I remember when I was diagnosed with fibromyalgia, it was presented to me as good news. It was not autoimmune, it would not kill me, it did not have a cure, but if I exercised I should be fine. It was a roller coaster getting there, but I was relieved. In that moment, there was no way I could have anticipated just how much it would come to dominate my life.
The trickiest part for me is that fibromyalgia has no obviously visible symptoms. I try to pretend I don’t have it both as a coping mechanism and out of sheer pride, and my friends tend to follow my lead. As strange as this may sound, I’ve become so accustomed to it that I don’t remember what life without fibro is like.
However, as it has been getting worse over the years, I’ve started noticing that I really am different. Excessive air conditioning doesn’t bring chills but pain, running is out of the question, short-term memory is never a given, carb intake matters, and then the constant, never-ceasing rationing of daily energy…going for a morning walk affects the rest of the day, and even something as careless as staying up too late can lead to weeks of consequences. I stay in more nights than I used to, continually ask for extensions, and sometimes just cancel everything for the sake of a nap.
In an achievement-driven society, there is less and less room for mere survival and being. We do, but being is not among what we do. It’s not something concrete enough to pencil in our calendars, and it’s certainly too abstract to list on our resumes. As much as I want to be able to do more and meet this standard, that has not been an option these last few years. I still can’t honestly say I don’t envy more abled people, but I can say I am grateful for what my disability has enabled me to learn.
As my health began to worsen, I had to re-prioritize and give up my high school activity-driven mentality. I was sad to see dance go with it, but I could not imagine devoting even a couple hours a week and knew my body would never cooperate with me to move as gracefully as it should. Three years later, though, I find myself dancing more than I ever had before, enough to hope that my professors never find out the ratio between hours dancing and hours working on thesis per week. For this, I blame my much beloved roommate. She saw me hit a mental wall one night sophomore year: I was overwhelmed by all I had to do but discouraged by how little energy I had to do it. I didn’t want to keep dwelling on why this was fibro’s fault and talk about how life was unfair; I just wanted to feel able and useful again and find something bigger than my limitations, which is why I agreed when she mentioned salsa night.
As graceful and friendly as dancing is, that night it became my weapon of choice in this war I knew I could not yet surrender. Exercise was my only treatment option, but unlike most exercise, dancing did not leave me sore for weeks.
More than that, though, dance has become a tangible analogy for my intangible faith. The effort it takes to keep going some days is more than I want to deal with, and at twenty-two I often feel forty years too young for the way my body is acting. Through the lens of consumerism and ambition, my body does not work well, and I find myself often joking that I want a refund. With dancing, though, this thing that seems like junk can suddenly make something beautiful. Just as God makes something miraculous out of my messes, dancing turns what was broken into something glorious.
After working so hard throughout the day to figure out what I can and cannot do, it is always a relief to take off my street shoes weighed down with the worries of the day and put on my dancing shoes. Stepping out onto the dance floor, I feel a rush and new sense of self. The brokenness of my body is still evident, but I shift my focus part by part: the power of my muscles to move, the strength of my bones to support me, and my mind’s ability to make them work. For a few hours, I take a break from trying to fight my body into doing things, and I simply am.
It was good and healthy to have time to mourn over the uses of my body that I’ve lost, and it’s a process that comes in waves. I do need to recognize my hurts both physical and emotional, but I refuse to let them define me by dwelling on them. Dancing has consistently been my escape from self-pity, and through it God has fulfilled His promise in Psalm 30:11: “You turned my wailing into dancing; you removed my sackcloth and clothed me with joy.” Each time I dance, I thank God for the miracle of its freedom and beauty. I am still mobile, but I fight for mobility and no longer take it for granted. It’s easy to feel entitled to activities like walking and complain when they get difficult, but being able to experience the thrills of dancing reminds me that it is all a gift. What sets dancing apart for me is that it is not just another task or activity, but rather a sacred time of day when I can go, be, and remember that I am so much more than this illness I am conquering.
The Claremont Ekklesia: Winter 2013 Issue