I wrote this article for USAT about my experience at recent para-triathlon championship at the Pleasant Prairie Triathlon on June 24th. I submitted the article as part of my role as a USAT ambassador.
On Sunday June 24, the Para-triathlon National
Championship was held at the Pleasant Prairie Triathlon, in Pleasant Prairie
Wisconsin. Thirty four athletes competed
in the National Championship wave and 19 in the Physically Challenged Open
wave.
USA Triathlon (USAT) has created events for athletes with
qualifying impairments to complete not only at the National Championship, but
at any USAT sanctioned race. I am
not aware of any other sport that offers
this kind of opportunity at the grassroots level.
Anyone
that competed in the National Championship wave had to meet a time standard for
their class and go through a medical assessment. I did not have an event last year that was
the required swim distance of 500 meters, so I would race in the physically
challenged open division.
Impairments
that qualify include:
- · Impaired muscle power
- · Impaired passive range of movement
- · Limb deficiency resulting from amputation due to trauma or congenital deficiency
- · Hypertonia, resulting from cerebral palsy, brain injury, stroke or multiple sclerosis
- · Ataxia resulting in cerebral palsy, brain injury, multiple sclerosis, Friedrics ataxia
- · Athetosis from cerebral palsy, stroke or brain injury
- · Visual impairment from myopia, tunnel vision, scotoma, retinitis pigmentosa, glaucoma, macular degeneration
This would be my 5th time racing in the PC Open
division. I have placed 1st
twice in Austin, Texas and in Tempe Arizona. I have Charcot-Marie-Tooth (CMT) which is a
genetic neuromuscular condition.
I have a gene that over produces a protein. It causes the
covering of my nerves to break down.
Imagine a road with lots of pot holes. You get a pretty bumpy ride. The nerve break down means that it takes
someone like me with CMT about twice the energy to do even everyday tasks. I battle fatigue every day. Because the electrical signal to operate
muscles is compromised, they start to atrophy.
In my case this causes issues with balance and foot drop. I can easily
trip when running. The muscle weakness compromises my swim, run and bike times.
I’ve lost most of the muscle in my forearms so my swim is slower
than most athletes.
Many people with CMT wear braces to enable them to walk. I am lucky, I can still run, although much slower than I used to as my CMT progresses. CMT also affects my breathing and I have moderate hearing loss. I have constant ringing in my ears.
Many people with CMT wear braces to enable them to walk. I am lucky, I can still run, although much slower than I used to as my CMT progresses. CMT also affects my breathing and I have moderate hearing loss. I have constant ringing in my ears.
I share this condition with many of my family members and
160,000 Americans. We call it the biggest disease that no one has ever heard
of. There are more Americans with CMT
than ALS and as many as have MS.
When I was diagnosed in 2011, I felt that I was so lucky that I was still so active when many with this condition struggle to write, open a jar, or button the buttons on their clothes. They are robbed of the ability to do some of the simplest tasks of life. Many including some of my own family members keep their CMT a secret. CMT can be invisible to the casual observer. I think sometimes other para-athletes look at me and wonder what I am doing in the competition.
When I was diagnosed in 2011, I felt that I was so lucky that I was still so active when many with this condition struggle to write, open a jar, or button the buttons on their clothes. They are robbed of the ability to do some of the simplest tasks of life. Many including some of my own family members keep their CMT a secret. CMT can be invisible to the casual observer. I think sometimes other para-athletes look at me and wonder what I am doing in the competition.
So here I was still able to swim, bike and run. I felt I had
been granted a gift I wanted to use to inspire those with CMT and to raise
awareness. I wanted to be an example to
others with CMT to remain active. The progress of the disease can be slowed by
staying active.
Before I was diagnosed I had quit competing because of slowing
running times and burning feet. I came
out of retirement and began doing runs and triathlons. I founded Team CMT to engage others in the
mission. We have grown to over 200 members in 39 states and six countries. It was once thought that no one with CMT
could run, yet we have dozens of CMT affected athletes. Team CMT members have
raised over $130,000 for CMT research and programs.
I go to high profile events like the Boston Marathon and National Championships to compete and write about the experience. By doing so I hope those with CMT will choose to be active and open about their condition.
This race was my first triathlon of the season. The nice thing about racing para is accommodations are made for our abilities. For instance the swim start is in the water. No need for me to worry about my foot catching on the run into the water.
I go to high profile events like the Boston Marathon and National Championships to compete and write about the experience. By doing so I hope those with CMT will choose to be active and open about their condition.
This race was my first triathlon of the season. The nice thing about racing para is accommodations are made for our abilities. For instance the swim start is in the water. No need for me to worry about my foot catching on the run into the water.
As I waiting in the water I worried. I was really tired and I
always wonder if I will have the energy to get around the 750 meter swim
course. The buoys always look so far away.
The first race of the year always means a struggle in the swim. I had
dropped out of a swim/run race just a month ago. Several years ago I dropped out of swim in
this same race venue. I just did not have the energy. I wondered if today would
be a swim success or a swim failure. If I can survive the swim, the rest of the
race is much easier.
As I waited I also reminded myself I had swim twice the race
distance without stopping in the pool. The gun went off and I just took it one
stroke at a time. Several times I got
way off course and wasted time getting back in line with the course buoys. About 20 minutes the swim was done.
The bike part is my favorite and the easiest. I feel like a kid
when I ride my bike. I love the feel of the wind in my face. In most races, other athletes, constantly
whiz past me. In a Para race I am more evenly matched.
I was racing a tri-bike for the first time. Because my balance
is compromised, I was worried about the balance. I had a couple instances when
I almost lost balance, especially when I tried to take a drink of water. My bike computer refused to turn on, so I had
no idea of speed or distance. All seemed
to be going well. I had passed several athletes in my category. Disaster struck twice when I missed a turn on
the course. I had followed two other racers.
A police officer came after us and got us back on course. Then a volunteer directed me and another
athlete back on the course instead of back into transition.
The run was very uneventful, but very nice around Lake Andrea
where we had done our swim. The problems on the bike portion cost me first
place. The last time I did this race I
finished in 1:43:42, today my time was 1:59:12 on a better bike. Good enough
for 3rd place. The placement does not matter, what I wanted was my
best race without mistakes. I felt I had
not done my best. I will get a chance
again in a feel months when I race the Iron Girl triathlon on the same
course.
No medal to show for all my work. After waiting for 2 hours, they could not
find medals for the PC open group. This happened the last time I did the
Pleasant Prairie Triathlon. After two weeks and two emails I still don’t have
my medal.
Someone asked me this week how I define success. For me as a CMT
affected athlete, it’s crossing the finish line. Every race I start and finish
is a victory. Success is being the best
athlete possible and using the ability I have to inspire and to raise awareness
of the condition I share with so many others.
I race to put a name and a face to this condition.
I crossed both lines today wearing my Team CMT uniform. Hopefully my follow athletes and the spectators will take a bit of time to learn about CMT. Perhaps they will stop to consider that not every impairment is visible and that many of us have private struggles no one knows anything about. I hope they will learn that a life lived with purpose, is a great life, even with the challenges of a condition like CMT.
I crossed both lines today wearing my Team CMT uniform. Hopefully my follow athletes and the spectators will take a bit of time to learn about CMT. Perhaps they will stop to consider that not every impairment is visible and that many of us have private struggles no one knows anything about. I hope they will learn that a life lived with purpose, is a great life, even with the challenges of a condition like CMT.
Chris
Wodke
Founder
& Manager Team CMT
www.run4cmt.com
Chris is
a triathlete and long distance runner. She is a three time participant of the
Boston Marathon. In 2012 she finished
2nd at Boston
She has
appeared three times at the Paratriathlon National Triathlon Sprint
Championship. She was the 2012 and 2014 National Champion Paratriathlon Open
Division Champion.
In 2014 she was the PC Open Champion at the Duathlon National Championship and at the Aqua bike National Championship in 2016. She represented TeamUSA at the Aquathon ITU World Championship in Chicago in 2015 and at the World championship in Cozumel in 2016.
In 2014 she was the PC Open Champion at the Duathlon National Championship and at the Aqua bike National Championship in 2016. She represented Team
In 2014 she represented the U.S. as a paratriathlete at the Pan-American
Triathlon Championship in Dallas ,
Texas USA
She
travels around the country raising awareness of CMT.
She is
the author of the book, “Running for My Life” that details her experience as a
CMT affected athlete and the book “Soup Sundays, A Journey Toward Healthy
Eating”.
Team CMT
is a group of athletes and supporters working to raise awareness and to find a
cure for CMT. We have 213 members in 39 states. We also have members in Australia , England ,
Scotland , Canada , Vietnam ,
Turkey , Finland , France, Ireland, Poland , Iran ,
Norway and Sweden
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.
Additional Link
Follow CMT affected Paratriathlete Timmy Dixon
http://cmtamputee.wordpress.com/
Follow CMT Author Chris Steinke
https://cmtandmesite.wordpress.com/2017/01/30/what-is-charcot-marie-tooth-disease/
http://cmtamputee.wordpress.com/
Follow CMT Author Chris Steinke
https://cmtandmesite.wordpress.com/2017/01/30/what-is-charcot-marie-tooth-disease/
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