May is Lyme Disease Awareness Month, and in 2023, nearly 3,000 Mainers were diagnosed with Lyme disease according to the Maine Tracking Network. This disease is transmitted through blacklegged tick bites and, if untreated, can affect the joints, heart, and nervous system, as per the CDC.
Lewiston artist Amy Stacey Curtis has faced a long battle with symptoms her doctors attribute to untreated Lyme disease. Her struggle began in March 2017 with sudden suicidal ideation.
“I nicknamed the thing that was going on in my head ‘The Imposter’,” Curtis says, describing the intrusive and distressing thoughts that took over her mind.
Her condition deteriorated further: “Six or seven months into the psychosis, I started to lose all control of my muscles, including facial muscles, and I also lost the ability to speak.”
After consulting multiple doctors, trying various medications, staying in psychiatric hospitals, and undergoing shock therapy, Curtis was eventually referred to a naturopathic doctor.
“He said, ‘I think you have brain inflammation. It can be caused by various things, including untreated Lyme disease. We can’t treat the Lyme
disease itself because it’s no longer in your system that way. Lyme disease attacked your brain, and now you need to recover,’” Curtis recalls. “And he assured me, ‘I’m confident you can fully recover from this.’”
Through brain supplements, dietary changes, and occupational therapy, Curtis gradually regained her speech and movement. The progress was nonlinear and slow, and she longed for independence, particularly to drive again.
Intuiting that multitasking could help, Curtis took up the ukulele. “It’s really about the focus involved with doing multiple things simultaneously. Within a week of learning basic chords and songs, my speech, dystonia, and other tics had significantly improved,” she comments.
Despite her progress, Curtis’s symptoms still flare up during times of overstimulation. Patricia Mulholland, a Board-Certified Music Therapist at Be Your Note Music Therapy, observes how music has helped reconnect Curtis’ mind and body.
“When Amy sings, her speech is clear and beautiful. Singing engages multiple functions: fine motor skills, vocal expression, emotional connection. It lights up her limbic system, the brain’s emotional center,” explains Mulholland.
Encouraged by her art students, Curtis began sharing her music on TikTok in November 2021, amassing nearly 25,000 followers and over 155,000 likes. She posts new songs every Tuesday and goes live every Friday for an hour of occupational therapy.
Curtis finds TikTok to be a supportive community. “I receive comments from people with similar experiences or who know someone with dementia, stroke, or brain injury. They share how music has helped them, too.”
Mulholland echoes this, noting she has patients referred by neurologists and uses music to keep their brains stimulated and creative.
Curtis’s journey through medical trials and her efforts to regain control of her body and mind highlight the importance of self-advocacy. “Using art and music in different ways to heal my brain, intuiting what I need to do—it’s amazing to see the progress in my videos,” she remarks.
Currently, Curtis participates in a music circle every second Tuesday in Lewiston and plans to professionally release her music and a memoir documenting her story.
