When dancers hear the term “movement disorder,” they might think it’s the title of an edgy new contemporary work; but to someone with a failing nervous system like me, it’s a medical condition that turns your vessel for dancing into a prison cell.
Prior to his current illnesses, Drew Jaussaud was a dancer who worked in arts administration. Photo by Damon Kirchmeir, courtesy Jaussaud.
Back in 2018 and 2019, I was working as the booking and touring manager for Salt Lake City’s Ririe-Woodbury Dance Company, taking open classes, and performing pickup gigs. The company had recently conducted arts diplomacy abroad for the U.S. Department of State in Mongolia and South Korea with DanceMotion USA and toured through France performing the masterworks of Alwin Nikolais.
But in 2020, my dance and arts administration career came to a screeching halt when I became sick with a then-unknown virus while at the Association of Performing Arts Professionals conference in New York City. I fell ill and never got better.
Over time, every system regulated by my body’s nervous system, which is all of them, started to malfunction. My vision blurred, my digestive and urinary systems shut down, and my body was overtaken by relentless sensations of pins and needles. Sleep abandoned me—I would go four or more days without rest at a time. Hallucinations crept in; I saw and heard things that weren’t there.
My physicians tested me for multiple sclerosis, Parkinson’s disease, and Charcot-Marie-Tooth disease, among a myriad of other conditions. I continued to deteriorate until I was finally given a pair of diagnoses: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and a movement disorder called akathisia.
ME/CFS is a complex, multisystem illness that stole my ability to wake up feeling rested, think clearly, or endure the sounds and lights I once danced under. The more I move, the worse I feel—a cruel paradox for a dancer. This is known as post-exertional malaise (PEM), and it’s a hallmark of the disorder.
At the same time, my akathisia causes involuntary movements that are either repetitive and excessive or slow and rigid. It is not just a compulsion to move—it is an unrelenting internal torment, a psychological storm of terror and doom that accompanies the constant desire to move.
I have one condition that is worsened by movement and one that makes it impossible to stop moving. One that demands stillness and another that forces movement. The war between them never stops. Lamentably, both conditions are very hard to diagnose, treat, and live with, and I try to stay optimistic with the help of a few prescription medications and talk therapy.
As a former dancer once fueled by movement and the joy it brought to my life, I now spend most of my days bed- or housebound, wearing earplugs and an eye mask to shield myself from the very world I once thrived in.
And yet, I still dream of dancing.
Most days, I cannot tolerate much screen time, but when I can, I turn to Instagram, to YouTube, to any space where dance lives. On very rare occasions I can leave my bed to enjoy a live performance. When I watch dancers take flight, I feel it in my own body. This is kinesthetic empathy—the ability to experience movement emotionally and viscerally just by watching, a phenomenon supported by scientific evidence. It’s why we flinch when we see a skateboarder fall, why we hold our breath when a ballerina hovers in midair. It’s why dance, as an art form, has always transcended words. Right now, I really enjoy recordings of commercial choreography, narrative ballets, contemporary works, and cultural dance forms like bharatanatyam.
Even now, confined to my bed, kinesthetic empathy allows me to connect with movement. My body may be still (or moving against my will), but dance still reaches me. It sets my soul on fire and reminds me that movement is more than the physical—it is feeling, it is storytelling, it is connection. It is life itself.
Though my body betrays me, movement still calls to me. And through the dancers I watch, I can still answer.
