Composer Dan Visconti and creator-librettist Cerise Jacobs’s video game opera, PermaDeath, is a groundbreaking work containing an intricate web of theater, music, and cutting-edge technology. But the elaborate technical aspects of the piece are all in the service of a story about one central human character: a gaming enthusiast named Sonny, who is grappling with the pain and motor control loss of the early stages of Amyotrophic Lateral Sclerosis (ALS).

As Jacobs describes her development of the character: “Most of my stories explore the difference between gods and humans – mortality – and the heroism of ordinary people facing death. While we all walk in the valley of the shadow of death, ALS’s death sentence is especially poignant and highlights our confrontation of the schism between body and soul. I don't have any personal history with ALS, but I was aware of the disease through the lives of public figures, like Lou Gehrig and Stephen Hawking. One of my goals is for my stories to be impactful outside the rarefied world of opera, so it was natural for me to reach out to the ALS community to listen and learn. I sought out Ron Hoffman, the founder and Executive Director of Compassionate Care ALS. Ron has been an invaluable resource, both to educate me about the disease and to ensure that its onstage presentation as a part of the reality of my character, Sonny, is both compassionate and accurate."

On one level, ALS provides a perfect context for telling the story of PermaDeath. But gaming itself has a certain metaphorical value in understanding the experience of the disease. Gamers are part of a worldwide community, as involuntarily are ALS sufferers, yet in both cases, it’s easy to be physically isolated, which is just what makes Hoffman’s work so critical to the ALS equation. In PermaDeath the advocate character is one who ironically exists only in the electronic world: Sonny’s avatar Apollo. He proves to have a mind of his own, and altruistically encourages Sonny to make a high-stakes decision: to enter a “Tournament of Death” for a $3 million prize that would allow her to pay for increasingly needed care, but which risks “permadeath” for him. If they lose she will never be able to use him again, sacrificing one of her closest companions.

Hoffman also proved very enthusiastic about the opera. He said: “I think it’s imperative to tell stories, and what I love about Cerise’s is that it shows someone living life with ALS. Many people understandably go inward, become armored, shut down, and resistant. Yet others will follow their passion and not let the disease define them. That’s not to deny the reality of a fatal diagnosis, but there’s a will to continue to live life in whatever way is possible. A lot of my work is around confronting end-of-life issues, but the other piece of that is the quality of the life you’re living. The opera, from the title on, is not afraid to talk about life and death, both of which are brought into stark relief by ALS.”

Working with Hoffman, Jacobs has explored ways in which White Snake Projects, through PermaDeath, can join the ALS conversation, including a panel discussion on September 13 hosted by Lesley University College of Art and Design that focuses on vital work being done across the spectrum of the disease. In addition to Hoffman, planned participants include Dr. James Berry, co-director of the ALS Multidisciplinary Clinic at Massachusetts General; Steve Saling, an architect with ALS who designed the Saling ALS Residence in the Leonard Florence Center for Living in Chelsea, Massachusetts, as well as an electronic automation system that uses a wireless signal to allow Saling and other patients to open and close doors, call an elevator, and operate the TV and lights with small movements of their eyes, or even brain waves; and Jill Hoy, a well-known Maine landscape artist who was also caregiver for her husband, Jon Imber. Imber, a revered American painter collected by museums all over the country, spent the last two years of his life with ALS before dying in 2014. Despite the progress of the disease, he found strategies for continuing to paint, first switching to his left hand, then attaching a brush to one of his left fingers, and even experimenting with a brush attached to a metal brace on his forehead. He is the subject of Richard Kane’s feature-length documentary Imber’s Left Hand, released in 2014. Also planned in conjunction with the panel discussion is an art exhibit of works by artists in the Lesley community who have been touched by disability, to be anchored by some of Imber’s paintings that Hoy has agreed to loan for the occasion. Curated by Andrew Mroczek, the exhibit will be at the Raizes Art Gallery in the Lunder Arts Building, Lesley University College of Art and Design (Sep 4-16).
 
Jacobs – hailed by Opera magazine as “intrepid and artistically ambitious” – is also the Executive Producer of White Snake Projects, and, as exemplified by PermaDeath, the mission of that producing arm has evolved in two directions: the production of original operas with the highest possible production values, and social activism. Last season’s REV. 23 was conceived by Jacobs as a comic addition to the decidedly un-comic Book of Revelation, but the serious conversation behind it was about ecumenical religion. PermaDeath, by having as its central character a female gamer who is a wheelchair user, addresses broader issues of accessibility, representation, and inclusion.

CCALS is a non-profit organization with a mission to support and enhance the quality of life for people diagnosed with ALS, their families and communities as they navigate the complexities, both physical and emotional, associated with the disease. When invited, it assists in the exploration of the end of life. The organization provides a myriad of resources including equipment often not covered by insurance, educational workshops, Medicare/Medicaid assistance, augmentative communication support, accessibility evaluation, and caregiving tips, in addition to bringing guidance and awareness about living with ALS.

To purchase tickets for the world premiere of PermaDeath at Boston’s Cutler Majestic Theater, September 27-29, visit the White Snake Projects website.