Learning to Dance in the Rain of Chronic Illness

When I was in high school, college and beyond I loved to dance. Anywhere, anytime. Give me a decent beat and the smallest of spaces and you would have found me at the very least doing a little jig. Give me a dance floor and I was in my element. The rhythm of the music carried me away to my happy place.

Then came myalgic encephalomyelitis (ME). It brought my dancing to a halt. ME is a multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. Every day with ME comes with sheer exhaustion, pain, cognitive challenges and more.  How can someone possibly dance with all that going on?

I’ll admit that at first there was no dancing of any sorts. I even stopped listening to music altogether. I was too tired to sing along, let alone bop to the beat of the music. The sound of the music, no matter how low the volume, affected my new noise sensitivities. Playing the radio in the background even provided too much stimulation to my already overstimulated self. In short, the music had stopped and with it so had the dancing.

I’m now almost three years in with ME. I have lived for three years in pain, exhaustion and with cognitive issues and so much more. It still wreaks havoc on my life on a daily basis, but I’ve decided to accept it as my new norm. It’s going to be there and while I have several strategies to minimize the impact of ME, they are not foolproof and there’s no real reprieve from ME ever. And that I accept. So now what?

So now I learn to dance amongst all that ME rains down on me. Because I love to dance. And I’ve really missed dancing. But how do I do this? How do I dance when I can’t get off the couch? Or when a simple walk to the mailbox has triggered a flare-up? How do I dance when I have so many limitations? How? It’s actually quite simple: I refuse to stop dancing. As my parents will attest to, when I set my mind to something I won’t quit. “I am the boss of me,” I often declared as a little girl (much to my parent’s “delight”). And I am still the boss of me, and I say, dancing stays!

So, I pulled myself together and decided that I must discover new ways to find joy and happiness in my life. The kind of joy and happiness that I found rocking out to a new song. In short, I needed to find some new styles of dance. Styles that let my creative energy flow, that released the stress of the day, and made me feel a little silly at times too, just like dancing did for me.

Here’s the what I did: I started journaling about this incredibly (not fun!) life-changing journey of having a chronic illness. Through doing this, I found that writing was amazingly therapeutic, getting my articles published was a cool new “high,” and that my articles also resonated with my fellow ME warriors and brought them comfort and hope. Mental happy dance!

I also started meditating. With all my time on the couch, I found myself bored while at the same time my mind was racing with all these things I wanted to do, all these goals I had yet to achieve. Getting upset about how ME was impacting my ability to achieve them was not doing me any good so I decided I needed to slow my brain down. So, I meditated. And then meditated some more because I wasn’t very good at it. I am a lover of physical challenges and hardcore workouts, not someone who lays there and focuses on my breathing. But I persisted and I eventually caught on to it. It actually does work if you keep practicing. Once I slowed my brain down, I was able to focus on what really mattered to me.I then prioritized – I threw out the goals that really didn’t matter any more and decided to put what little energy I had into the ones that did, including some new ones. And then I used my newfound focus to find a way to  still achieve them. Sometimes getting quite creative was a must. Thankfully, there’s so much you can do from a laptop while laying on the couch. Shortly, as goal after goal, big and small, came to fruition, I danced! And I danced some more!

Will my dancing days ever end? Maybe someday but not for a long time. My ME may very likely continue to progress, but I am up for the challenge. I have now learned that there are endless ways to dance in the rain of chronic illnesses and I am determined to find them, for I am the boss of me. ME is not the boss of me.

My wise grandmother at 100 years of age once told me to keep living it up while you can because when you no longer can you will be able to think back on those moments and a smile will come to your face as you remember them. When I look up to the heavens, I know my grandma is smiling down at me because I have found a way to keep dancing.