When doctors told her they would have to remove her tongue and voice box to save her life from the cancer that had infected her mouth, Sonya Sotinskaya sat down with a microphone to record the words she would never be able to say again.
“Happy Birthday” and “I'm Proud of You” topped the lines she prepared for her husband and two daughters, as well as “I'll Be With You,” intended for clients of the architecture firm she co-owns in Tucson, Arizona.
While thinking about the grandchildren she desperately hoped to one day see into the world, she also recorded herself reading more than a dozen children's books, from the Eloise series to Dr. Seuss, so she could play for them one day before bed.
But one of the largest categories of audio files she stored was a string of curse words and obscene remarks. If the voice is the main expression of personality, then for Sotinsky sarcasm and profanity are essential.
“When you can't use your voice, it's very, very frustrating. Other people project what they think is your personality. I was silently screaming and screaming that there was no screaming,” Sotinski said recently, referring to basic voice technology or handwriting notes before she accidentally stumbled upon a modern workaround. – What is literally “you-know-what?”
Battling invasive oral cancer at age 51 made Sotinsky realize the existential importance of the human voice. Her unique intonation, rhythm and slight New Jersey accent were, in her opinion, imprints of her personality. And she refused to remain silent.
Although her doctors and insurance company saved her life, they showed little interest in preserving her voice, she said. So she decided to do her own research and identify an artificial intelligence company that could do it. He used recordings of her natural voice that Sotinsky had saved to create an exact replica that is now stored in an app on her phone, allowing her to once again type and speak with a full range of emotion and sarcasm.
“She got her sass back,” said Sotinsky's daughter, Ela Fuentevilla, 23. “When we heard her AI voice, we all cried – my sister, my father and me. It's crazy similar.”
“Your voice is your personality”
It took doctors about a year to discover Sotinsky's cancer. She repeatedly complained to her orthodontist and dentist about pain in her jaw and a strange sensation under her tongue. Then, as she drank, water began to drip down her chin. When the pain became so severe that she could no longer speak at the end of each day, Sotinski insisted that her orthodontist take a closer look.
“A shadow fell over his face. I saw it when he leaned back,” she said, “that look you don't want to see.”
That's when she started recording. In the five weeks between diagnosis and surgery to remove her entire tongue and larynx (medically speaking, a total glossectomy and laryngectomy), she retained as much of her voice as she could.
“Your voice is your personality,” said Sue Yomradiation oncologist at the University of California, San Francisco, where Sotinsky was treated. “Communication is not only how we express ourselves and relate to other people, but also how we understand the world.”
“When the voice is no longer available, you can’t hear your thoughts out loud, you can’t hear yourself communicating with other people,” Yom said. “It affects the way your mind works.”
She added that people who have lost their voice box are in higher risk of long-term emotional distressdepression and physical pain compared with those who persist after cancer treatment. Next to the third will lose his jobAnd social isolation may be deep.
Most laryngectomy patients learn speak again using the electric larynxa small battery-powered box pressed to the throat and emitting a monotonous mechanical voice. But Sotinski knew that without a language capable of forming words, this would not help her.
When Sotinski had surgery in January 2022, AI voices were still in their infancy. The best technology she could find made it possible to create a synthetic version of her voice, but it was still flat and robotic, and people struggled to understand her.
She lived until mid-2024 when she read about tech companies using generative artificial intelligence to replicate the full range of natural human movements and emotions.
While companies can now recreate a person's voice from clips of old home movies or even a one-minute voice message, 30 minutes is optimal.
Sotinsky spent hours reading children's books aloud.
“Eloise saved my vote,” Sotinsky said.
Now she types what she wants to say into the text-to-speech app on her phone. called Whisperwhich translates and broadcasts her artificial intelligence voice through portable speakers.
Most doctors and speech therapists who work with head and neck cancer patients don't realize that artificial intelligence software can be used in this way, and because they're focused on saving lives, they often don't have the bandwidth to encourage patients to record their voices before they lose them during surgery, Yom said.
Health insurance companies also favor treatments that prolong life over those that improve quality of life, and typically avoid covering new technologies until data supports their actuarial value.
Sotinski and her daughter spent months arguing with claims adjusters in Blue Cross, Arizona Blue Shieldbut the insurance company refused to reimburse Sotinski for the $3,000 she spent on initial assistive speech technology.
“Apparently, having a voice is not considered a medical necessity,” Sotinsky joked, her AI voice dripping with sarcasm.
Sotinski now pays a $99 monthly fee for his AI voice clone out of his own pocket.
“While health insurance plans cover both routine and life-saving care, assistive communication devices are typically not covered,” he said. Teresa Josephrepresentative of Blue Cross Blue Shield of Arizona. “As AI provides opportunities to influence health, we believe coverage criteria will change at the national level.”
Research may lead to insurance coverage
Sotinski decided to use her newfound voice to help others reclaim theirs. She took a break from working in architecture and created a website detailing her path to voice banking. voicebanknow.com. She tells her story at conferences and webinars, including a cancer conference in Denver that Yom organized for 80 scientists.
One doctor who took part Jennifer from Saintswas so inspired by Sotinsky's voice that she began laying the groundwork for clinical trials of the effects of artificial intelligence technology on communication and quality of life for patients. These types of studies can provide insurers with the data they need to measure actuarial value — “and therefore justify coverage,” said De Los Santos, a head and neck cancer researcher and professor at Washington University in St. Louis.
Breast cancer survivors faced similar struggles in the 1980s and '90s, she said. Insurers initially refused to cover breast reconstruction after a mastectomy, calling the procedure cosmetic and unnecessary.
Before the federal government took years of patient advocacy and carefully curated data showing that reconstruction had a profound impact on women's physical and emotional well-being. compulsory insurance coverage in 1998.
Both De Los Santos and Yom said data from research on voice artificial intelligence clones will likely follow a similar path, ultimately proving that a fully functioning, natural-sounding voice can lead to not only a better life, but a longer one.
In recent months, Sotinskaya's artificial voice literally helped save her life. The cancer has again attacked the lungs and liver. Her voice allowed her to communicate with doctors and fully participate in the development of a treatment plan. It showed her how “medically necessary” it is to have a voice.
She noticed that doctors and nurses began to take her more seriously. They didn't tune out like people often did when she relied on her more robotic, synthesized voice. They seemed to see her as more human.
“If someone can communicate using only a few words at a time, rather than developing and interacting more fully, it's natural that you might not detect that they have a deeper thought,” she said. “It’s vital to be able to have a more seamless dialogue with my care team.”
While doctors successfully treated her late-stage cancer, Sotinski, now 55, said she has a new appreciation for her chances as she faces the reality that she will likely die much earlier than she would like.
She realized again how important her voice was to maintaining her outlook on life and sense of humor in the face of death.
“I tend to forget and think I'm fine when in reality I'm forever. Emotionally you start getting cocky again and it was like, Whoa, bitch, we're not playing. This cancer is real— Sotinskaya said, typing another phrase with a mischievous grin.
“Sarcasm is part of my love language.”
This article was created as a partnership with KKED And NPR.
