In January 2014, Terry Fiset, a retired attorney turned theater director, was having trouble speaking and wanted help. She met Andrea Caban, a voice, speech, and accent specialist and the head of Voice and Speech in the Department of Theatre Arts at California State University, Long Beach (CSULB).
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 more about the disease. She found that the standard practice was not to do anything about patients’ vocal challenges.
“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,’” Caban said.
An actress and award-winning playwright, Caban was inspired to share Fiset’s story. With permission, she recorded their voice and accent sessions and crafted a script. The result was “The Voice Bank,” a one-woman show that shares Fiset’s efforts to defy her diagnosis and fight for the privilege to keep speaking.
Caban plays both herself and Fiset as they work together to manage her progressing symptoms through voice and accent training. The play also shares Caban’s struggles as the practitioner helping a person facing a devastating diagnosis.
“The play is based on 40+ hours of actual transcriptions from voice and accent sessions, and real conversations between doctors and other medical professionals,” said Caban. “This play toggles back and forth between what was said and what was thought, between what was experienced and how that experience was conveyed to others.”
The production first came to life in October 2015 at CSULB. After its debut, Caban took “The Voice Bank” to Pennsylvania State University and University of California, Irvine (UCI). The show was selected for the Chicago’s Greenhouse Theater Solo Celebration in August 2016.
Many people with ALS and their loved ones expressed their appreciation to Caban for the realism of the presentation. It was following a performance at University of California, Santa Cruz (UCSC), that Terry Koenig, whose sister had ALS, sent The ALS Association a statement about Caban’s work.
“The way that ’The Voice Bank’ parallels what we were experiencing in real life was just incredible,” Koenig wrote. “It 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.”
“We are grateful to Andrea Caban and Terry Koenig for bringing this meaningful material to us and for encouraging us to share it nationwide with the ALS community,” said Asher Garfinkel, vice president of community outreach for The ALS Association Golden West Chapter. “We have heard from people living with ALS and their circles of support who have watched a performance of ‘The Voice Bank,’ and feel 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.”
On Sunday, December 10, 2017, a special benefit performance of “The Voice Bank” was presented by Edison International, and hosted by The ALS Association Golden West Chapter and CSULB’s Theatre Arts Department at The Studio Theatre.
The performance was also live streamed and is available on YouTube.
“We are excited to present the performance on YouTube for the world to see. It provides a wonderful opportunity for sharing and catharsis, while also building awareness outside of the immediate ALS community,” Garfinkel said.
Since working with Fiset, Andrea Caban has adapted actor voice and accent training for the supplemental care of people living with ALS to prolong the ability to speak without assistive devices. In addition to serving as the head of Voice and Speech for the Theatre Arts Department at CSULB, Caban holds a research appointment with the Department of Neurology at the UCI Medical Center.
To learn more about Caban’s solo play, “The Voice Bank,” her ALS research, or the integrative course, “The Living Speech Series,” visit www.andreacaban.com.
You can help The ALS Association and the Golden West Chapter continue to provide information, support, and services to people living with ALS, their families, and caregivers by making a tax-deductible donation. Thank you!