In 1998, about a week before Daegan was to be born, Sage was in the bathtub trying to get some relief from the false labour contractions that had been plaguing her for days. I was in the bathroom getting ready to go out to the grocery store as Sage stood up to get out of the bath. And as she did, one side of her face relaxed. She noticed it in the mirror and tried to remark about it but only a few words came, each with great labour. “Something….wrong…OK?”
I called Sage’s mom from downstairs and we helped her get dressed and sat together in the bedroom where the three of us tried to figure what was going on. Sage was able to communicate but not well. It took great halting effort and sometimes the words that came out were not the right ones. “Did I say that right?” she would often say after a sentence. We would sometimes say “Oh yes, totally.” so as not to worry her even as inside we both were completely terrified.
After a quick call to the midwife, we were told to get to the emergency room.
I drove to the ER as fast as possible, knuckles white on the steering wheel, heart pounding in my ears even as Sage and her mom talked. Sage later told me at this time that while the rest of us might’ve been terrified, she was calm and remembers feeling happy about the way the wind felt on her face as she drove. “This must be how dogs feel.” she thought.
Once Sage was admitted and had had a CAT scan, resident after resident came in to check in on her and some asked standard neurological assessment questions.
“Sage, what year is it?”
“OK, thank you. And who is president right now?”
After they left, curious what was going on herself, Sage then said “I want to try to name our cats. Tell me if I get them right, OK?”
“OK.” At the time we had eight cats. Shelly, Jay, Cilantro, Habanero, Karma, Harriet, Claire and Anita.
“Shelly…Shelly…Shelly…Shelly…….Shelly…Shelly and………….Shelly. Did I get it right?”
Sage later said that she was still not scared but more curious and she couldn’t hear what she said to us – only what we said to her.
I said “No, but I’m sure we’re going to go figure it out.”
And then I excused myself to go to the washroom where I threw up, splashed cold water on my face. I looked at myself in the mirror and asked “What the hell is happening?” I met Sage online – before we were bodies to one another we were minds connected by language. Where was Sage? Is she someone else now? Will she go farther away?
A doctor came in and explained that she had aphasia – a language impairment. Of course that wasn’t a diagnosis – just a word for the symptoms she was exhibiting. There are lots of reasons one can lose the inability to find or pronounce words.
In the end, as the sun rose so, too, did Sage’s ability to speak. After breakfast she was speaking normally again. Other tests were done but none were conclusive.
As I look through the listings for what’s happening in Vermont on the weekend, an event catches my eye: “Aphasia Choir”. The name instantly takes me back to that terrifying night in 1998 when, for a few hours Sage was sitting in front of me but could not speak.
Karen Leary, a Speech Pathologist at the University of Vermont Medical Center, and singer-songwriter bridged two pieces of her life together when she read about drama troupes for people with disabilities. She knew that someone experiencing aphasia usually has an injury on the left side of the brain often caused by stroke or traumatic brain injury. However in many cases the right side of the brain is perfectly intact. In that case, often people who lack the ability to speak can sing. Ms. Leary began to look online to explore the idea of an Aphasia choir and learned that at least two existed – one in Texas and another in New Zealand. After some correspondence, she started her own in Northwestern Vermont. That was all I needed to know. I put it in to my calendar.
On a rainy Sunday afternoon I get in my car and drive north to Colchester. I’m not sure what to expect but based on the photo I saw with the event listing, I am pretty sure of one thing. This will be a small event. I’m prepared for a small school library with a few dozen people in the audience. As I approach the school where it is being held, Google tells me to turn left on to a dedicated road for the school. I’m surprised to see the two other cars in front of me turning left toward the school. I stop my car and to let a couple of oncoming cars pass before making my left turn but those two cars also turn in to the school. How surprised am I to see the parking lot look like this in all directions?
When I arrive there is a slowly moving lineup at each door to the school’s auditorium as people pick up programs and leave donations. There are few seats left but I’m lucky enough to find one in the very front row. I turn back and look at the size of the crowd.
The performers are already on stage. There are 52 members including 25 members who have either survived a stroke or have suffered a traumatic brain injury. Along with them are caregivers, spouses, students studying studying at the local university and an accompanying band.
The lights go down and Ms. Leary introduces the group who have been rehearsing since mid-March. She tells us that many folks in the choir find that the choir gives them the ability to experience relative ease of expression. Many of them have taken on other new skills and expertise from painting with their other hand to playing adaptive sports like adaptive kayaking.
Each of the musical pieces is introduced by one of the choir members with varying degrees of difficulty, some even using an touch-operated assistive device to speak for them. What is wonderful is the audience’s reaction to the difficulty. There is no sound of impatience just enthusiastic applause when they are able to say what they’re trying to say. Everyone is able to take the time they need.
It reminds me of something Sage always tells audiences in her class who are nervous and are worried they might make a mistake: “The audience is on your side. They want to see you succeed.” Nowhere is that more true than here. I will certainly be thinking back to that quote as I take on some of the performance-based challenges in the upcoming weeks of this project.
Have a look below at a one-song excerpt from the performance.
There’s a certain level of whimsy and silliness involved in the show also. Two members don Sonny and Cher wigs for “I Got You, Babe” and everyone wears a hat for “Oh What a Beautiful Mornin'” from the musical Oklahoma. This last one has a guest director, Randy Neal, who directed the choral music program at Bennington College in Vermont for over 25 years.
I don’t know why but the presence of this whimsy really strikes me: this willingness to be visibly silly and have fun while doing something serious. I don’t know if it’s a regional thing (I’ve been away from Vermont long enough that maybe I’ve forgotten this aspect?) or the nature of this group. It makes me wonder where we are now that we are all so self-conscious and worried about looking just the right way – only making people laugh in a particular acceptable way, not just having fun. How much more inner “screening” are we doing than we should be? What could our life be like if we loosened up a little.
Another choir member gets up and gives an introduction. He used to love to play guitar but now had lost the use of his right hand. Fortunately his brother is an engineer and through a little ingenuity he was able to create an adaptive guitar that could be strummed by a pedal pushed by the player’s left foot. And so one song was accompanied by this guitar.
In between some of the songs were announcements from various members about what the choir would like the audience to know. A few are below:
We come from all walks of life. Our strokes didn’t affect our intelligence. You don’t need to talk loudly when interacting with us. Please don’t leave us out of conversations.
Please look at us and address us when interacting. It helps us if you don’t talk too fast. You can ask us yes & no questions if you’re having trouble understanding us or want to help us get our messages across.
It takes time and effort for us to communicate so please listen closely and be patient. When we can’t say what we’re thinking, we may find other ways to express ourselves, such as writing or using gestures.
My first reaction to this is to think: “Of course! That’s obvious – who wouldn’t know that?”
But then I realize. that young man throwing up in the hospital bathroom wondering where his partner was might’ve needed to know that. She was there all along – and told him that just hours later. It just goes to show there’s a difference between the academic understanding of the idea and the practical. Sometimes the latter takes a bit longer to arrive.