Voice Changes
Like many things Parkinsonian, the changes came on slowly and subtly, but they didn’t relent. After a morning of teaching or when speaking a lot at meetings, my throat felt scratchy and sounded tired. Though I’d been a public speaker for decades, speaking loudly enough to be heard, especially in noisy places, became more challenging and even painful. And when I didn’t speak from deep in my diaphram, my conversation partners would say “Huh?” and “What?” more often than ever before, cuing me to repeat more loudly what I had just said.
Many people with Parkinson’s experience voice changes. Looking back, my own voice began changing several years before my diagnosis in the fall of 2016. Since then, I have worked with an exceptional speech therapist named Stephanie Coker, who gives me exercises to help strengthen my voice and coaches me on how I may use it differently.
Voice Challenges
It’s late morning on a Wednesday in the spring of 2017, and I still have not shared my diagnosis beyond three or four close friends. I stand in front of a group of first-year University of Texas students in a course I teach in the Steve Hicks School of Social Work. Titled Mentoring Boys into Men, the course focuses on male psychological and social development, or psycho-social development in social work speak.
As we cover the day’s topic, I speak about the pressures that boys and men face, beginning at very young ages, to conform to norms of masculinity; norms that discourage emotional vulnerability, intimacy, and connection.
“These pressures and norms are not only unhelpful but, in most cases, they’re unnatural and unattainable,” I say. “From the time they’re born, we teach boys to push against what’s natural. We discourage them from showing any vulnerability, much less weakness, which, of course, we often equate. And the same goes for intimacy and authentic human connections; we don’t encourage this either. Instead, we teach and reward boys and men for independence, stoicism, and endurance. We teach them to lead isolated lives, emotionally cut off from themselves and others, especially when they’re in pain. For boys and men, anger is often the only emotion that we allow and validate.”
After pausing for a moment, I ask, “So, how do you see this changing?”
One of the students, a young Middle Eastern woman, Aisha, raises her hand.
I nod for her to speak.
“We need to call on adults, and especially men, to help break the cycle,” she says, “and that can happen only when more men risk speaking up about their true feelings and also display different behaviors tied to different norms of masculinity.”
I smile as she continues.
“We need men to be more vulnerable, to show strength by taking risks that may make them seem weak, at least to themselves, but actually make them strong—strong because it makes them human. As a society, we should applaud when men admit their fears, when they face them, head on, and ask for others to support them. That’s how deeper and more authentic connections form. And it’s the only way things will change.”
She speaks all of this from the front row, with an adolescent’s conviction and middle-aged wisdom.
“Thank you. I couldn’t agree with you more,” I say.”
But as the words leave my mouth, I clasp my hands firmly in front of me, so as to camouflage the back and forth shutter of my tremorous index finger. Then, walking across the wide and shallow classroom and listening to other students’ responses, I place my hand in my pocket to hide my stiff, bent Parkinson’s elbow.
“Hey You”
A few days later, at a bus stop on campus, I meet James.
He has short hair, a full beard, and wears faded baggy jeans, black high top sneakers, and a red hoodie. I assume he’s in his early twenties. With a single earbud he listens to something on his phone, and with his right index and middle fingers he taps on a tattered blue notebook opened in his lap. Walking closer, I can hear the rhythms of a hip hop beat. It sounds familiar, but I can’t quite make it out. Playing with words, James sounds out different lyrics before vigorously writing them down. None of the dozens of people who walk by seem to notice, much less to care.
I interrupt.
“May I ask what you’re working on?” I say.
He looks up from his notebook and squints, his head cocked slightly to the side.
After a brief hesitation, he says, “I’m sounding out raps to a beat. Here…have a listen.”
Unplugging the earbud from his phone, he turns up the volume. Now, I recognize the song—”Hey You” by Pink Floyd.
“That’s a great song…it’s been around a long time…and like what you’re doing with it,” I say. “I’ve been listening to you and your words are powerful.”
He looks at me with slightly more squinted eyes, as if to further hone his bullshit detector. I worry that I’ve said the wrong thing.
He continues to stare before offering a slight nod and a half-smile.
“My raps aren’t about getting more things, or being violent, or objectifying people, man. I’m bi-polar, and I rap about that,” he says.
I nod and wait for him to continue.
“I try to be a voice for voiceless people, man. You know, people who live with depression, schizophrenia, and other kinds of mental illness. We’re usually ignored or misunderstood. You feel me?”
“I do…and…and I’m sorry,” I say. “It shouldn’t be this way.”
He doesn’t say anything but purses his lips and offers another half nod, his eyes now scanning me.
“I’m Allan,” I say.
“James, bro,” he says.
We shake hands.
“Can I ask you something else, James?”
“Shoot,” he says.
“What can someone like me do to help change that?”
“Just don’t be silent, man. Speak up! ‘Cause people will listen to you,” he says.
Swallowing hard, I clear my scratchy throat.
“Thank you. That’s good advice,” I say.
He keeps looking at me. I try not to avert my eyes.
“Don’t be silent, man,” he says again.
My bus pulls up; its squeaking brakes intrude.
“I hear you, James,” I say, “and I’m glad we met.”
He gives me a fist bump, reinserts the earbud, and looks back at his blue notebook.
***
I’m still learning from Stephanie. I’m also learning how to take the kinds of risks that Aisha called for, and, like James, how to speak with a stronger voice.
_______
Photo by Jason Rosewell on Unsplash
Allan Cole is a professor in The Steve Hicks School of Social Work at The University of Texas at Austin. Diagnosed with Parkinson’s in 2016, at the age of 48, he serves on the Board of Directors at Power for Parkinson’s, a non-profit organization that provides free exercise, dance, and singing classes for people living with Parkinson’s disease in Central Texas, and globally via instructional videos. He also serves as a Community Advocate for ParkinsonsDisease.net, writing columns about living well with Parkinson’s. He is author or editor of 10 books on a range of topics related to bereavement, anxiety, and spirituality; and currently, he is writing a book on counseling people with Parkinson’s disease, which will be published by Oxford University Press.
Follow him on Twitter @allanhughcole