PEAKS ISLAND — When Julie Goell worked as a clown and mime on the streets of Rome, she communicated in silence with movement, makeup and a distinctive black bowler hat that she rolled down one arm, flipped onto her head and tossed back into her hand.
Today, at home on Peaks Island, her life is marked by a different kind of silence. A neurodegenerative condition, perhaps Parkinson’s disease, has reduced Goell’s ability to speak to utterances, delivered with great effort. She keeps a printed alphabet on a piece of cardboard at her lap, sometimes spelling out words by pointing at letters when the effort of speaking is too much or too frustrating.
Her only prop is a pair of dark glasses. “We’ll keep the movie-star thing going,” her husband, Avner Eisenberg, says, leaning in to adjust the sunglasses that shield his wife’s eyes from the late-morning island sun that fills their living room. Goell is seated in a favorite green chair, covered in a blanket and supported by a neck brace.
It’s been a rapid decline for Goell, who for five decades entertained audiences around the world with her clowning, miming and singing. In September 2009, she complained of imbalance and slurred speech. Her symptoms worsened and, within a year, she stopped performing. Doctor’s think she has Parkinson’s disease, but they aren’t sure. Eisenberg suspects his wife’s illness began with a tick bite, left untreated, in 2009.
This summer will be the first in a quarter-century Goell has not taught her performance class at the Celebration Barn Theater, a center for physical theater in the western Maine foothills.
The disease has left her, at 65, barely able to move or speak. She depends on her husband, friends and a team of caregivers to provide 24-hour support.
But just as she built her clowning repertoire around improvisation and adapting to challenging audiences, Goell is improvising her way through this disease. Goell structured her performance life around something she called the Eccentric Principles, central to which is the belief that theater is a game, there are no firm rules – and the clowns are the rule-makers.
“The rules are changing, but Julie is continuing to stay ahead of them. She is the rule-maker of this experience,” said Amanda Huotari, artistic director at the Celebration Barn and a longtime student and collaborator.
• • • • •
Before she lost the ability to speak well, Goell dictated stories to island friends. The result is a new book, “Life in a Clown House: A Manual and a Memoir.” The first part of the book is a how-to guide to clowning and Commedia dell’Arte, one of Goell’s specialties, with exercises, discussions of her performance principles and her relationship with audiences. The manual puts in writing many of the lessons Goell has taught at the Celebration Barn, and it satisfies a long-held goal to organize those principles in book form.
The rest of the pages are stories from Goell’s life, told as vignettes with humor, tenderness and the insight of an observant mime.
Goell and Eisenberg have lived on Peaks for 30 years, although Eisenberg – a clown himself, Avner the Eccentric – half-jokes they were so busy in the early years they came home to Peaks only long enough to visit their stereo. But over time, and especially after baby Zev was born in 1988, they put down roots.
The book is an example of island will. Peaks Island friends who are part of the literary community made it happen by taking dictation last summer and fall, organizing document files and photos and working with purposeful haste to self-publish. Illustrator and children’s book author Annie O’Brien was among eight or nine friends who listened to Goell’s stories, asking questions, taking notes and confirming details.
“It was clear that Julie’s health was slipping,” said O’Brien, who showed up once a week with her laptop. “It was imperative to move quickly so that we could complete the dictation while she was easy to understand, or before she was more difficult to understand, and so that she would get to see the book and really enjoy it.”
O’Brien was astonished by the stories she heard and the way Goell told them. She dictated perfect sentences, sometimes just one word or phrase at a time. Goell knew her speech was failing, and she chose her words carefully. She didn’t have time and couldn’t afford wasting energy.
As summer turned to fall and Goell’s ability to form words in a way that her friends could understand began slipping further, the process slowed. Instead of speaking as the words came to her, Goell distilled her thoughts and mentally composed sentences before speaking, and then shared them deliberately and with great effort. O’Brien compared it to mining for jewels.
“I kept commenting on the quality of the prose she was creating,” O’Brien said. “At one point, she said, ‘Pain is a great editor.’ That is my strongest memory of the book and my learning.”
• • • • •
Goell’s memoir began in Nicole d’Entremont’s Sudden Fiction writing workshop on Peaks in the fall of 2012. Goell wrote about her life and what she was going through. She was still active and creating new work with puppets and pursuing music and other creative outlets. But the disease was advancing. Goell was using a cane and needed help walking.
Goell knew what was coming, and she wrote about bargaining for time in a piece called “Let’s Make a Deal.” In her scenario, a patient gets to decide how much time she has left based on the quality of time she wants. A year of hard dancing will result in paralysis. Two years of skiing on weekends will leave her with a cane and the eventual revocation of walking rights.
In the story, Goell’s character bites her lower lip and begins to cry familiar tears as she considers her decision. “The warm trickle of saltiness was reassuring,” she writes.
That story became part of the book, along with another from the workshop, “Waiting,” about the birth of her son. The rest of the stories she dictated last summer and fall.
As a writer, d’Entremont appreciates Goell’s willingness to take on difficult subjects, like death. Her honesty is powerful and unusual, she said. D’Entremont got involved with the book because she knew Goell could write, based on her experience in the workshop. She wanted to help Goell tell her story. “I thought her piece was really stunning, and I knew she had something there.”
D’Entremont stayed involved because she learned valuable lessons as a person and writer – how to listen closely, “how to stay in the saddle with hard subjects,” and how to eliminate unnecessary words. Goell also taught her to be patient and precise.
“If I couldn’t get the right word, she would just hang in there with me until I did,” d’Entremont said. “Her grit and determination were so present in her word choices.”
• • • • •
The book came out in March, and friends celebrated with a party at the Goell-Eisenberg house on April 3. Like most island affairs, it was potluck casual, with music and singing. People read passages to Goell, who laughed and wept. “It was probably the best book launch ever,” d’Entremont said.
Eisenberg never knows how he’s going to answer when someone asks, “How’s Julie?”
For a while, his response was, “Never better.”
People were shocked that he would joke about something so dire. But how could he not? It’s what Julie would do, he reasons. Throughout this ordeal, she’s not lost her intellect, humanity or humor. Making people laugh, and sometimes making them a little uncomfortable, was the heart of her life as a clown.
Besides, what’s horrible has become ordinary in their lives. Why not laugh?
Seven years of tests and treatments have yielded no slowdown in Goell’s symptoms and no definitive answer about the cause. They’ve received a raft of diagnoses, with Parkinson’s or multiple system atrophy the most likely. “But we just don’t know,” Eisenberg said. Goell has asked that her brain be used for research.
What they do know is that Goell tested positive for Lyme disease seven years ago, after she discovered a tick bite. Her Parkinson’s-like symptoms followed.
As his wife’s condition worsened and she moved from a cane to a walker to a wheelchair, Eisenberg slowed and eventually stopped accepting bookings for his work as a clown and mime. The couple moved off Peaks Island to be closer to doctors on the mainland for physical therapy, but eventually returned to their island home and arranged for in-home care, island style.
“The island is a good place to be sick,” Eisenberg said. “Everybody looks after everybody. There’s great civility and a real democratic spirit out here.”
• • • • •
Louise Fox is among Goell’s caregivers. She is a former Peaks resident, now living in Cape Elizabeth. She was working as an aide at a Portland rehabilitation center when Goell was admitted as a patient. She had known Goell from afar from her days on the island, and was glad to be responsible for her care. When Goell moved back to Peaks, Fox followed as a personal aide. She spends two nights a week providing in-home care.
“I think Julie is an amazing gal, and I want to be a part of her life,” Fox said. “On an island, there’s a commitment to each other that you don’t necessarily have in other communities – that you don’t necessarily have in Cape or South Portland. There’s a genuine friendship and a desire to help.”
That’s why Goell came home, to be in her own house, surrounded by people who understand and love her. Last August, their son came home to get married. Goell was getting antsy and nearly pleaded with Zev to get married – and soon. As Eisenberg recalled, his wife’s email to Zev went something like, “Please come home to elope.”
And that’s basically what happened, with a ceremony that echoed Goell’s and Eisenberg’s own wedding in 1987. Goell and Eisenberg got hitched in a family ceremony, at Goell’s family home in Hunter, New York. They exchanged their vows, performed a ceremonial first juggle, and when they turned around to face their guests –surprise – everyone was wearing a red nose.
Goell weeps as Eisenberg tells the story. She has pseudo-bulbar affect, a condition associated with Parkinson’s that results in bouts of uncontrollable sentimentality. They bubble up intermittently and often inappropriately. She cries for everything and nothing. The irony of a clown who cannot stop crying is not lost. She still has energy to laugh.
But these are real tears. Her husband’s memory of their wedding day has left her silently sobbing. Eisenberg takes his wife’s hand in his, leans in and kisses her forehead.