This one’s been sitting in my drafts folder for a solid three weeks. Here we go.
A couple weeks ago, Ali from Ali On The Run wrote a post about what it’s like to run with Chron’s Disease. It’s a really big, messy (pun totally intended; I hope she also finds humor in that) part of her life, and one I can only assume she frequently gets questions about. She’s brave, because of and in spite of the messiness. Dystonia, like Chron’s Disease, is messy, it affects the body and the mind, and is very different for anyone who has it.
My case developed about five years ago, completely out of nowhere.
Running was great throughout college. I was fast and happy about it. I helped my team get to Regionals and then Nationals twice. I won road races in the off-season and had a solid amount of hardware. Road races were my THING. The longer = the better. Then in 2012 things went south. The day after Cross Country Nationals of my senior year I went for a shake out run, and things felt…different…and heavy. I chalked it up to a hard season of racing and didn’t think too much about it for the next week. But from that day forward my legs didn’t behave or perform the same way they used to—and never would again.
For the first couple years I had no answers. All I knew was each step felt so hard; like cement blocks were attached to my shoes. The heaviness was unbearable. I started dreading runs because I knew how I’d feel.
Another year in I started experiencing incoordination along with the heaviness. All of a sudden my knees would kick out sideways or my feet would turn inward and scrape my calves and ankles leaving them cut up and bloody; the foam support in every pair of shoes was stained maroon and brown.
Long runs evaporated. Speed work? Gone. My minute per mile dropped from 7:00 to about 10:00 on average. My confidence went with it.
At this point, about three years in, Dystonia had completely taken away my ability to run and climb stairs properly.
I saw doctor after doctor. Some told me I was training too much. Some told me it was all in my head and suggested therapy and anti-depressants. I hated those doctors. This wasn’t normal and I knew it.
A breakthrough came when I visited a neurologist at The University of South Florida. She tested for the big, bad stuff like MS and other central nervous system degeneration. When they came back negative she suspected I suffered from a neuromuscular disease called Mysathenia Gravis. I was prescribed medication, instructed to take the meds, then go for a run to determine whether or not they helped. The short answer: they absolutely did not. The medication sent me to the hospital. You can read about it here.
After failed attempt number one, I moved onto another doctor in the same location who is still my doctor to this day. He suspected and ultimately diagnosed me with Dystonia, a movement disorder that comes in all degrees of severity. Mine is task-specific, which means I only notice it when I run or perform running-like movements (stairs). I’m lucky in that sense.
I had a diagnosis that made sense, but no cure. Because there isn’t one. The most popular treatment for Dystonia is Botox, so I started receiving injections in 2014. The Botox paralyzes the muscles so they don’t spaz during activity. Not many people know that Botox was originally developed for medicinal purposes. It got a bad rep when doctors realized it froze faces and that people would pay for that. 😛
They stick it right in my ass, too, so it’s a literal pain in the butt.
LIFE AND RUNNING WITH DYSTONIA
It’s been a journey—a really hard and ugly journey. I continue to run as best as I can, with hundreds of walk breaks. Running has been such a huge part of my life for so long. It gave me a life and friends in college. It gave me a purpose, and giving that up feels almost impossible.
Here’s what running with Dystonia really looks like.
This was the Zimmerman Kiser Sutcliffe Winter Park Road Race 10k and 2 Mile earlier this year in March. I ran both distances because Challenge is my middle name. So is Suffer. This is happy Lindsay after she crossed the second and final finish line. Holding the shiny medals, the pretty swag, with a tummy full of coffee and post-race nanas.
I was excited that morning. My last road race was the Disney Marathon in January, and I was craving another—anything to get back into it. ANYTHING to make me feel like part of this running community again after working through some serious post-race blues.
Then reality hit again. When I’m not running I forget I have Dystonia. When I’m biking, sometimes I BELIEVE I don’t have it.
The national anthem played. We huddled at the start line, and we were off…and then I remembered.
This is what Dystonia looks like. My legs don’t feel like mine. My feet scrape the pavement, barely making it off the ground. Sometimes it feels like my heart muscle is the only one that will make my legs move.
I crossed the 2-mile line in 18:53. In college, about six years ago, I ran a 5k almost a minute faster. Before Dystonia my knees didn’t kick to the side. Before Dystonia I didn’t drag my heels, ruining one pair of shoes after another.
My brain knows what it should do but it can’t.
What I see. What you see. What everyone sees is my reality. Ugly, remember?
HOW I DEAL WITH DYSTONIA
Talking openly with friends and family.
Staying active; cycling, going for walks, doing sweaty HIIT workouts.
Setting and achieving a goal every week, whether it’s in training or life.
One. Day. At. A. Time.
My symptoms have evolved year after year. Some months my right leg is worse, some months it’s my left. Right now, both aren’t doing so hot and they’re causing injury that I have no say in. I feel like I’m cleaning up the mess Dystonia has left behind.
I think a big part of running my first marathon was to prove to myself it was possible; that I could conquer something SO BIG that’s been on my bucket list since college. And I did it, which I’m very very proud of.
My current goal is a second marathon in January 2017, but injury is making that tough to train for right now. I’d also love to complete an IRONMAN, but that’s also TBD depending on symptoms.
At the end of the day, I know I am one of the lucky ones with Dystonia. Some people can no longer care for themselves.
If you made it this far, I only ask that you remember how lucky you are. Please don’t take a day of running for granted. If I could do anything shy of erasing this from my life, I’d go back to 2012 and tell myself the same thing.