Who better to tell the story of the Aphasia Institute than the people who walk through our doors everyday? They arrive with some nervousness and hesitation, but leave feeling more confident and excited about being an active participant in their communities again and the world around them.
Marion and Bill have been together for 61 years. They met on the dance floor, and after all these years still share a passion for travel and music. And like every good love story, theirs endures despite the challenges they may face. In Marion and Bill’s case, that challenge is aphasia.
In 2010, Marion, a retired director of nursing, and her husband Bill, a retired medical sales and marketing professional, started noticing that Marion was constantly repeating words and phrases. Concerned, they saw a neurologist and Marion underwent testing. Shortly afterward came the heartbreaking news:
Aphasia,” the doctor told them.
And that was that. “There
was a finality to it,” Bill recalls.
diagnosis means slow but progressive language impairment similar to Alzheimer’s disease, resulting from a deterioration of the brain tissue necessary for speech and language. While it tends to present later in life, PPA has been identified in people as young as 45 years of age. At first, it shows as an impaired ability to communicate similar to other forms of aphasia, but eventually symptoms such as memory loss begin to develop. Because people with PPA are fighting against a continued loss of language, they require an entirely different support approach.
coming at us from all sides. They tell
you what you have, but don’t tell you
what to do. It felt like a conclusion
with no indication that there’s a next
step at all. We knew that there had to
be more to life than this diagnosis.”
For people living with aphasia, there are certain moments they will always remember as turning points in their lives. For Alex, it was a cup of coffee.
About nine months after he suffered a massive stroke, Alex came to the Aphasia Institute for an introductory session. It was at that session he had a cup of coffee he’ll never forget:
“For the first time since my stroke,
I felt like I was doing something
normal. By myself. For myself.”
After nine months of what felt like a life of “eat, pee, eat, pee, eat, pee,” Alex poured his own cup of coffee, added his own cream, stirred it, and drank that cup of coffee among people who understood him and saw him for the person he was, not for the problem he had. That is when he came to a realization:
“My life re-starts NOW!”
And Alex hasn’t looked back or slowed down since. He is an active member of the Aphasia Institute community. He has witnessed the power
of communication, with his peers in conversation groups, and by participating in our music and art programs. He is a member of the Creative
Expressions group and was one of four clients whose photography was chosen as part of the My Voice, Through My Lens exhibit at Toronto’s MaRS Centre. It’s no surprise that Alex’s philosophy is:
“Try everything. Start.
Don’t sit down. NOW!”
“Help, Hope, Possible” – Ink on Paper, © 2014
Alex lost the use of his right hand and aphasia took away his ability to communicate. For most of us, that would be enough reason to give up.
But not Alex. One of his many sketches illustrates this perfectly. Entitled Help, Hope, Possible and drawn using his non-dominant hand, this work of art depicts a mountain with a chain of three people holding hands. The person at the peak of the mountain is working to pull the others to the top. Alex points to that person and says, “That’s me.” By sharing his story and words of encouragement with other clients, Alex gives them hope and helps them to see the possibilities of life after aphasia.
“Stroke” – Self-portrait, Oil on Canvas, © 2013
“Every day is better.” At the Aphasia Institute, we share Alex’s commitment to constant self-improvement and his relentless conviction that every day is better. He shares these words with every staff member, volunteer, and person with aphasia. That is why research and education at the Aphasia Institute are so important – to keep learning ways to make life better for people with aphasia and their families.
As Alex says, it’s important to say thank you to the people that encourage you. So we’d like to say thank you, Alex. You’re an inspiration to all
of us. And there’s always a fresh cup of coffee waiting for you.
All photos and artwork in this story were created by Alex. The photos were taken either with one hand or using a camera timer.
In June of 2016, Christine and her husband Vincent arrived home from their 25th wedding anniversary trip to Italy. Shortly thereafter, the Director of Business Development for one of the largest law firms in the world was overcome with a severe headache for two days. “Oh this is a bad one,” Christine told her husband and two teenage children. Despite the pain, Christine headed to work. That’s what she did. That’s who she was. There was important work to do.
Hours later, Christine called Vincent to take her to the doctor. By the time he arrived, she wasn’t making much sense. They rushed to the hospital. “My name is Tomato,” Christine told the doctors. She was suffering from a massive brain bleed. The surgeon warned them that if she survived, it would be with massive deficiencies.
Christine doesn’t remember much of what happened next…
… but surgeons immediately removed a blood clot from her brain, saving her life. Christine always prided herself on being prepared, but nothing could prepare her for what lay ahead this time: aphasia.
In the months that followed, darkness and frustration crept into her life. “I am supposed to be a smart person,” Christine remembers thinking, “so why don’t I know the difference between the words for a dog and a cat?” At 49 years of age, Christine began questioning her value in life, feeling robbed of her identity as a witty, go-getter professional.
Christine was impatient with herself, with the rehabilitation process, and with the unknown nature of her whole journey. After some very tough months, she was referred to the Aphasia Institute. The people there “got it.” No more frustrating homework. This was a place to connect with others who were experiencing similar challenges.
“The Aphasia Institute became my happy place. My light.”
Vincent also participated, joining the caregivers program—learning more about aphasia, how to cope, and how to support Christine. Vincent felt “like a weight had been lifted.”
Two and a half years after what Christine calls her “very bad day,” she has found a new purpose in life: to help others in similar situations by preparing them for what to expect after an aphasia diagnosis. Her mission is two-fold – she wants newcomers to the Institute to know it will get better, but she also wants them to know there is really hard, emotional work to do.
In summer 2019, Christine and Vincent helped celebrate the 40th anniversary of the Aphasia Institute by participating in our annual signature fundraiser, the Walk, Talk ‘n’ Roll. Along with asking their friends and family to support them in their efforts, Christine and Vincent also joined other clients, family members, volunteers, board members, and staff, to help raise awareness and funds for direct aphasia service, research, and education.
If you have attended one of our annual general meetings or browsed the Programs & Services section of our website, you’ve likely seen our Creative Expressions music videos. If not, please take a moment to go to our website and watch them. (We’ll wait.)
Now that you’ve seen all 25 videos of our members acting like pop stars, we would like to introduce you to the volunteer behind their evolution… behind their creation… behind the camera: Gayle W.
When one of our clients passed away a few years ago, her daughter, Gayle, had taken a much needed rest from being her principal caregiver and from rushing her own children to and from school. She needed time to herself.
That time, however, would be short-lived. The magic she and her mother had experienced in our programs beckoned to Gayle once more. What was meant to be a brief catch-up visit instead became a reminder of how special Gayle felt about the Aphasia Institute. It became the catalyst for her to ask how she could contribute. She wanted to become a volunteer, and the timing could not have been better.
The staff member responsible for our Spotlight Series of annual stage performances was moving to another province. Knowing the program’s
benefits to our clients, volunteer coordinator Shannon Hill recommended that Gayle try her hand at something to replace the series. She could do whatever she wanted, with one caveat: As wonderful as our full-scale yearly shows were, we no longer had the resources to do them.
With Gayle’s success as a documentary filmmaker at that time,** she felt she could do something unique by combining music and movement with the language of video. Our clients could experience something really special and, unlike stage performance, their work could be shared anywhere and anytime.
Gayle’s instincts were correct. The program has grown to include about 20 clients and 3 volunteers, and where Gayle used to be the driving
force behind all the video concepts, our clients and volunteers now bring in some of their own ideas and even their own props. The group has even created videos for our AGMs and thank you videos for our donors!
The magic of what Creative Expressions does for our clients cannot be overstated. These videos allow people with aphasia to engage in ways they would never have been able to before. They create for one another a supportive camaraderie while each explores their inner child in a profound way, reaching within themselves to communicate something new and fun with every video creation. Where aphasia had threatened to silence them, our clients–with some artistic nurturing from Gayle–have found a new way for their voices to be expressed and heard.