Michelle Galetti had good reason to leave college. She chose to stay.
Michelle Galetti (TAM’20) was about halfway into a three-week backpacking trip in Washington State when it happened. Hiking down a mountainside in a heavy rain, just below the tree line, her hearing cut out.
“All of a sudden, the raindrops — I couldn’t hear them anymore,” she said of the summer 2018 episode, shortly before the start of her junior year at CU Boulder.
A stream rushed along nearby, totally silent to her.
“I started stomping on sticks to see if I could hear them break,” said Michelle.
“I couldn’t hear myself breathe.”
She could not. “I couldn’t hear myself breathe,” she said.
In the weeks ahead, her hearing came and went, typically for periods of 30 to 60 minutes. Eventually it was happening daily. She developed vertigo. Doctors at home in Seattle offered theories, but could not explain it or fix it.
Michelle returned to Boulder, where she continued consulting doctors. She didn’t know when things might get better. One September morning they got much worse.
She was getting ready for the day in her off-campus apartment when, at 7:45 a.m., the sound went out and didn’t come back.
The technology, arts and media (TAM) major and teaching assistant was scheduled to lead a web-design lab at 9:30.
“She said, ‘I guess I'll go to class and just do this,’” said her mother, Beth Galetti, who was visiting.
Michelle addressed the students. “Face me,” she said.
She would try to read lips.
Michelle briefly considered leaving school, but she chose to stay. Otherwise, “It would have given me too much time to think about what I’d lost, and not enough time to figure out what I can still do,” she said. “Which I’m finding out every day is still a lot.”
With the help of her mother and stepfather, Jeff VanLaningham, who, taking turns, spent months in Boulder helping her adjust, Michelle embarked on a new life.
She replaced her alarm clock with a device called “the sonic bomb” that woke her by vibrating her mattress. She identified friends and, eventually, professional captioners, who could supplement her class notes, in case she’d missed something. She and her CU equestrian teammates devised a series of hand signals so she could get commands during competitions. And she began intensive lip-reading and vocalization exercises.
Without constant sonic feedback, humans’ ability to speak devolves quickly. Michelle spent hours a day with her hand pressed to her mother’s throat, feeling and mimicking the vibrations unique to each word as her mother spoke them.
“It took a little while for me to get comfortable speaking in class,” Michelle said. “A lot of people didn’t understand why I spoke with my hand on my throat.”
There have been frustrations, indignities and fears. Lip-reading is exhausting in the best circumstances; when fellow students mumble during group presentations, it’s impossible. Airline employees, unaware Michelle can’t hear announcements, scold her for boarding with the wrong group. In the absence of sound, darkness carries a new sense of menace.
Michelle embarked on a new life.
Group conversation, with its frequent and sudden changes of speaker, is hard to follow. Michelle misses a lot of jokes.
But some inconveniences have revealed an upside. Calling from one room to another at home is pointless, for instance, so she has more face-to-face encounters with friends and family.
And many people have been reflexively supportive, including professors in CU’s ATLAS Institute who began adding closed captions to old videos and classmates who, especially in the scary early days, went out of their way to be present with her, there to help as she navigates a silent world.
And there have been unexpected moments of pleasure.
“One of her favorite things to do was to blare music in the car so that she could feel the vibrations in the speakers, and try to guess the song,” said Beth Galetti. “She was remarkably good at it.”
That first soundless semester, and the next, Michelle took a full course load. She earned a 4.0 grade point average twice.
“Anything’s possible,” she said.
Hearing trouble was not entirely new for Michelle, now 21. Since childhood, she’d been unable to detect high-frequency sounds — s, h and f sounds, for example — and she began using hearing aids regularly in high school.
But outside the high frequencies, she could hear clearly. The doctors she and her family consulted told her “there’s zero percent chance that you will ever go deaf,” she said.
After she did, new information came to light. Hearing kept her paternal grandfather out of the Air Force, and a paternal great aunt went totally deaf at 22.
Michelle’s biological father, Matt Galetti, died when she was a toddler. He’d never had reason, or perhaps time, to mention these details, if he even knew them. Michelle’s mom wasn’t aware of them until news of her hearing loss began circulating.
With the new information, the Galettis shifted their thinking away from a presumed neurological cause.
“There’s got to be something genetic,” Michelle said, “because this doesn’t just happen.”
She took a battery of genetic tests and forged ahead with her life as she awaited the results. She joined CU’s equestrian team and took part-time jobs with a technology startup. She got a puppy, a Basenji she named Kaila. She went on adventures with her boyfriend, Aaron.
Last March , after six months of total deafness, while doing homework at the home of Aaron’s family, a crackling she’d felt in her ears for 36 hours suddenly stopped. She set her pencil down. It hit the table “kind of loud,” she thought. “I’m probably just hallucinating.”
“I can live any way now. ... It’s not something I’m scared of anymore.”
She asked Aaron to clap in her ear.
“I was like, ‘Wow, not so loud!’”
He said, “Michelle, do you realize what you just said?”
It was sound, and it was a jubilant moment. But at first, everything was painfully loud, and Michelle soon realized that true hearing hadn’t really come back. She could detect sound, but not words.
“Everything still sounds like a mumble,” she said months later, “a hum.”
When the results of the genetic tests came in last summer, they revealed a mutation in a gene called ATP2B2, sometimes called a “deafness gene” for its role in some types of hearing loss.
Knowing this offered some relief, she said: “I’m not so alone in the situation anymore.” But she doesn’t expect much to come of it. There’s no associated treatment.
She’s at peace with that.
“I can live any way now,” she said, hearing or totally deaf or someplace between. “It’s not something I’m scared of anymore.”
A few months into Michelle’s ordeal, she decided she would use her remaining time at CU to develop a product that would give deaf people an experience of music.
The jacket will be fashionable as well as functional.
Working with Daniel Leithinger, a computer scientist in CU Boulder’s ATLAS Institute, she has been developing a sensor-laden jacket that will vibrate and pulse in response to sound frequencies. When a note or combination of notes sounds, sensors embedded in the jacket will vibrate in a corresponding way, providing a pattern of physical sensation.
“Hearing is really just another form of touch,” Michelle said.
The jacket — which she wants to be fashionable as well as functional, so it doesn’t mark the wearer as disabled — is a form of haptic technology, a category that usually involves blending digital and physical experience.
“Michelle has come to this project with amazing motivation,” said Leithinger, whose work at CU and, earlier, at MIT’s Media Lab, focuses on inventing new computer interfaces that let people interact with data through touching, grasping and deforming. “This was shaped by her personal experience, but also the drive to create a simple, inexpensive device for others based on open-source tools.”
With the help of a grant from CU’s undergraduate research opportunities program, Galetti stayed at CU last summer to work with him. She continues to work on it as a side project, in addition to an astonishing variety of other activities.
She’s been named an engineering fellow, a mentoring program for engineering students (TAM students are part of the engineering school). She continues her work with the startups. She rides horses. She’s been learning sign language.
The range of sound accessible to humans with standard hearing runs from about 20 hertz (a tuba, roughly) to 20,000 hertz (extreme shrillness). Galetti wants her jacket to translate the full range.
“I want to access extremes,” she said.
Photos by Glenn Asakawa