I was diagnosed with a rare, progressive and incurable pain disorder called Complex Regional Pain Syndrome in 2010 after a running injury. The injury healed but I experienced increasing and unrelenting pain disproportionate to the original knee sprain.
As the pain became intolerable and my body treated every input as intense burning pain, I became desperate. For five years I tried everything my doctors could think of. Regular spine injections. Implanted spinal cord stimulators. Infusions of drugs that could leave me hallucinating. I was quickly running out of treatment options, so at the end of 2014 I agreed to a hospital stay with an epidural to stop almost all the feeling in my legs.
Those five days were the hardest days of treatment I’d had. I saw a physical therapist at least once and sometimes twice a day. I couldn’t feel my feet hit the ground, my muscles barely worked and I was still in pain.
It was during that treatment that the physical therapist suggested that I start walking with a cane. I could use it as I waited for the epidural to wear off to keep my balance and I could use it to help keep my weight off the painful leg when it got to be too much. I used the cane on and off as the pain got better before it got worse again. Encouraged by the results of the first epidural, I gave it another go in January 2015. In February, I told my doctor I was ready to be active for the first time since my diagnosis.
I asked if he believed I could try dancing. He said if I insisted on dancing, I could try ballet. The next day, I was at the dance store buying my first pair of ballet slippers in 15 years.
I started with a ballet class for adults who had never danced before once a week. In my first class, the teacher asked us why we were dancing. My answer? Because I could walk.
Each week I felt stronger. Supported by the barre, I was less and less afraid that my body couldn’t do something, and instead I was surprised each time that I could do the movements. I knew I wanted to do more.
Tucked away in my computer browser “Favorites” was the page for adult classes at the Joffrey (one of the most famous ballet companies in the world). I had been dreaming of being active again for the entirety of my fight with CRPS and dreaming of taking a class there.
I had hesitated to start there because of their elite reputation but after six weeks of my “novice” class, I got up the guts to send them an email and ask if it was OK for someone whose legs weren’t quite right to take their adult basics classes. Their instant reply was that all were welcome in the adult classes and they recommended a teacher who was comfortable giving modifications for students.
The following Saturday, I was up early to get ready. I picked out a leotard, tights and a skirt. I pulled my hair into a proper ballerina bun and headed downtown for class. I was nervous and found a place at the barre where I believed I could melt into the background. Where I believed no one would certainly notice my funny colored leg and my lack of ballet knowledge.
It was in that sunbathed studio where I knew that I had found what I needed. When the pianist played, 35 adults started plieing in unison. We were reminded to listen to our bodies. That it was better to do something right than to pull our leg to our ears or push our feet to 180-degrees. It was OK not to jump, but it wasn’t OK to be lazy.
I introduced myself to the teacher after class and told her I was the one who had emailed. She said if I hadn’t told her who I was, she never would certainly have known. She couldn’t see that the pain was eating me alive inside when I moved. I told her the dancing was making me brave. That the music helped me move when my body was afraid. She told me to keep coming back. And to go to as lots of classes as I was comfortable with.
So I did.
I was back the next day. I took every class I could fit into my schedule. I got stronger. I stood taller. I was walking better. The pain from moving incorrectly was fading. It no longer hurt my hips and back to breathe. And I was distracted from the pain in my leg.
In the middle of the year, I took a tap class on a whim. I found I could still shuffle ball change and that tap dance was still magic.
I had two more 5-day epidural infusions to control the CRPS pain last year. When the last one failed, I tried more treatments and eventually replaced my spinal cord stimulator. I never stopped dancing.
Against all the odds, I’m dancing. Eight classes a week. Yes, I’m still in pain and I probably always will be. CRPS is incurable. My cane is still folded in my bag, just in case. But now, I’m a dancer and I’m standing on my own two feet.
Mary Fran Wiley is a web designer and rare disease sufferer from Chicago. She is the founder of the organization Hope.Dance, a group aimed at creating dance curriculum for sufferers of pain disorders.
No comments:
Post a Comment