Kyle Bryant Friedreich’s Ataxia Race Across America RAAM
You are about to pedal your trike across several states, with a desire to span the distance between two oceans. There are many mountain passes that you must cross, several long deserts, countless horrible road conditions, heavy traffic in places, and numerous other obstacles that will challenge you to the very core. You wonder if you have what it takes to make a trike trip like this. One excuse after another crops up in your mind, each attempting to convince you that rational thinking has left your normally-sound mind. You can’t do this! It’s a bigger bite than you can chew! Yet somehow, another inner voice rises above the din of negative images, the will to make your vision reality, and so the debate rages.
Into this mix of emotional turmoil, let’s toss in a few more facts about you and see where they lead. On top of all the typical reasons for not riding across America on a human-powered tricycle, an endeavor most folks would label crazy for any able-bodied person, your muscles are degenerating on a daily basis because you have a genetic disorder that is destroying your nervous system. Each day, you know that you will never be this strong and capable again, that tomorrow will bring further damage to your increasingly frail body. Your mind is unaffected, as you watch your body slowly and painfully ebb towards non-existence, as you ponder what the last moments might be like.
You are only in your mid twenties, and have always been strong, cycling everywhere on bikes. Now you can no longer ride a bike. A doctor told you at age 13 that you are affected by a disease named after Nicholaus Friedreich, a physician who discovered the condition in the 1860s. Your nervous system has degraded to the point that you walk clumsily, your leg muscles are doing all they can to even keep you upright, and your speech is slurred. Your arms are similarly affected, so doing ordinary movements is becoming a greater challenge as time progresses. Your doctor told you that one in fifty-thousand people are so affected. It had to be you!
It gets worse, much worse! The trunk of your body is being hit too, you face foot deformities that will hasten the inability to walk, and you are slowly losing sensations in your extremities, which will spread to other parts of your weakening self. Your body is easing ever so tortuously into a profoundly deformed state, as your realize that you become tired ever more quickly, and must just rest on a couch or chair often. Your eyes are involuntarily shifting back and forth rapidly, and you can’t stop them. Your spine is beginning to take on a scoliotic curve to one side, which may eventually lead to breathing problems. You have shortness of breath, and your heart palpitates as it advances into heart disease, which leads to enlargement of the heart and its eventual failure to keep you alive.
Somewhere between 10 to 20 years after being diagnosed, you will be forever bound to a wheelchair, and the ten-year mark is long since history. Eventually you will be totally incapacitated, and as your sharp mind experiences all this, the thought of death in your 30s looms in your mind. You were once so strong as you pedaled your bicycle wherever you wished to go. Your determination to prevail is still powerful however. You will not go out quietly! You are a warrior, taking a strong stand with every bit of strength left in you. You will fight this nemisis because to do otherwise is not part of your spirit. Despite your doctor’s pronouncement that no cure exists, you will use yourself as the catalyst to find one!
You have a will of iron. You are an iron man who is determined to make a difference! You will work to stop this horror for future generations. You will send out a rallying cry to enlist the power of the masses in getting the word out and raising needed funding for research. You will start with cyclists, as they are people to whom you can relate. You will ride a tricycle for 3,000 miles in 9 days to make this vision come true, while perhaps knowing that it could be one of your last great acts of defiance. You will make a difference, one way or another.
* * * * * * *
You might well relate to the first paragraph of this tale, having perhaps dreamed of a long trike ride, but the rest of the narrative is probably as foreign to you as another language. That’s not you! You’re normal. It may not be you … but it is Kyle Bryant. This is his life. How can any of us able bodied people fall into depression or self-doubt as long as folks like Kyle must brave each new day, days that you and I can control and improve, but days that are ever more challenging for Kyle. He no longer can ride a bicycle, so he is now finding his way around on trikes like the ICE Q and Catrike 700, three-wheeled human-powered vehicles that allow his degenerating body to still move quickly and nimbly throughout our landscape. And unlike you or me, who get stronger and healthier with each ride, Kyle’s trike journeys do not improve his condition. At the best, they may hold it at bay for just a wee bit longer … if he’s lucky!
With that introduction, please watch the following short video clips to bring this all to life. Meet Kyle Bryant face to face, right here on your computer screen. Experience his life, his struggles, and his iron will. Learn how a recumbent tadpole tricycle, a machine we often use only for recreation and pleasure, is the critical tool that allows Kyle to reach out with what he has left and change the world. A simple white trike, part of a complex battle to defeat a dark menace, is being ridden by a true knight of humanity in a Herculean effort to open the eyes of the world to Friedreich’s Ataxia, the medical term for this yet to be defeated nightmare of a disease. And, if any of this speaks to your heart, you too can be part, as you shall soon see …
* * * * * * *
Kyle (on the trike) … and a lot of friends!
To give you an idea about the Race Across America, the event Kyle has taken on, spend a few minutes to watch this 2008 promotional video of the event, that is heralded as the toughest athletic challenge in the world:
* * * * * * *
Here are a few words by Kyle himself, as found on his Ride Ataxia website, under Kyle’s Story:
“Little did I know this was just the beginning and this disease would lead me to things beyond my imagination.”
For the first half of my life I had no idea that I had Friedreich’s Ataxia. I played sports and carried on just like other kids. When I was thirteen, watching me play baseball, my Dad noticed that something was wrong. In the beginning, my family simply called it clumsiness, but as my coordination and muscle control continued to deteriorate, we started looking for answers. After a year of searching, my family and I were unsettled with the diagnosis of FA not knowing what this disease would bring to our lives.
Many Ataxians are all too familiar with that helpless feeling, the “there’s nothing we can do my life is over” feeling. Two and a half years ago I had that feeling when FA had progressed to the point that it was unsafe for me to continue riding my bike. I was quite frustrated and I figured this is the beginning of the end. Little did I know this was just the beginning and this disease would lead me to things beyond my imagination.
I found a trike and started riding. I fell in love with the freedom that came with it. I decided I wanted to do more. I wanted to do something huge that would be life changing for me and that would be an inspiration to all suffering from the effects of Ataxia. So teamed with my family and some close friends we made a 2,500 mile journey from San Diego to Memphis on bike to the National Ataxia Foundation Annual Membership Meeting. We had so much fun on that trip we decided to do it again the following year this time Sacramento to Vegas. Our Vegas trip was amazing because many people came together to participate and fight this disease.
Currently, there is no treatment or cure for Friedreich’s Ataxia. However, I find that strenuous exercise is the best treatment for me. Cycling boosts my physical, mental and emotional strength. Although Ataxia is slowly impairing my physical ability, I have never felt better than I do after a long ride. Cycling is my therapy. When I feel frustrated I can crank out 30 or 40 miles leaving all my frustration on the bike trail. Cycling has boosted my confidence. Cycling gives me a platform to address Ataxia with friends and coworkers. I am proud of my ability instead of ashamed of my disability.
I have found that life is not over and there is much I can do. I am confident that the doctors and researchers are doing all they can to find a treatment or a cure. Until we find a cure, I plan to have fun staying healthy and active as I fight this disease.
Additional useful links:
- firstname.lastname@example.org (email contact for Kyle)
NOTE: When you email Kyle currently (June 2010), you receive this automated response:
I will not be checking email Starting June 7 until June 24 due to my participation in Race Across America as a member of Team FARA. Please follow us at http://teamfara.blogspot.com. During June 7-11 and June 22-24 I will be available on my cell phone at 916-203-3238.
If you have an urgent issue during June 12-21 or if you are trying to coordinate a time to meet the team for a food/supply drop during the race please call Felicia DeRosa at 845-489-5790. I will try my hardest to return your email after the race but if I don’t get back to you please resend your message after June 24.
Thanks for your support and I’ll talk to you soon.
* * * * * * *
To Purchase your own RideAtaxia team jersey, contact John Hartigan at email@example.com.
* * * * * * *
THANKS FOR READING AND LEARNING!
Always be happy for what you have …
Trike on Kyle! You inspire us all! Thanks …
your friend, Steve