Most people communicate through speech. But speaking is impossible for those with advanced amyotrophic lateral sclerosis (ALS).
The disease, which affects 20,000 Americans, causes a degeneration of motor neurons and a progressive loss of muscle control.
In January 2014, Andrea Caban met Terry Fiset, a retired attorney turned theater director. Fiset told Caban that she was having trouble talking. She wanted help from Caban, a voice, speech and accent therapist and the head of Voice and Speech in the Department of Theatre Arts at Cal State Long Beach.
Caban suggested changes in Fiset’s posture, breathing and articulation. These adjustments helped at first, but Fiset soon learned the reason for her struggles; she had ALS. After Fiset’s diagnosis, Caban began learning about the disease.
“The standard practice was not to do anything about patients’ vocal challenges,” Caban said. “But I intuited a modified accent for Terry to use with her weakening muscles. It was very different from her original voice, so we called it ‘Voice 2’.”
An actress and award-winning playwright, Caban said she felt connected to Fiset and was inspired to share her story. With Fiset’s permission, she recorded their therapy sessions and crafted a script.
The result was “The Voice Bank,” a one-woman show about the highs and lows of Fiset’s journey. With Caban playing both patient and therapist, the production came to life in October 2015 at CSULB.
After the CSULB debut, Caban took “The Voice Bank” to Penn State, UC Irvine and UC Santa Cruz. The show was selected for the Chicago’s Greenhouse Theater Solo Celebration in August 2016.
ALS patients and their loved ones were moved by the realism of the presentation. The sister of an ALS patient, Terry Koenig, was particularly struck by the show. She sent the ALS Association a statement about Caban’s work.
“’The Voice Bank’s" parallels to what we were experiencing in real life with Mary were just incredible,” Koenig wrote. “Andrea captures the loss of movement, the anguish and irony of the countless clinics and doctor’s appointments as well as the wide range of emotions that those afflicted with ALS and their families encounter.”
Koenig said the ALS community would benefit from another staging and a livestream presentation. She was instrumental in spearheading a revival.
“The Voice Bank” will return to Long Beach for a special performance. Presented by CSULB and the ALS Association Golden West Chapter, the show will open at 2 p.m. Sunday, Dec. 10, in the Studio Theatre. It will be followed by a question and answer session with Caban and ALS experts.
The entire event will be recorded and made available at http://alsagoldenwest.org, so that people around the world can share in the experience.
Asher Garfinkel, vice president of community outreach for the ALS Association Golden West Chapter, said, “We have heard from people living with ALS and their circles of support who have watched a performance of ‘The Voice Bank’, and the majority agree that it presents an honest portrayal of life with this disease, including but not limited to the devastation, limitations, fear, anger, grief and the inspiration to fight back.”
“With a lesser-known disease like ALS, awareness is everything,” Garfinkel said. “Awareness inspires people to share more stories, advocate and raise funds.”
The proceeds from the Dec. 10 show will support ALS research. To purchase tickets or make a donation, go to http://calrep.org.