Welcome to my Muscle Walk Personal Fundraising page!
I loved high heels—the higher, the better. I don’t even think I owned a pair of flats!
In my early twenties, while living in the Bay Area, I would find myself flat on the concrete more times than not. Stairs exhausted me and I always opted for the elevator. But I still soldiered through, convincing myself that a couple of extra inches was well worth the pain. Beauty is pain, pain is beauty—that’s what I believed. Whenever I tripped on the sidewalk or bumped into something after losing my balance, I would tell myself that I was just a big klutz, that I wasn’t blessed with grace or coordination. One evening at my parents’ house in Sunnyvale, I scared my mother senseless when I screamed for her to come into my bathroom—my shoulder blade was winging out. Looking back, I think this was the first time I thought something might be wrong with me.
A few years later, I learned what that “something” was—I have muscular dystrophy.
There are nine major types of MD, and I have what is called Facioscapulohumeral Muscular Dystrophy, or FSHD, which is much easier to pronounce. FSHD is one of the most prevalent types of MD affecting adults and children. Muscular dystrophy is a hereditary muscle disease that causes the progressive weakening and loss of skeletal muscles. In most cases, FSHD muscle deterioration starts in the face and slowly progresses to the shoulder and upper arm muscles and then down to the abdominal muscles, legs, and foot extensor muscles.
This diagnosis explained a lot of things in my life, things that I had always made excuses for or brushed under the rug. It was like the puzzle pieces fell into place. However, the picture I found myself looking at wasn’t exactly pretty.
As many of you know, I was diagnosed in December of 2000 when I was 27. I was young, a virtual stranger to heartache, and living the fun-filled life of someone who has few worries. With little knowledge of MD and the fear that came with learning that I had this progressive disease, the only question I had for my doctor was, “Am I going to die”? His convincing reply was, “No”. And that was enough for me.
But all the science and academic research about MD, all the endless hours spent pouring over all the information that I could find, all the talking with my doctor…didn’t really prepare me for the trials ahead.
My condition has deteriorated, so now I use a scooter daily. I can never take a break from worrying about where this disease will take me next. Everything I do requires forethought and planning. How will I navigate getting to a table at a restaurant? What if I have to go to the bathroom? How do I get inside a friend’s house?
But these moments of worry, of overanalyzing—I wouldn’t have it any other way. I have been blessed to be able to look at life in a different light. I said before that beauty is pain, pain is beauty. I can no longer wear heels, but I still believe that saying to be true. MD has changed my life, but even with all the pain and hardship, I would never want anyone to pity me, because the pain magnifies the beauty. I have come to appreciate so many small joys in life that many other people will never be fortunate enough to even notice.
And I get to be an inspiration to so many people—most of all, my son.
This past October, my son, Xander, was diagnosed with FSHD. He is an active, happy, nine-year-old who is now facing the daily challenges of this disabling disease. No parent should ever have to endure this kind of news. I am heartbroken and saddened that Xander will have to live with this disease, but I am determined to show him through example that this condition doesn’t define him.
Xander and I are working together to help raise money for muscular dystrophy. We are raising money for the MuscleWalk in April of 2014. This is an important fundraiser as it replaces the Jerry Lewis Telethon, which was the largest fundraiser for muscular dystrophy. Xander is calling us the “X-treme Team.”
I have never asked for help concerning myself and my disease. But now, on behalf of Xander, I am asking for your support.
Please join me and support the X–treme Team.
Shandy & Xander
Dana & Aaron Childress and Family
Darren & Ashley Schopf
Greg & Phyllis Guinn
Jeff, Barbie and Landon Koerner
Lacey Mills & Pizza Ranch
Mike & Kimberly Mann
Nate & Kristin Robertson
Papa Murphy's Coupon Cards
Steve & Christy Davison
The Voegeli Family
Tom, Cary, Cooper, Bella and Owen Bulis
Xander & Anera Kawabata