For those of you who do not know me well, I have had a headache every day of my life since Thanksgiving Day 1991. I was playing a friendly pick up game of football with family, when bad luck caused my former brother-in-law’s elbow to relocate my nose under my left eye. A freak accident, I was unconscious before I hit the ground, sustained a severe concussion, and have had a headache ever since.
Those headaches have sent me on a seemingly never-ending journey of medical appointments with Mayo Clinic and our local clinic affiliated with Mayo. MRIs, sleep studies, EEGs, etc. Which eventually lead Mayo Clinic to discover a venous angioma and cavernoma in my brain. And tiny periodic leaking of blood from the angioma “irritates” the region of my brain it is in, which periodically makes me feel sick to my stomach. Which Mayo Clinic has recently diagnosed as seizures. With those seizures causing me to be formally diagnosed with epilepsy.
I do not share that information with you in effort to look for special treatment or pity! Rather, I share that information in hopes of encouraging and inspiring others who face various challenges in life, medical and otherwise, to make some delicious “lemonade” as best you can, whenever life deals you lemons.
In the immortal words of Andy Dufresne from the movie Shawshank Redemption: “Get busy living, or get busy dying.” I had a choice to make back in 1991, and every day since. And I chose, and continue to choose, to get busy living! I have enjoyed a wonderful career creating map illustrations for over 550 clients in thirteen time zones. I have a wife and two amazing daughters, and have spent time (for work and play) in ten countries. And all but roughly 6-8 of the 1,513 disc golf courses I have played in my life have been played after sustaining my concussion.
I know other people in my life, when met with some bad medical news, or who have faced the end of a relationship, who essentially have ”got busy dying,” and it is heartbreaking to watch. People who have so much happiness, love, creativity and ideas to give, reduced to feeling sad/bitter all the time. Essentially angry at the world, while waiting to die.
Disc golf has been a big part of both my physical and mental health over the years, and not a day goes by without me feeling grateful to Steady Ed (Headrick) for creating such a marvelous sport for us all to enjoy! So when I recently learned that I have epilepsy, I haven’t viewed that as any kind of ”death sentence” to the fun part of my life! Rather, I have viewed it as an opportunity to help others with the disorder feel more comfortable in talking about it. Use the opportunity to help introduce more people to great organizations such as the Epilepsy Foundation.
As far as seizures are concerned, I have been extremely lucky…only experiencing nausea. You and I could be in a car, meeting or enjoying dinner together, and you would never know I was having a seizure! So I have been trying to count my blessings and continue to ”get busy living!” And with proper medication, Mayo thinks I have hundreds of new courses left in me! 🙂
If any of you out there have been playing disc golf with epilepsy, have been dealing with other ”lemons” that disc golf has helped you live with and overcome? Feel free to share your own story in the comments section of this post. Let your choice to ”get busy living” help serve as an inspiration to others too.
Magic Number = 487 (1,513 Courses Played)
About Tonn’s Travels
How it All Got Started: Tonn’s Travels >>
A main purpose of this blog will be to share information, helpful tips and tricks (everything from health and fitness to methods for saving money while you’re out “bagging courses” of your own), and ideas for better, safer course design. But I am also hoping to inspire others with my passion for the sport, via the stories I can share about all of the interesting experiences I have. All of the interesting people I meet. All of the amazing courses I am blessed to have the opportunity to play. If I can inspire even a handful of individuals to get off the couch, get “out of their bubble” or “security blanket” and explore more of this big, beautiful planet we all call home? Then I will consider this effort a success.
About Derek
Derek Tonn is a member of the DGA’s Ambassador Team. His company, Mapformation, LLC, has been DGA’s partner in the development of disc golf tee signage since 2012. The longer our two companies have worked together, and the more Derek has gotten to know all the great folks at DGA, the more he has wanted to formally sing the company’s praises. The more he has realized that “Steady” Ed the father of disc golf and the modern day Frisbee vision for the sport and his company perfectly describes his own interests and priorities related to disc golf, and the more Derek has recently been encouraged to share his story.
Derek,
Your story is extremely inspirational to me. I’m also an avid disc golfer and suffer from seizure disorder. I was playing baseball in 2009 when I ran into the catcher sliding into home base. I went into school the next day and noticed that I would start twitching any time I was reading. This went on for a couple of years until one day I was reading and started twitching so much that I had a grand mal seizure. I went on to have another one not I’ll on after as a result of being prescribed the wrong medication.
My seizures have made life harder. Altogether I’ve lost driving privileges for a total of almost two years. My short term memory seems to have taken a hit as well.
But through it all I still consider myself very blessed. About five years ago I had a seizure while driving down the freeway. I was able to leave the hospital the same day with absolutely no injuries to myself or other people on the road.
One thing that I have noticed about my seizure disorder (as with all disorders and disabilities) is how often we find other people AND OURSELVES saying, “you can’t do that” or “you shouldn’t do that”. I was lucky enough to land my dream job teaching art two and a half years ago and I run 5K through my neighborhood almost every day. Although I certainly pay attention to my body and I completely understand that my seizure disorder does require me to understand and respect that my body does have certain requirements and limits; I also wholeheartedly believe that I am living my best life right now.
Not too long after my first seizure, I was introduced to disc golf. I quickly became addicted. I am absolutely horrible for the most part, but I find the experience of playing to be cathartic. It’s certainly gotten me through some of the more challenging points in my life.
Thank you so much for this article. It’s so reassuring to see that there are other people out there who are making the most out of an oftentimes difficult situation!
Thank you for your comment, Jacob. I am EXTREMELY lucky, when it comes to my seizures. As apart from a bit of occasional additional blinking and/or swallowing? Mayo Clinic, after having me in an epilepsy observation unit for multiple days, says there are no physical (or cognitive) consequences that occur during my seizures. I could be staffing a sales booth for my job, or giving a presentation behind a podium, or driving a vehicle, or just about anything else…and they say that I should be fine. SAFE. They just don’t want me ever doing anything such as swimming by myself in the ocean (I love to be out in the ocean) or driving when I don’t REALLY need to (another person I am with could drive instead of me), as if anything unusual did ever occur? It could potentially be more dangerous.
I remember one time, out course collecting in Southeast Nebraska, where I was driving and all of the sudden realized that I didn’t know how to get home! It was not because I didn’t have a map, or that I didn’t know what roads to use. Rather, I could not remember where home was. 🙁 All I could remember was that home was somewhere “East” of me…so if I kept driving East, I would be fine until my memory cleared up. And after 4-5 minutes, everything went back to normal and I knew where home was again. But my driving or cognitive ability was not impaired in any way…apart from briefly not knowing where “home” was. Very, very strange.
If I can ask, where do you live? I certainly cannot make any promises, but if you live in an area that I will be passing through on future trips for work (and course collecting), maybe we can meet up and throw a round? I am not a great player either, in the competitive sense. I am generally “lights out” in my approach game, and have gotten much stronger/longer off the tee after learning how to throw the DGA Hurricane and DGA Undertow! But my suspect putting game from 30-40+ feet would prevent me from doing a lot of damage in Open/Advanced divisions at A/B tier tournaments. I’m good enough to hang with most players and have fun! But my putting game would need dramatic improvement before you’d ever be hearing about me on tour.
Derek,
Glad to know I’m not alone in the world of temporarily losing my memory. Although I haven’t had any cases quite as extreme as yours, I certainly find myself spacing out on a far too regular basis nowadays.
I live in Columbus, Ohio. We have some pretty decent courses around here, most notably Hoover Dam (Home of the annual Brent Hambrick Memorial Open) and we’re allegedly getting a really awesome course within the next few years. My game is the exact opposite. I can’t drive to save my life, but I can usually string together a decent midrange and putt game.
I’d love to throw a round with you if you’re ever in the area!