When dancers hear the time period “motion dysfunction,” they could suppose it’s the title of an edgy new up to date work; however to somebody with a failing nervous system like me, it’s a medical situation that turns your vessel for dancing into a jail cell.
Again in 2018 and 2019, I used to be working because the reserving and touring supervisor for Salt Lake Metropolis’s Ririe-Woodbury Dance Firm, taking open courses, and performing pickup gigs. The corporate had lately performed arts diplomacy overseas for the U.S. Division of State in Mongolia and South Korea with DanceMotion USA and toured via France performing the masterworks of Alwin Nikolais.
However in 2020, my dance and humanities administration profession got here to a screeching halt once I turned sick with a then-unknown virus whereas on the Affiliation of Performing Arts Professionals convention in New York Metropolis. I fell sick and by no means obtained higher.
Over time, each system regulated by my physique’s nervous system, which is all of them, began to malfunction. My imaginative and prescient blurred, my digestive and urinary programs shut down, and my physique was overtaken by relentless sensations of pins and needles. Sleep deserted me—I’d go 4 or extra days with out relaxation at a time. Hallucinations crept in; I noticed and heard issues that weren’t there.
My physicians examined me for a number of sclerosis, Parkinson’s illness, and Charcot-Marie-Tooth illness, amongst a myriad of different circumstances. I continued to deteriorate till I used to be lastly given a pair of diagnoses: myalgic encephalomyelitis/power fatigue syndrome (ME/CFS) and a motion dysfunction known as akathisia.
ME/CFS is a posh, multisystem sickness that stole my means to get up feeling rested, suppose clearly, or endure the sounds and lights I as soon as danced beneath. The extra I transfer, the more severe I really feel—a merciless paradox for a dancer. This is called post-exertional malaise (PEM), and it’s a trademark of the dysfunction.
On the similar time, my akathisia causes involuntary actions which can be both repetitive and extreme or gradual and inflexible. It isn’t only a compulsion to maneuver—it’s an unrelenting inner torment, a psychological storm of terror and doom that accompanies the fixed want to maneuver.
I’ve one situation that’s worsened by motion and one which makes it unattainable to cease transferring. One which calls for stillness and one other that forces motion. The conflict between them by no means stops. Lamentably, each circumstances are very laborious to diagnose, deal with, and reside with, and I attempt to keep optimistic with the assistance of some prescription drugs and speak remedy.
As a former dancer as soon as fueled by motion and the enjoyment it delivered to my life, I now spend most of my days bed- or housebound, carrying earplugs and a watch masks to defend myself from the very world I as soon as thrived in.
And but, I nonetheless dream of dancing.
Most days, I can not tolerate a lot display screen time, however once I can, I flip to Instagram, to YouTube, to any area the place dance lives. On very uncommon events I can go away my mattress to get pleasure from a reside efficiency. After I watch dancers take flight, I really feel it in my very own physique. That is kinesthetic empathy—the power to expertise motion emotionally and viscerally simply by watching, a phenomenon supported by scientific proof. It’s why we flinch once we see a skateboarder fall, why we maintain our breath when a ballerina hovers in midair. It’s why dance, as an artwork type, has all the time transcended phrases. Proper now, I actually get pleasure from recordings of economic choreography, narrative ballets, up to date works, and cultural dance varieties like bharatanatyam.
Even now, confined to my mattress, kinesthetic empathy permits me to attach with motion. My physique could also be nonetheless (or transferring in opposition to my will), however dance nonetheless reaches me. It units my soul on hearth and jogs my memory that motion is greater than the bodily—it’s feeling, it’s storytelling, it’s connection. It’s life itself.
Although my physique betrays me, motion nonetheless calls to me. And thru the dancers I watch, I can nonetheless reply.
