Tuesday, December 9, 2008

No one ever says I want to grow up and be in the Paralympics....

I have a good friend of mine who says, "No one ever dreams of growing up and competing in the Paralympics." This is not meant to be 'glass half empty' spiel. It is simply that. As a kid you dream of becoming an Olympic athlete. The paralympics is amazing at that. It gives us something extremely challenging to strive for, but I think below the surface of the hardworking, 'glass half full' exterior our hearts break because the Olympic dream is out of reach.

This is the (very) rough draft of a letter that is going to Senator Murray's health advisers. I will be attending a meeting on the 12th of December in hopes of bring awareness to FSH muscular dystrophy and the lack of research being done.

I was diagnosed with FSHD shortly after my 20th birthday. I knew for a good 5 years before that that something was wrong, and after being diagnosed looking back all the signs were there. I was unable to whistle, drink through a straw and I slept with my eyes partially open. It wasn't until over the last year that I have come to realize the devastating effect muscular dystrophy has had on my life. Although I try and keep a positive outlook and 'live' my life, thinking about how my disease is going to progress and how it has changed the course of my life leaves me feeling lost and helpless.

My brain is programmed to be an athlete. I competed in athletics since I was very young and loved every minute of it. I marveled over gymnasts, for their absolute dedication to their sport. I loved the fact that they trained everyday for hours on end to perfect their craft. I was not a gymnast, but a volleyball player. But I took the same dedication and determination and lived for the day that I could devote everything I had to my sport. It became clear about my junior year that I was not progressing at the rate of my peers. In fact instead of peaking, I was declining. I was devastated, and for the life of me could not figure out what the problem was. I felt as though I was working twice as hard as everyone else, and yet my skills and endurance were getting worse. I finally convinced myself that my athletic goals were really not that important to me and that my heart just must not be in it anymore. Shortly after I was diagnosed. I continued to live in denial for the next 4 years about how FSH really affected my life.

In the last year I have started competing in triathlon. I have been lucky to be a part of the Challenged Athletes Foundation and actually race against people of similar disabilities. I train every day with a stern voice in my head not to work to my potential. Because if I do, I might permanently loose muscle. It's a double edge sword. I have to compete for my soul, but I am also doing irreversible damage to muscle in order to do what my heart desires. Every day is a constant struggle to find a healthy balance.

I will not have biological children. This has been a heartbreaking decision for me to come to. But with a 50/50 chance of having a child with FSH, I just wont dream of it. Bringing a child into this world, you want them to be able to do whatever they want to do. Not being able to do what my heart desires has been the hardest thing in my life. It haunts me every morning I wake up. And I would not be able to live with myself if my child had to go through the same thing.

It is hard because looking at me it is not always noticeable that I have a disability. I think because of the nature of this form of muscular dystrophy it doesn't always get the attention it deserves. It's physical and emotional effects rival those of other diseases and dystrophies, and yet it is not researched as other disorders are.

Sunday, October 26, 2008

Bitter Sweet

Most of my afternoon was spent watching XTERRA Worlds in Maui. For those of you who don't know, I embarked viciously on the road to XTERRA starting last October after realizing that muscular dystrophy was not going to take my competitive spirit. It's crazy to look back at the fact that I have only been on a bike and swimming for a year. My heart was after Maui and unfortunately due to a few different circumstances I was unable to make it there this year. It has been so great meeting other athletes that have not let their circumstances prevent them from being active and competing. Doctors told me to quit athletics and take part in gentle physical activity. Well there is nothing gentle about XTERRA. Megan Fisher was the first female "challenged" athlete to complete Worlds today. It is great that she is paving the way and I can only hope that she will have some good competition in the future! Also, congratulations to David Kyle, Andy May, and Ryan Moulton!

Monday, October 6, 2008

First Group Ride

So I went on my first group ride on Saturday. It was with the Valley Athletic Club/CBC team. Everyone was very nice and helpful. I had a great time despite the torrential downpour....which made things a bit more challenging for me. I feel like I did pretty well, but I'm pretty sure it was a very, very easy ride for most of them. I rented an all carbon bike for the ride. Matt had been letting me use his Allez in San Diego and I haven't purchased my own bike yet. But after riding the much lighter bike, I am now planing to spend way more than originally planned on a bicycle. I am really excited about it. Hoping to have the funds secured so I can get one at B&L while I'm down visiting Matt this coming weekend. I might even race in the TT at Fiesta Island while I'm there. I am absolutely no good at this cycle thing, but I'm having a blast and look forward to learning a lot from the girls on the team.

Saturday, September 20, 2008

My ONE and ONLY rant for the winter

So I was pretty bummed today. It is really...and I mean really....dark and gloomy. I was also not very stoked on riding my mountain bike with slicks on the road. After spending the summer in sunny San Diego riding a road bike....this was quite the opposite. So I am going to use this post to bitch, put things in perspective, and move on.

I can hardly believe that I rode my mountain bike on the road all last winter. Today it felt like I was riding through sand. And it took me an hour to go 10 miles....LOL! So the ride wasn't what I wanted it to be. At least I got a ride in.

The weather sucks. But I thought back to last winter and realized that I would be stoked on today because although the ground was wet....it's wasn't raining. Making it what would be classified as a 'good day.' There is something about training in crappy weather that makes me more focused. Small town + bad weather + not much to do = very focused training. Train, eat, sleep, work a little..... looks like it will be my winter. Not all a bad thing.

Oh, and this was at 2 PM!

Tuesday, September 16, 2008

Inspired by this crazy little town...

So I have been back in Olympia for 4 days. I have come to the conclusion that this town makes me smile. But really, it's just an easy going place that the weirdest shit happens. Lol.... so I thought that this time around I would document it for pure entertainment purposes. It also doesn't help that training through the winter here gets a little lonely and boring. So it will give me something to do. And if this winter is anything like last winter...stay tuned for what might become the script to a horror movie....