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Responding to MS Through Song: A Research-Creation Project
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Date
2023
Authors
Jarvie, Jaimee
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Abstract
After receiving an earth-shattering Multiple Sclerosis diagnosis in 2019, I sought to find other musicians living with the disease who would share their stories, voices, and music with me. In May 2023 vocal ensembles JamChor, and Nerve Damage, took to the stage at the University of Lethbridge to present a collection of music that became significant in representing my version of MS. In this live performance piece, the audience experienced music by Jeff Beal, Art Alexakis, Britt Quiroz, Eric Whitacre, and The Wailin’ Jennys. Interview footage was injected between musical numbers. Singers and composers living with MS discussed diagnosis, disease-modifying drugs, disability, symptoms, and music. A supplementary file containing the full live performance is available for viewing. This performance acted as a platform for those living with a chronic autoimmune disease to speak for themselves and removed all sense of medicalization. The human voice was the central focus of the work, and each participant used their voices as advocates, teachers, and musicians. Although my story was an integral piece of this puzzle, I felt grateful to each participant for allowing me insight into their lives. Many of our conversations focused on difficult topics regarding each person’s arduous journey with Multiple Sclerosis; however, it was in discussing music that each participant agreed that singing, composing, and listening to music created a sense of catharsis and healing.