Welcome to our virtual community! Start by browsing through the personal stories featured here.
We have organized these stories into two categories: Your Stories -- stories sent to us at the Spondylitis Association of America -- and selections from The Faces of Ankylosing Spondylitis project. You will also
find episodes of
AS Life Live!”
an online talk show for people with AS hosted by Dan
Reynolds – an AS patient and lead singer of the rock band Imagine Dragons.
We’d love your story as well! Send it to us at Programs@spondylitis.org
By Katie Allen
Friday, January 1, 2016
Just after 11:30 AM on June 2, 2013, I crossed the finish line at the Deadwood Mickelson Trail Marathon in Deadwood, South Dakota. In 3 hours, 37 minutes, and 45 seconds, my friends and I power-walked (and ran a bit) 13.1 miles through the Black Hills. Just four days prior to the marathon, we practiced a part of the walk at 7.15 miles which took us nearly two-and-a-half hours so I never expected to be able to complete the half marathon in under four hours—never mind just over three-and-a-half!
For the average person, participating in a marathon is a challenge for sure. It takes training, dedication (or insanity) and the heart to pull it off. As a person who has lived with ulcerative colitis, Crohn’s disease and ankylosing spondylitis my entire adult life (more years than I’d like to admit thank you very much), the idea of a marathon was quite frankly… NOT an idea! At least not in my mind. I was not the athletic kid, I was playing the piano or being the band geek. Running? Ha!!
Once my illnesses took over my life, how my back could handle something or the worry of where the next bathroom would be found, ruled my life. So the idea of a marathon induced panic or pain just thinking about it! My fellow Crohn’s and colitis friends know what our thoughts are: “What if I have to poop and there is no bathroom? I SO am NOT pooping in the woods!!” Not the sexiest thing to talk about I know, but that is our reality.
Hanging around in the freezing cold waiting for the starting gun, it was fun to see the various tee shirts of people promoting their causes. It made me wonder what other stories were out there. As Batman slid through the crowd towards the runners starting locations, it never occurred to me that he had a story, I just figured it was something fun. I later learned in the newspaper that his name is Tim, he is 26 years old, from Pennsylvania and a testicular cancer survivor. Daily running is what helped him heal and as a lifelong fan of Batman, he thought he could lift others spirits by wearing this costume. Sunday was his first half-marathon too. Gives me goosebumps, how about you?
Everyone out there on the course had their own goals I’m sure. Some were hoping to cross the finish line at a certain time. Others striving to beat last year’s marathon time. Perhaps others were hoping to have their fastest mile. For me–I just wanted to get to the finish line… in one piece… without having to be carried home… or to the hospital!
Keeping up a respectable pace, I was amazed when the first hour was done and we were already heading in to our fifth mile. I started sending text messages to my husband because I was worried that we were going to finish a lot sooner than projected, and he and my mom were going to miss being at the finish line when I crossed it. I imagined crossing the finish line and tears would well up in my eyes. It was particularly important for my mom to be there–to see what I accomplished. My mom has been there through all the crappy health crises (and then some). It was about time there was something REALLY good that happened with my health and my body! In my excitement about having my mom there, I exclaimed to my girlfriend in a loud voice with arms raised as though I was a preacher on a Sunday morning behind the pulpit, “She must bear Witness to my Accomplishment – Yes, She Must!!!!” LOL… Needless to say my friend sped up a bit, so I had to jog to catch up with her. I suddenly realized, I just jogged and it didn’t hurt!
As I crunched along the trail, I thought back to the time when I couldn’t walk because of the damage in my spine from the fistula caused by my Crohn’s and the fractures from the osteoporosis. I remembered using my walker to take slow, painful steps from the living room to the bathroom that would bring tears to my eyes from the pain, frustration and fear I lived with on a daily basis. I thought back to recovering from my back-to-back surgeries in 2009 and how my right hand was practically glued to my left side to provide a modicum of relief from the nerve pain from the surgical site where my kidney used to be. Every step or breathe I took was like a knife stabbing me between the ribs. After every surgery, I slowly regained my strength. I always pushed to get back to “normal.” When I started walking to regain my strength, I never thought of those steps as a precursor to a marathon.
Around the 7th mile, my feet really were starting to hurt. I was having some dull aching in my left side where I only have periodic nerve pain, and my hip flexors were starting to swear at me. Rather than focus on what was hurting, I changed my thought process. I brought Reiki in to my energy centers and visualized light filling my body and carrying me down the trail. I channeled Louise Hay by creating my own positive affirmation. I just repeated to myself “I am walking with ease.” I focused on anything and everything that was opposite of the pain. I brought in my lessons from one of my favorite Buddhist teachers Jack Kornfield. When my feet were sending shooting pains, I just noticed it and said “tingling… tingling… tingling… it’s just nerves tingling and it’s temporary.” I heard his voice over and over in my head, and the pain subsided.
This marathon… besides being an expression of my healing, it was an opportunity to use the many things I’ve learned over the years. That investment in my personal library of inspirational/self-help/spiritual books was totally worth it! I didn’t fall back in to my old patterns of focusing on the pain. Instead my focus was on the finish line and how I would feel when I got there. My focus was on the energy of nature and our interconnectedness. My focus was a celebration of life, of my life and the ability to not just put one foot in front of the other…but to run those last few steps across the finish line and declare my willpower the winner!
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