Journeying with ALS

MiniB Poster

We took a day off rehearsals to participate in the panel:  “Journeying with ALS: Finding Voice Through Art, Music and Technology.” This evening was the culmination of a year’s work, in collaboration with Ron Hoffman of Compassionate Care, ALS, and Lesley University, bringing together disparate people from the worlds of opera, art, medicine, technology and those who have been touched by ALS.

Cerise moderates the ALS panel

Why is it so important to White Snake Projects to plan, organize and execute activist programs around each of its operas?  After all, we’re such a small company with very limited resources.  It takes all our bandwidth to produce one original opera a year.  As I sat listening to the panelists speak, the answer was reconfirmed, in spades, for me.  Our art is activism and activism is our art.

PermaDeath’s protagonist, Sonny is diagnosed with ALS. One of her signature arias is “God Lies Dead In This Room,” where she struggles to come to terms with her body- life – god’s betrayal of her by striking her down in the prime of life. The room was silent, moved to tears by the aria and Maggie Finnegan‘s voice soaring over the pain in the room. For we had just heard a different voice, the computer voice of Steve Saling, a courageous individual living with ALS, who spoke to us through his computer. Steve’s eloquence, courage and willingness to share his innermost thoughts and feelings blew us away.

The juxtaposition of these two voices—one lifted through music and one through technology—speaking the same language made me understand this fundamental precept—White Snake Projects’ work is powerful because it combines the clarifying fire of art and mythology with the gritty, painful testimonials of real-life individuals who refuse to give in and whose voices must be lifted up.

We need to continue to innovate in the community in order to innovate in the rarefied world of the stage.

Steve Saling

You can see more photos of the panel on our Facebook page.

Photos by Kathy Wittman

Related Reading

PermaDeath—Boston 2018