A former dance professional and arts administrator, Drew Jaussaud, shares his profound journey navigating two debilitating conditions that transformed his relationship with movement. In 2020, while attending an arts conference in New York City, Jaussaud contracted an unidentified virus that drastically altered his life. Diagnosed later with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and akathisia, he experiences contrasting symptoms: one condition exacerbates with movement, while the other compels it incessantly. Despite these challenges, Jaussaud's connection to dance remains vibrant through kinesthetic empathy, enabling him to experience the art form vicariously through performances online and occasionally live.
Before 2020, Drew Jaussaud was actively engaged as the booking and touring manager for Salt Lake City’s Ririe-Woodbury Dance Company. His daily routine included managing tours, participating in open classes, and performing freelance gigs. The company had recently participated in international cultural diplomacy initiatives in Mongolia and South Korea under the U.S. Department of State's DanceMotion USA program, further enriching their artistic outreach.
In early 2020, during an arts professionals' gathering in New York City, Jaussaud fell ill with what was initially thought to be a common ailment but turned out to be something far more sinister. Over time, this mysterious illness evolved into a complex medical scenario affecting every system regulated by his nervous system. Vision issues, digestive and urinary shutdowns, and relentless sensations akin to pins and needles plagued his existence. Sleep became elusive, often disappearing for several days at a stretch, accompanied by hallucinations that distorted reality.
After extensive testing for various neurological conditions such as multiple sclerosis, Parkinson’s disease, and Charcot-Marie-Tooth disease, Jaussaud received dual diagnoses: ME/CFS and akathisia. ME/CFS severely impairs his ability to function normally, characterized by post-exertional malaise where any physical activity worsens his condition. Akathisia, on the other hand, forces involuntary movements that are either excessive or rigid, creating an internal torment that makes stillness impossible.
Despite these adversities, Jaussaud finds solace and inspiration through digital platforms like Instagram and YouTube. Through kinesthetic empathy, he connects deeply with dancers worldwide, experiencing their movements emotionally and viscerally. This phenomenon allows him to transcend physical limitations, keeping his spirit alive and reminding him of the universal language of dance that transcends bodily constraints.
Beyond the confines of his bed, Jaussaud continues to dream and engage with the world of dance. His story exemplifies resilience and adaptability, proving that even when the body falters, the soul’s connection to movement persists. Through watching others perform, he participates in the joy and expression of dance, affirming its power to inspire and connect beyond physical capability.