"We will go to the moon and do other things, NOT because they are easy but because they are hard." John F. Kennedy.
On Monday I applied for the Boston Marathon. I got to apply Monday because my time from the Madison Marathon was more than an hour under the qualification time. The reason my time is so far under is I have applied for the "Mobility Impaired" division.
I set running Boston as a goal, not because running a marathon is easy, but because it is hard. Boston is one of the toughest races to get into and one of the toughest to run. I am running it because the medical community thinks those with CMT can't run. I am running to raise awareness about CMT and to educate the public about those of us with CMT. I want those with CMT to know that you can accomplish many things even with this disease. I am running to blaze a trail for my other team members with CMT. The B.A.A. was clueless about CMT. Next time a Team CMT athlete applies they will at least have heard of the disease.
I was excited by getting so close to my goal, I shared with a co-worker about my Boston application. He told me I was a scammer. I was just like one of those people who are healthy and park in the handicap parking spaces. He said I am taking the place of someone deserves to be there like an amputee. When I explained I have an inherited neuro-muscular disease, he informed me there is nothing wrong with me since I run marathons.
It bothered me, because I also wondered how I will feel lining up with other athletes that are amputees.
I don't want to take the spot of anyone that deserves to be there. The division is reserved for those athletes with conditions that prevent them making the time standard. I know that my CMT prevents me from making the standard no matter how hard I work. Boston is the place for the top runners to compete. The fact that I am an hour under the time standard even with CMT shows I deserve to be there. Even the runners on my team with CMT will be hard pressed to make the 6 hour time standard.
The other reason it bothered me was no one knows about CMT. If I had told my co-worker I had MS, he would have nodded his head in recognition and that would have been the end of the conversation. There are more people with CMT than MS in the United States. While I can't do anything about CMT, I can
at least make CMT a disease everyone has heard about.
The comment that there must be nothing wrong with me because I run marathons hurt the most. Many of us with CMT look ok and the challenges we face are not visible to the average person. Even someone like myself with a mild case face challenges every day. Some days I have profound fatigue that makes it tough to get through the day much less a work out when I get home. I am much much more vulnerable to injury. I can't run everyday. I don't have enough range of motion in my ankles to walk right much less run. It is estimated it takes a person with CMT twice the energy to do tasks like walk than the average person. So not only am I a slower runner due to CMT, it probably takes me twice the energy. Imagine being out there for 5 hours expending twice the energy of the average runner. Just training for and completing a marathon with CMT is a major feat. Plus this progressive disease may eventually steal my ability to run.
So yes I deserve to be at Boston and will line up proudly for Team CMT if the Boston Athletic Association accepts me. The athletic limitations I have faced have made me more determined as an athlete. First to found Team CMT, then to set the goal of running Boston. When I was diagnosed I realized what a gift it was that I could even run. I intend to use that gift as long as possible and to raise awareness and educate through my efforts.
I don't know if I will run in Boston next April. If I'm not accepted, it just means God has something else in mind for me. If that makes me a scammer I am willing to live with that.
Founder & Manager Team CMT
Team CMT is a group of athletes and supporters working to raise awareness and to find a cure for CMT. We have almost 100 members in 17 states. If you wish to join us visit our web site.
CMT or Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It affects over 155,000 Americans (as many as MS). It is a disease of the nerves that control the muscles. It is slowly progressive, causing loss of normal function and or sensation in the lower legs/feet and arms/hands.
Symptoms include; muscle wasting in the lower legs and feet leading to foot drop, poor balance and gait problems Atrophy in the hands causes difficulty with manual dexterity.
Structural foot deformities such as high arches and hammer toes are common.
Poor tolerance for cool or cold temperatures and many people have chronically cold hands and feet.
Additional symptoms may include fatigue, sleep apnea, breathing difficulties and hearing loss.
Running, triathlons, impaired athlete, paratriathlon, USAT, running and CMT