By Anne Levin
In a video that debuted last November, 55 people join together on Zoom to sing the song Louis Armstrong made famous, “What a Wonderful World.” Most of them suffer from aphasia, a language disorder that often develops after a stroke or brain injury. As an introduction to the song, several of the participants talk — some more haltingly than others — about the frustrations of their condition. “Aphasia is difficulty speaking,” says one. “Makes me slow,” says another. “Aphasia is lonely.” “Aphasia is complicated.” “Aphasia is not being able to talk to my children.” And so on.
But once they begin to sing, all of the hesitancy disappears. Words so difficult to speak appear to flow effortlessly when set to music. The singers are members of the International Aphasia Choir, drawn from different aphasia choirs on five continents. They are visual and aural proof of the Hans Christian Andersen quote: “Where words fail, music speaks.”
Prominent among these choirs is the Bridgewater-based Sing Aphasia, founded by Westminster Choir College graduate Gillian Velmer during her doctoral studies in speech language pathology at Kean University. As part of her doctoral program, Velmer built a website, singaphasia.com, for aphasia choir resources. During the pandemic last year, she was approached by Trent Barrick, a music therapist in Florida. He had discovered the site, and wondered if she’d be interested in helping him put together an international aphasia choir video.
“I said yes right away. I loved the idea,” says Velmer, 34, who has a day job as a speech language pathologist in the South Plainfield Public Schools. “Aphasia can be so isolating. If you are all of a sudden not able to communicate the way you used to, it’s just devastating. And it doesn’t affect just one person. It really affects the whole family and friends and community of the person as well.”
A native of Bridgewater, Velmer has always loved to sing. At Westminster, “choir was a huge and very fulfilling part of my life,” she says. “My time there inspired me to look into the field of speech language pathology. My senior year, I had classes on anatomy and physiology of the voice, which I found so interesting.”
As a prerequisite for her master’s degree, Velmer took a course on aphasia. “That was the first time I had heard of it, or even heard the word,” she says. “But that’s not really unusual. Statistics say that less than 15 percent of Americans know about aphasia, yet nearly two million in this country are living with it. I was so fascinated by that. Somehow, doing the research and having my musical background, I thought, ‘What about music for aphasia?’ ”
Velmer made aphasia choirs around the world the topic of her master’s thesis. After earning her degree and working in public education for a few years, she returned to Kean to pursue a doctorate. “I knew I wanted to continue my research,” she says.
She began looking into the question of whether singing can help with word-finding. “Over a five-week period, we did find an improvement,” she says. “There is definitely more research needed in this area, and that’s what Sing Aphasia hopes for in the future.”
There are two primary types of aphasia – fluent, which is the most common, and non-fluent. According to the Cleveland Clinic, “Aphasia is a disorder that results from damage to areas of the brain that produce and process language. A person with aphasia can have trouble speaking, reading, writing, and understanding language. Impairment in these abilities can range from mild to very severe (nearly impossible to communicate in any form). Some people with aphasia have difficulty in only one area of communication, such as trouble putting words together into meaningful sentences, trouble reading, or difficulty understanding what others are saying. More commonly, people with aphasia are limited in more than one communication area. Nearly all patients with aphasia have word-finding difficulties – that is, coming up with the correct name of persons, places, things, or events. Each person’s experience with aphasia is unique. It depends on the location(s) of the stroke or brain injury that has caused the aphasia, extent of damage, age of the person, general health of the person, and ability to recover.”
“It’s based on where the damage is in the brain, and what kind of language difficulties people have,” says Velmer. “I have seen firsthand, in my choir, people who have only spoken two or three words in a sentence. They just can’t get it out. But they sing full phrases fluently. With social skills too, people who have been shy have really opened up in the choir.”
The mechanisms of the brain are an unending source of fascination to Velmer. “We typically think of the left side of the brain as the communication center, where language is stored,” she says. “People usually think the right side is more musical and creative. So, if someone has a brain injury on the left side, they may have aphasia. What’s amazing about music is that it taps into both sides of the brain, which is really cool.”
Music is also effective in helping people with dementia. But aphasia and dementia are very different.
“For people who have any type of dementia, music can be a wonderful way to ignite their memories,” said Velmer. “The music, and the words to a song, can come back to them. But one thing that’s important to remember about aphasia is that it’s a language disorder that occurs after a brain injury or stroke, but it doesn’t affect intellect or memory.”
In addition to rehearsals, members of the local and international choirs have been taking part in monthly meetups.
“Sing Aphasia Choir brings hope to us that the joy of singing is possible once again,” writes member Linda Schwarz of Wayne. “You want to get better, challenge the mindset. And the outcome is, no doubt about it, one of the best feelings in the world,” writes Matthew Weingartner of Long Island, New York. Chance Lee of Rainier, Washington, writes on behalf of her mother, “Sing Aphasia has begun to help my mom relearn how to speak again through singing. Dr. Gillian Velmer uses repetitive sounds and words in songs to assist in reconnecting the connections that were damaged during my mom’s hemorrhagic stroke. We remain hopeful that through singing she will be able to have a full conversation with us again soon.”
Velmer welcomes family members and caregivers to join the choir. “It’s something they can do together, something that may have been lost from the injury,” she says. “That’s important to me. And I don’t want people to think about it as therapy. I want it to be a safe, fun, supportive environment. If the words are still hard to sing, they don’t have to sing them. They can hum, or shake their bodies, just do whatever makes them feel comfortable. I hope others see how much of a difference this can make in a person’s quality of life.”
Fifty-five people join together on Zoom to sing “What a Wonderful World.” Most of them suffer from aphasia.
Since COVID-19, more aphasia choirs have been formed. “I would love for there to be a choir in every city,” says Velmer. “One silver lining of the pandemic is this growth. We are all isolating in our homes, but thank goodness for technology. I have more people consistently coming to our choir rehearsals because you don’t need to drive to get there.”
Velmer plans to return Sing Aphasia, eventually, to in-person meetings, keeping a hybrid model in place so people from all over the world can participate. She recently obtained nonprofit status for the choir. A second video is in the works. She hopes to expand the offerings of Sing Aphasia, with possible classes in music theory, the history of musical theater, and poetry that might be set to music.
“We are really excited about our growth this year,” she says. “Now that we have that 501(c)(3) nonprofit status, I know we can keep growing.”
The logo for the Sing Aphasia website shows two chirping birds, one with musical notes in a bubble above its head. “I created it. Because no matter what, the birds wake up each morning and sing a new song,” says Velmer. “That’s a powerful message for our members. They may have some struggles. But I hope that encourages them.”