Part 16: In Other Words
When silence speaks volumes...
Conjure up an object in your mind. See the image? What's the word for it? Picture your closest friend. What's their name? Look around the room and name five objects you see. The next time you can't remember the word for something, notice how that makes you feel. Clear your mind by saying your own name to yourself. Apreciate that you can do that simple act.
As a peer support specialist at ARISE, I was especially drawn to the stroke survivors with aphasia, those whose ability to speak was impaired. Because the tangle of blood vessels that caused the bleed in my brain was on the right side rather than the left, I could still express myself without difficulty. I couldn’t help feeling a tug in my gut when I thought how close I’d come to losing speech or cognition if the rupture had been on the opposite side.
Many people, including therapists, find it challenging to sit patiently with a person with aphasia as they struggle to speak. Often, the affected person simply stops trying to communicate because of the effort it takes. Their caregivers become interpreters to make it easier for everyone involved.
Each person afflicted with aphasia has a different version of it. Some people can’t speak at all and are only able to express themselves with sounds. Often the brain just generates expletives, which can be exasperating for the affected person and shocking for those around them. “Fuck” and “shit” have a tenacious ability to linger in damaged pathways, bursting forth with startling vigor. Others are left with a few simple words. At ARISE, one survivor, Irene, only retained the word “maybe,” which she infused with a multitude of emotions to get her meaning across. She was a smiling, optimistic presence despite everything she endured.
I started an aphasia support group at ARISE. Everyone who participated was given as much time as possible to try to express themselves. Sometimes many minutes went by without any words being spoken. We’d just sit together in silence. It taught me to slow down and pay more attention to the subtle ways we could communicate with each other without talking.
I was told by a few survivors with aphasia that in their minds they could hear exactly what they wanted to say, but the words simply wouldn’t leave their mouths. Others explained that they couldn’t retrieve the words they wanted from their memories. They were in a perpetual state of having an utterance on the tip of their tongue.
I liked to think I would have been like Irene if language had been taken from me, but I would probably have been more like Paul, one of the survivors I felt closest to. Paul was a botany professor before he’d had a stroke in his mid-fifties. He struggled with each word and was often overcome by despair. His self-image and his life had been based on his mental acuity and his ability to communicate effectively. More than once, out of frustration, he’d put his finger to his temple to mime shooting himself in the head. Paul’s interest in recovering mobility was eclipsed by his desire to regain his ability to speak with ease. He only wanted to take classes related to speech.
Paul enjoyed some of my teachings about relaxation and body awareness, especially when I played classical music as an accompaniment, but that was of secondary importance to him. When asked to select his courses for the upcoming term, Paul mustered his limited vocabulary with professorial dignity and said, “Speech, speech, speech!” It was maddening for him that he wasn’t allowed to concentrate exclusively on that part of his recovery because ARISE’s mission was to offer a “well-rounded curriculum”.
I asked Paul’s wife, Inga, if she happened to have an old video of him from before his stroke. I was curious to see what he’d been like so I could understand him better. A few days later, Inga brought me the tape.
“It’s the only one I could find,” Inga said. “I can’t believe this is all we have to remind us...” her voice trailed off and she held her breath for a moment.
“That’s fine,” I replied. “I really appreciate you doing this. I’ll be sure to give it back to you soon.”
“Well, the tape is just of Paul when he was putting together a presentation for a botany conference. It’s not very interesting. Mostly science jargon. But you’ll get a feeling for who he was...for him.” Inga handed me the tape.
That night I popped the video into the VCR. The image came to life. There was Paul, a little younger, very self-assured, sitting at a table talking to Inga, who was running the camera. Within seconds of watching the scene, I was sobbing, surprised by the force of my tears. The tragedy of this man’s transformation wrecked me.
The next day, I met with Paul in one of the private offices and told him that I’d seen the tape.
“It really moved me,” I said. He raised his eyebrows.
“Moved…you? And...why?” he said, agonizing over each word.
“Because…” I began, but found it hard to go on without breaking down. After watching the tape, I’d written Paul a letter to better express what I felt. I took it out of my pocket.
“I wrote this last night. Do you mind if I read it to you?”
“Read...it,” Paul said with a nod. I found myself shaking a little. I started to sweat. Maybe he’d be upset by what I’d written. Maybe I was being presumptuous. I hesitated. “Go…on,” he said.
Dear Paul,
Nothing prepared me for the shattering impact I felt as I watched the tape taken before your stroke. Not my smooth assurance that I understood you, not my sense of connection with you because I’m a stroke survivor too. I thought my mind had filled in the blanks, easily imagining what you had been like before. I was wrong. I gasped when your image came on the screen. I saw you moving pieces of paper with scientific terms on them, shuffling and rearranging them as you talked to your wife. Your voice went through me, right to my center and lodged there like a painful pearl. Your voice was beautiful, easy and modulated, a true teacher’s voice.
You spoke about mushrooms and flowers in botanical terms, concepts that are second nature to you. Your conversation flowed. Words came and went all within your control. Your movements were graceful and deliberate. I realized immediately that I hadn’t even begun to imagine who you had been. All the subtleties that make up a human being had been missing from my inner reconstruction. I finally saw you as the brilliant professor you are and realized the enormity of your loss.
I thought of all the times I tried to cheer you up. All of us do it as part of our job. I thought of the time I tried to get you to say the scientific names of flowers and tears came to your eyes because the words could not come to your lips.
Yet, I don’t want my work with you and others to be based on ignorance, complacency, or easily imagined caricatures of who you once were. I don’t want to forget the reasons why you roll your eyes and curse and burn with anger. I need to know. I need to feel that painful pearl so that the next time I smile at you, insisting that you try again to speak or stand and walk, I know just what it is that I’m asking. And because I’m filled with feeling and admiration for you, I’ll ask it anyway.
I had to stop once or twice to collect myself. I couldn’t tell what Paul was thinking when I glanced at him. I finally came to the end of what I’d written, hot and uncomfortable. The air in the small room was stuffy and close. I folded the letter and look up at Paul. He didn’t respond for a second, then he inhaled deeply and nodded his head.
“Thank… you,” he said. “Frustrating...so...mad...sometimes.” He shook his head as if to push away the thought, then he took my hand and squeezed it briefly. “Thank...you.”
My experience with Paul made me understand how easy it is as professionals to keep a psychological distance from patients. It also gave me deeper insight into why the staff at the hospitals I was in after my stroke behaved the way they did. Even I had found myself slipping bit by bit into the habit of seeing stroke survivors as different from myself.
I was in the unique situation of bridging the world between healthcare provider and patient. My job was to help stroke survivors improve, but the more I identified with my position at work, the more a veil slipped between me and the people I was serving. It took a lot of vigilance to keep relating to them as whole human beings and not simply as cases to manage or problems to solve.
It was hard enough for me to stay aware, but for those in the helping professions who haven’t experienced sudden disability firsthand, it’s even more difficult. It’s much easier to feel good about what you’re doing for others who are vulnerable if you push away the nagging worry that someday you might be, most likely will be, just like them.
Incredible. Keep them coming 🙏
As always an amazing piece and allows the reader to obtain insight into a world that many of us know nothing about. Aphasia is no joke and so frustrating for those affected. Thank you so much for sharing so much wisdom and heart.