I’ve caught myself praying lately. I’ve caught myself crying. I’ve caught myself holding my breath.
And it is completely unrelated to anything related to the recent presidential election.
The world hasn’t noticed that I am struggling with my legs – or that it is now two bad legs rather than just one. I’m a master at hiding it. I’ve been hiding it since I was diagnosed 6 years ago. I’ve developed a wardrobe that involves a pair of soft pants or leggings for nearly every situation – dance class, hanging out on weekends and the office. I use my cane only on the train, and then only in the mornings when the pain is the worst. I fold it up and stuff it in my bag before I make it to the front door of the office building.
Thirty two and I’m relying on a cane. I shouldn’t be surprised or disappointed. They told me CRPS is progressive and incurable. They told me I’d be lucky to keep working. They told me I’d have to fight to keep walking. I was on that path for nearly 5 years. The disease slowly ate away at me. Until I took a ballet class.
That’s the feel good story that spread across the internet. I made forward progress for nearly a year. I was stronger. Simple movements weren’t as painful. I was moving every day. But the disease was still there and I made the decision to replace my spinal cord stimulator for a fancy new one.
My dance habit convinced my doctor that I’m a bit of a loon, stubborn to a fault and not willing to give up. Nine classes a week. Ballet for putzes, tap classes from master teachers and tap improv/music theory classes. They give me feeling of absolute freedom from a rare disease that steals life away from you bit by bit. A freedom I couldn’t be more grateful for. I was also a patient the whole office knew about. Residents were dumbfounded by my ability to put dance above pain, especially because I’m a UX designer. My livelihood requires nothing more than a laptop and an internet connection. Still, I dance.
5, 6, 7….wait
I started experiencing extreme pain in my good leg in July seemingly out of nowhere and I panicked. Was I going to have to stop dancing? Was the disease going to win? Was this what they meant when they said it would spread suddenly? Could it be just a phase? Ever stubborn, I made it through a tap festival (6 hours of dancing in classes a smidge above my skill level two days in a row) fueled by determination, pain killers and arnica gel. The pain in my previously good leg was exceeding the pain in my bad leg (a huge ask when Complex Regional Pain Syndrome is one of the most painful conditions known to medicine).
I had to take a break and admit that I couldn’t fix this on my own. It was my second break from dance this year and I was crushed. A couple of PT appointments, a CT scan, three residents and two attendings later, the pain clinic confirmed that I had injured my spine in a minor fall in early July. The break from class wasn’t up to me. I went from being a warrior in control of my destiny to someone kicked in the shins my the universe.
The nerve pain has started to subside, but I’m not going to get my leg back the way it was. I’ve lost feeling and stability in my right leg and foot. I can no longer relevé on just my right foot. I can’t maintain standing on just my right toes for more than a couple counts, despite still having the strength. The signals just aren’t getting there. Every time I take a step now I am relearning how to feel the movement.
A cyborg in disrepair
I’m still chassé-ing and shuffle-ball-changing despite the setbacks of this year. I’m still going to class every day. Sheer willpower isn’t cutting it any more though. (Science says willpower is a finite resource and I’m all out). The tears found me in ballet during a stretch I had purposefully kept light to avoid triggering pain. The tears found me in an improv class when I couldn’t get my feet to hit a single sound I intended. The tears found me when someone shouted at me for standing on the escalator at the L stop because I made her miss a train (that comes every 3 minutes).
I should have expected the tears. This is hard stuff and there isn’t a manual for how to deal with fighting to maintain mobility. No one prepares you to battle to stay out of a wheelchair or to work on treatments every day so you can put on clothes. Going through the process of relearning how to feel movement doesn’t prepare you to do it again.
It was the prayers I didn’t expect. I usually joke that I’m a recovering Catholic. I pray and go to church more than most people I know, but I wouldn’t call myself devout. I find myself praying anyway. To God. To St. Jude, patron saint of impossible causes. To just about any other saint my mom suggests. I never realize that I’m doing it until after I’ve started. Tears and held breath don’t fix anything. And maybe prayers don’t either, but they can’t make it any worse.
I cry. I pray. I hold my breath. Then, I take a deep breath and remind myself that I am lucky. I can walk. That train ride I take every day is to a dream job. I’m beating the odds and I’m going to win the war. One step at a time.