Dan Visconti and Cerise Jacobs’s Video Game Opera, PermaDeath, Joins Conversation about ALS, Partnering with Compassionate Care ALS

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ALS addressed in video-game opera “PermaDeath,” presented by White Snake Projects

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). Though still able to stand under her own power, she has begun using a wheelchair. 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 though 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.”

CCALS is a non-profit organization with a mission to support and enhance 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 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. Hoffman also proved very enthusiastic about the opera. As he says:

“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.”

On one level, then, 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.

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.

Jacobs’s previous productions have been hits with critics and audiences alike. REV. 23 was declared by La Scena Musicale to be “a privileged, early glimpse of the Apocalypse – and beyond – courtesy of resident visionary, opera-maker, and eschatologist nonpareil, Cerise Lim Jacobs,” whose “literary and imaginative feracities are prodigious.” Classical Voice North America praised composer Julian Wachner’s “endlessly creative score.” The Boston Musical Intelligencer left no doubt about the audience’s reaction: “An eccentric vision of a world before the Beginning, REV. 23 received an eager standing ovation from an ecstatic audience.”

To purchase tickets for the world premiere of PermaDeath at Boston’s Emerson Cutler Majestic Theatre, September 27-29, click here.


Cerise Jacobs: PermaDeath world premiere and associated events

Sep 4-16
Cambridge, MA
Lesley University College of Art and Design
Raizes Art Gallery in the Lunder Arts Building
Art exhibit featuring paintings of Jon Imber
Curated by Andrew Mroczek

Sep 13
Cambridge, MA
Panel discussion with participants to include:
Ron Hoffman, founder and Executive Director, Compassionate Care ALS
Dr. James Berry, Co-Director, Massachusetts General ALS Multidisciplinary Clinic
Steve Saling, architect
Jill Hoy, artist and widow of Jon Imber
Wine reception following, hosted by Lesley University College of Art and Design

Sep 27-29
Boston, MA
Emerson Cutler Majestic Theatre

Sonny: Rachele Gilmore
Apollo: Josh Quinn
Artemis: Amy Shoremount-Obra
MiniB: Patrick Dailey
Adonis: Sarah Coit
Niobe: Stephen Carroll
Marsyas: Christopher Carbin
Aphrodite: Shirin Eskandani

Creative team:
Composer: Dan Visconti
Creator and Librettist: Cerise Lim Jacobs
Co-Librettist: Pirate Epstein
Conductor: Daniela Candillari
Dramaturg: Cori Ellison
Transmedia Consultant: Magda Romanska
Music Supervisor: Joshua Jandreau

Director: Sam Helfrich
Costume and Set Designer: Zane Pihlstrom
Digital Content Designer: Curvin Huber
Sound Designer: Mathew Solomon
Lighting Designer: Derek Van Heel
Video Designer: Kathy Wittman
Director of Preproduction and Animation: Catriona Baker

Executive Producer: White Snake Projects
Associate Producer: Jessica Ernst

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© 21C Media Group, June 2018