Expressing Creativity Through Music After Stroke
Music lights up the whole brain, “like the sky during a fireworks display,” said Kyle Wilhelm, MA, MTBC in the Music Therapy Services department of West Music. This seems to bring delight as the Aphasia Tones choir, the Chime Strokers and singer Toni Hickman experience firsthand.
Being Responsible for Her Gift
Survivor and singer Toni Hickman
Singer Toni Hickman has the wonderful knack of turning tragedy into good vibes. Born in New York and raised in New Orleans, Toni has been singing since she was 9. In middle school she formed a rap group with two friends and won first place in a talent show. At 22, she signed her first record deal with a group but soon after went solo.
She has also had two brain aneurysms. Complications related to the first one she experienced, in 2004, sidelined her for a while. But eventually she bounced back and started performing and was doing well again professionally.
The second aneurysm happened three years later (2007) when she was 32. It leaked and required surgery; she had a stroke on the table. “I was living in Atlanta then but was visiting in New Orleans to celebrate a new album,” she recalled. After the stroke, she spent four months in New Orleans in inpatient rehab, recovering cognitive skills and learning how to walk with a cane. “It was difficult to use my voice because it was so raspy,” she said. “I was worried that I would never sing again, and that was scary because music is my life.”
But her voice did return, and she started singing in the hospital. “What I noticed was that my vocal chords were still weak, but singing seemed to strengthen them,” she said. “And that made me happy because music is my life. I loved knowing that music could still come out of me.”
Although her speech came back within two weeks of the stroke, she still had speech therapy: “Speech therapy doesn’t just deal with your speech,” she said. “It also deals with your thought processes. I had issues with numbers — in adding and wording. My brain kind of clogged everything up, so I stayed in speech therapy for six weeks.”
She then moved back home to Atlanta where she lived with her mother a few months while she finished outpatient rehab. There she did music therapy about once a week, some of which involved singing and some that involved movement, which made her aware that the stroke had affected her rhythm as well as her voice. “The music therapy was my favorite part of the week because I could feel my vocal chords strengthening and my rhythm was improving.”
She could hear her voice get stronger, and that was very motivating. “It gave me hope that I would be able to record again. I have spent my life in the studio — that brings me joy.”
Always focused on independence — “I’ve been living on my own since I was 15” — Toni moved into her own place with her son Khalil after only a few months. “I wanted to return to my career as a singer, but in the music business, you just don’t see people with disabilities,” Toni said. “Everyone was sure my career was over, but I decided to make a way. I decided that I was going to be responsible for my gift. I didn’t have to depend on anybody except me.”
Rather than derail her music career, she found a new purpose. “In the hospital, I went through a period of depression. One day one of my nurses found me crying. I was so mad — at God, at everybody. I was having a big pity party. The nurse asked why I was crying, and I said ‘because this is my second aneurysm and now I have a stroke. What is God really doing? What is the purpose?’
“And the nurse said, ‘What you need to be asking is how come you have had two brain aneurysms and a stroke and you’re still alive? Most people die from one brain aneurysm.’
“I didn’t want to hear that right then, but looking back, that helped me to figure out my purpose, which is to shine light where there is darkness. I always spoke from my spirit, but now my perspective is different. My compassion is on a whole other level.”
She got back into the studio three months after leaving rehab — “I needed to get back in studio to prove something to myself,” she said. There she created her first solo album, “Crippled Pretty.” “I named it that because before the stroke I was a model type, commercial beautiful, but after my head was shaved for surgery, I felt ugly. It made me realize that we are all crippled trying to meet someone else’s standard. Beauty comes from the inside.”
“People Pleaser” is a single from the album, and men and women in wheelchairs have featured roles. The lyrics reflect what Toni has learned: “So go ahead and do you, and please don’t be a people pleaser.”
Toni lives in Houston now but performs all over the country, including the YoungStroke conference in June 2015. Concerts require more energy than studio work. “I have to practice more for stage performances because I run out of breath,” she said. “Sometimes I stumble because of drop foot. And I use a microphone stand because my right arm is weaker, and I would rather use my energy to perform than hold a mike.
Toni speaks at the Taste of Soul event for the Houston affiliate of the American Heart Association.
“Life is not promised, but being differently abled doesn’t mean I am not able to accomplish my dreams,” Toni said. “I am no longer ashamed of how life altered me; I am a better me because of it. Now I am here to share my life, music, and inspiration with the world as a disabled artist.”
Toni recently released her song, I Am Victorious, dedicated to raising awareness of stroke in the young and people with disabilities in general.
Singing in the Key of Aphasia
It is a curious thing, is it not, that survivors who cannot speak because of aphasia can often sing clearly and sonorously despite their strokes? “This is because the brain processes language and music differently,” said Nidhi Mahendra, associate professor of speech language pathology in the Department of Communicative Sciences and Disorders at California State University-East Bay in Hayward, California. “While language is principally processed in the left side of the brain; fully processing complex language and music engages both left and right hemispheres of the brain,” she said. Neuro-imaging research is showing that music and language share many overlapping areas in the brain.
The Aphasia Tones enjoy rehearsals as much as performing.
"People with aphasia often have limited access to participating in community activities due to the language barriers created by aphasia,” said Ellen Bernstein-Ellis, director of the Aphasia Treatment Program (ATP) at CSU-East Bay. “I observed that our ATP members always responded well to music-themed activities and were inspired by a music group at the Aphasia Institute in Toronto,” she said. She started the Aphasia Tones choir in 2009 based on a Life Participation Approach to Aphasia, which emphasizes involvement in real-life, meaningful activities as opposed to speaking drills. “We had 12 brave members, but after our first performance or two, the other members could see that we were having a lot of fun and the choir kept growing.
Mahendra says there are several factors at play that make singing easier than speaking for people with aphasia. “You’re thinking about the music and the melody rather than the specific words and the melody rather than the specific words and that actually carries the words, allowing them to flow better," she said. Music also makes an emotional connection with our thoughts and memories; it also reduces stress, improves mood and positively influence verbal and nonverbal communication.
The choir, which has about 25 members, is directed by graduate students in speech pathology, who combine their musical talents with their expertise in adapting rehearsals to be aphasia-friendly. Over the past seven years, the choir has performed three to six concerts a year to audiences ranging from 25 to over 250 people. Each concert allows the members to be ambassadors in raising awareness of aphasia. The choir members join the graduate students in providing materials about stroke prevention and aphasia at the concerts.
Many of the singers say rehearsals are their favorite part of the week. Some note they have more confidence while others feel that it has improved their communication skills. Their performances are a chance to show what they are capable of.
The Aphasia Tones members like singing well-known favorites by the Beatles, Elvis or Frank Sinatra, but they take great pride in learning and performing new and challenging songs such as “Fix You” by Cold Play, “Don’t Stop Believing” by Journey or “Fight Song” by Rachel Platten. Bernstein-Ellis noted that the singers are proud to wear their Aphasia Tones polo shirts in the Cal State East Bay colors — it gives them an identity beyond being an individual limited by aphasia. They are empowered members of a community choir that can raise both spirits and aphasia awareness with their music. “Aphasia choirs are a shining example of Victor Hugo’s comment that ‘music expresses that which cannot be put into words, and that which cannot remain silent,’” she said.
The Aphasia Tones are determined to get their message out. One of their signature songs is a re-write of “This Land Is My Land” that incorporates a message about aphasia:
It takes a while when we are speaking,
To find the words that we are seeking
It’s called aphasia, but we keep going
This land was made for you and me
Now with aphasia, we may speak differently
Don’t let it phase ya, we’re smart and funny
We are supported, we stand united
This land’s still great for you and me
The choir looks forward to a yearly June concert to promote National Aphasia Awareness month. “They take particular pride in knowing that they have been a model for other aphasia choirs emerging across the country and world,” Bernstein-Ellis said.
Mahendra appreciates the way the choir has multiple beneficiaries. “The creation of the choir and its student clinician co-directors symbolizes the incredible work that is possible at a university training program where we get to straddle innovation, instruction, clinical service delivery and scholarship all at once,” she said. “Working with the Aphasia Tones as clinicians teaches our students every day that being a speech-language pathologist is a tremendously rewarding career that changes peoples’ lives.”
“It gives the choir members both a sense of joy that comes from making music together as well as a sense of personal accomplishment,” said Bernstein-Ellis. “As one member said, ‘It was hard work, but it paid off.’”
Survivors Chime In
The Chime Strokers, led by Lauren Turner, often perform in and around Peoria, Illinois.
Music is always an important part of Retreat & Refresh Stroke Camps, which are held all over the country. A music therapist is hired for each camp and leads singing, drum circles and instrument playing during the camp weekend. During 2010, several music therapists at the Peoria camps brought hand chimes, which allowed campers to make beautiful music with little effort. “Hand chimes are a perfect instrument for survivors, since you only need one hand to play it,” said Lauren Kramer, a music therapist and director of operations for Retreat & Refresh Stroke Camps.
The campers loved them, and some suggested forming a chime choir in the Peoria area. Several campers even committed themselves to being in the choir! After raising enough money to buy a set of chimes, which cost over $1,000, the group officially began practicing on Tuesday nights. That fall of 2010, the choir met a few times and played at a camp fundraiser in October. And the Chime Strokers, a tone chime choir, was born.
The original plan was for the choir to comprise only survivors, but at their first performance they needed more hands and some caregivers were recruited. “Now those caregivers really love playing with the group,” Kramer said.
When the Chime Strokers started, there were two directors, “and we would just point to the person when it was their turn to chime,” Kramer said. When one of the directors relocated, Kramer started using flipcharts, with chords denoted by colors and notes by letters. Kramer points to the chart and the chimers are responsible for following along and playing at the appropriate times. The method is therapeutic for the survivors because it helps with their motor planning, hand-eye coordination and focus.
There are a dozen Chime Strokers plus a couple of alternates. They play 10-12 performances each year at hospitals, churches, nursing homes and networking luncheons.
“The Chimers have brought Bob closer to normal,” said caregiver Ruthanne Scott, whose husband is a member. “He can talk now thanks to the connection in the brain between speech and music, and we have made the best friends as a result of the group. These people have become our life now. He loves playing in the group.”
The Chime Strokers perform a song called Let Me Do that was inspired when breakout groups at Stroke Camp responded to the question ‘what do you want others to know about you and recovery’ — their honest responses were later put to music and Let Me Do has become the group’s signature song.
This information is provided as a resource to our readers. The tips, products or resources listed have not been reviewed or endorsed by the American Stroke Association.