30 people (from 4000+ hopefuls) invited to participate in the 2011 Cirque du Soleil live auditions in Las Vegas. I went...I flipped...I didn't conquer (LOL!). I'm sure your son can relate; in Gymnastics there's ALWAYS someone who can do it better than you can. Still, I loved EVERY MINUTE of a once-in-a-lifetime opportunity. I felt validated again as a Gymnast, and I felt connected to myself again. During the roughest patches after my diagnosis, I often wondered "How did I go from elite-level gymnastics to being scared to walk down a flight of stairs??" To go from those difficult feelings to being in the same room competing against these truly amazing world-class athletes brought me great honor and humility. Humility mostly =) I walked out of there thinking "God, I'm OLD!" (I swear EVERYONE 20 years or older had on some kind of brace).


Hopefully this helps your son understand that (1) He's certainly not alone, and (2) This is the life of an Epileptic...there's a certain "ebb & flow" to be expected (from my experience anyhow). When I got better Neurologists, was only taking 1 medication, and *thought* my Epilepsy was banished forever...I felt on top of the world. Then, BAM!-Status Epilepticus and a 30min long seizure (followed by 2 more incidents 2 years apart). Every time I felt like my life was finally 'back on track' and I hadn't had a seizure in years--it seemed to all come crumbling down. Forget physically- EMOTIONALLY that is tough to handle for anyone. But I've learned to draw strength from the good (seizure-free) times, and then utilize that strength when the going gets tough.

So far it has aided me well, and my Cirque audition was WEEKS after being discharged from the ER for the 11min long seizure. I went from being disheartened and frustrated to feeling so inspired just to be there. THAT IS THE SECRET...take it ONE DAY/CHALLENGE AT A TIME. If your son begins trying to analyze what the next 10 years will pan out like, it will only serve to frazzle him. Despite the bumps in the road, I've absolutely loved the last 7 years of my life. But to be honest; had someone told me at age 19 "you have Epilepsy and you're going to experience this, this and that over the next 7 years..." it would have scared the hell out of me and prevented me from truly living life to the fullest. I wish your son only the best for his future - wherever that may take him (God knows I've changed paths too many times to count) - but just the fact that you're on here, posting this on his behalf, tells me he has a loving and understanding support system, and that's half the battle sometimes. I wish you both the best.

Cody

Twitter: @EpilepsySOS

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Comment by Kimmie Milburn on October 20, 2011 at 2:05pm
Cody, Im wondering if we might know you, the gymnastic community is so very small, we train/ed with Tom Meadows and Austin now coaches at Cypress Academy.... we however are close to many former gymnasts, Sean Townsend, The Hamms, Blake, Rjaha, I could keep name dropping but Ive watched many of these guys since they were in highschool onto college and onto the Olympics,  and Austin also competed in Colorado for National Future Stars Championships back when he was a little level 7....and went to camp there...I told Austin about you and he thought it was pretty cool that another former gymnast ( although I think once your a gymnast its always in your blood) has eplipesy :)
Comment by Kimmie Milburn on October 14, 2011 at 9:10am
thanks so much Cody!!  It was very hard for him to make the decision to stop competing ( level 10) he however could not give up being a gym rat, so now he coaches boys gymnastics, we are so proud of him everyday, he truly has a gift for this and loves it.....psst he competed 5 days after being released from the ICU :) crazy kid!!

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