Healing & hope 


  • John Clayton looks out the window of his Leverett home. Staff Photo/Paul Franz

  • Clayton at the door of his Leverett home. Staff Photo/Paul Franz—Paul Franz

  • Clayton looks out the window of his Leverett home. Staff Photo/Paul Franz—Paul Franz

Staff Writer
Published: 10/22/2020 6:27:33 PM

“Though worms destroy my body, yet in my flesh shall I see God.”

What can that mean, Leverett author John J. Clayton asks. “My body is already being destroyed,” he writes in his new memoir, “Parkinson’s Blues: Stories of My Life.”

Clayton was diagnosed four years ago with Parkinson’s disease, a brain disorder that leads to shaking, stiffness and difficulty with walking, balance and coordination. Its symptoms include everything from tremors in the hands, arms, legs and jaw to stiffness of the limbs and trunk, slow movement and impaired balance and coordination that lead to falls, something he expects he’ll know all too well at some point.

His mental acuity has suffered — memory, focus, concentration and sometimes even his understanding takes a hit, and he says that’s very difficult considering he has always been an academic.

“Sometimes I sit at my desk just looking into space while torpor and self-pity fill me,” he writes. “I’m ashamed that I’ve never been sufficiently filled with gratitude for my energy — for my breath, for the ability to read, to talk, to write. What remains?”

The professor emeritus at the University of Massachusetts Amherst seems most upset about the mental aspect of Parkinson’s — the robbing of what his entire life has been about. And he has a more aggressive form of the disease, so some of the symptoms have come on more quickly for him than others, and he most hates not being able to remember or answer a question quickly and with confidence. He searches for the right word at times.

Clayton has published nine volumes of fiction, both novels and short stories. His collection of interwoven short stories, “Minyan,” was published in September 2016, his collection “Many Seconds into the Future” in 2014. “Mitzvah Man,” his fourth novel, appeared in 2011.

“The memoir is not about Parkinson’s, though, it’s about the dark, unexpected things that happen to most people and how they cope,” Clayton says. “I don’t have any great advice. I just share what I know. I share what I’ve experienced. But, there are also some lighter moments.”

The book is not all tragedy and suffering. Clayton offers humor as a way to cope. He gave a recent virtual reading before 100 people, and he says while people had to be patient with him, he was very happy with the results.

Clayton muses that what’s most important is that people, no matter their struggles, make demands on reality and never take “no” for an answer — whether they face physical or mental challenges, they can’t give up and let it defeat them. Giving up, no matter the struggle, would be the easy way, he says, but if life is to be lived to the fullest, there has to be some sort of fight.

Whether it’s trying a new exercise, taking micronutrients or pushing through something that needs doing, the 85-year-old says stopping, except to rest and regenerate when necessary, is not an option.

What the disease hasn’t taken from him, at least not yet, is his writing, though it gets a little more difficult each day.

“I started to write about Parkinson’s when I was first diagnosed and what was happening to me almost immediately because of the disease,” he says. “I write something, and that leads me to something else.”

In the book, Clayton talks about everything from what it’s like to have the disease to healing to facing any obstacle with energy. He discusses mourning a life, even before it’s over, and he shares memories and dreams and talks about their importance. He talks about his mother, his father, his aunts and his son, who died of cancer two decades ago at the age of 32.

“My son Josh, he was filled with the spirit that surrounds us,” Clayton writes. “Josh, a singer-songwriter in his 20s, wrote about people opening to the spirit. We both did — I in writing of stories, Josh in his songs.”

Clayton writes that hardly a day goes by when he doesn’t think of his son and howl, silently or aloud; “howl aloud when no one can hear.” He says there are times he feels the same way about his current struggle, but only at times.

It just came to him

The local author says he’s not sure why he decided to write some of what he wrote for the book — it all just came to him.

“Some of my stories surprised me, while other stories were already there, waiting to be written,” he says. “The whole book is a surprise.”

He says he took a “bunch of different ideas” and hoped they’d fit — they do somehow. The book starts with the story “Parkinson’s Blues.”

“HERE’S WHAT I THOUGHT was in store for me as I grew old,” he begins. “I’d stay clear, strong and energized through my 80s, keep writing stories, and then I’d slow down and my heart would begin to give out, a stammering motor catching, stumbling, dimming. …

“But no, it turns out no, that’s not what’s in store. For in my early 80s Parkinson’s has settled on me, a vulture.”

Clayton says he’s been told Parkinson’s is not what will kill him and that should be of comfort, “but it has already submerged my life. I shake, I tremble. I have a hard time swallowing. So I drool. Have begun to stumble. Ah, but that’s the least of it. Worse, I become exhausted, wake exhausted, nap often,” he writes. “I’m usually half asleep. If I take a pill, I can obtain an hour of writing — slow, muddy writing on my laptop.”

He complains about the “masking” that happens with Parkinson’s, the “freezing” of his face. That seems to bother him most, because his once expressive features have drifted to where he can barely muster a smile — at least one that people can see — even if he’s smiling inside.

He says when he started the book, he questioned himself about the collection.

“They didn’t fit together, but came to me at the right time,” he says. “But each story has something to say not just about my predicament, but other struggles in life. While the story ‘Angry Bear’ fit with my sickness, it was also a story of the struggle between me and my father. I remember when he took me to see a ‘real’ boxing match when I was a kid. It wasn’t like in the movies. There was a lot of blood and I got sick.”

In one passage, he writes, “When I was a child, though I longed to be his friend, he was my enemy. I couldn’t imagine him as weak. But as he grew old, he became very weak, and I didn’t need to defend myself against loving him.

“Now, half a century later, my condition brings me close to him. He’s inside my skin. I look through his eyes. Strange.”

Clayton says a friend once told him he didn’t begin to have a relationship with his father until he died.

“I feel the same way,” Clayton writes. “Aging and Parkinson’s and the long process of mourning have given me the beginning of an understanding.”

He returns time and again to the issue of whether all of the stories included in the book fit together.

“It’s a book about how Parkinson’s took over my life and it’s not,” he says. “Anyone can relate. It’s also about how I was a member of a difficult family. Again, anyone can relate.”

When he writes about his mother, he talks about how everyone is special and no one is special — his mother felt she was special, and she was and wasn’t.

“We’re all broken, suffering, special, not special at all,” he says.

Clayton says when COVID arrived in the United States earlier this year, he realized that everyone is now struggling with that disease like he struggles, dealing with Parkinson’s. Everything has changed for everyone. He’s not special just because he’s struggling.

The writer grew up in Manhattan near the American Museum of Natural History and the Metropolitan Museum was just across the park. He spent a lot of time in the museums, he says.

“I went to private school on a scholarship and later went to Columbia (University),” he says. “Later I got a master’s in modern literature at New York University.”

He later received his doctorate in modern literature and taught in Indiana. By that time, he was married for the first time and had a daughter who today is in her early 60s. He taught in Europe through the University of Maryland, and Boston University for five years before heading to UMass, where he stayed until he was 65 and retired. He taught literature and creative writing there.

Clayton says he loved teaching literature and writing, but decided to retire at 65 — the same year his son died — immersing himself in his own writing. His stories have appeared in numerous publications and two personal essays were published in “Jewish Review of Books.” His stories have won prizes in O.Henry Prize Stories, Best American Short Stories and the Pushcart Prize anthology. His collection “Radiance” was a finalist for the National Jewish Book Award. He has also written two books of literary criticism.

He says his youngest son, Aaron, and his life partner, Hannah, are currently living with him and his wife Sharon in Leverett and Clayton is loving every moment.

“I have four children — of course, Josh is gone — Laura, Sasha and Aaron,” he says. “I have three grandchildren, as well, two adult grandchildren and the baby is almost a year and is named after Josh. Family is so important to me.”

He ends the book with “Coda: A Mystery.” He writes about his grandparents speaking to him from their frames, and pictures of himself speaking to him from 30, 40 and 50 years ago.

“I let my old, gone selves address me. I’m not ashamed of them,” he writes. “I feel affection and even respect for the poor fool there on the wall. He’s smiling, trying to please, trying to appear strong — though we both know how incomplete he is, the young man in those pictures.”

But, he’s not telling his whole truth, he writes.

“Though I want to be thankful, I’m aware instead of my exhaustion from Parkinson’s. Here I am Lord, stumbling to the bathroom, and though I’ve slept deeply, my body is ragged and full of sleep; or here I am, sitting at my desk, struggling to put sentences together.”

He finishes, “Still, I feel close to the truth beyond desire, beyond the words I can’t quite hear. The mystery. I’ll be gone soon into the mystery. The joke about Parkinson’s: you don’t die from Parkinson’s, you have to live with it — you die from something else. And then? That’s the mystery. I’ll remain in the mystery, in memory, and in the words.”

For more information, email Clayton at: johnjacobclayton@gmail.com. Also visit: www.johnjclayton.com or JohnJClayton on Facebook.

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