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Community flocks to support local woman diagnosed with brain disease

  • Suzy Polucci enjoys a moment at a February reception at Wendell Town Hall attended by nearly 300 friends. Polucci, 63, has worked with trauma victims as part of Community Crisis Response Team, and she’s also done mediation and conflict resolution. CONTRIBUTED PHOTO/ANNA GYORGY

  • Suzy Polucci enjoys a moment at a February reception at Wendell Town Hall attended by nearly 300 friends. CONTRIBUTED PHOTO/ANNA GYORGY

  • Nearly 300 people showed up for a farewell reception for Suzy Polucci at Wendell Town Hall, with a receiving line that snaked around the hall for most of three hours as she was treated as a queen, seated on a throne. Polucci has been diagnosed with Creutzfeldt-Jakob disease, related to Mad Cow Disease and leads to rapid brain damage. CONTRIBUTED PHOTO/ANNA GYORGY

  • Suzy Polucci dressed as Dudley Do-Right.

  • Suzy Pollucci poses for a portrait. Contributed photo



For the Athol Daily News
Friday, March 23, 2018

WENDELL — Suzy Polucci realized something was wrong when she couldn’t remember her dreams.

After years of keeping dream journals and even working with a South African shaman who’d guided her in interpreting messages from her ancestors, the nightly theater of her mind seemed to vanish about six months ago, followed by her ability to sleep.

“She said, ‘I’m not dreaming anymore,” said Polucci’s boyfriend, Tom Reynolds. Then a doctor noticed a hand spasm that led him to call in January for a battery of neurological tests at Baystate Medical Center.

“I never remember meeting anybody like this before,” Reynolds, a native New Yorker, remembers thinking after he first met Polucci following one of her theatrical performances at the Full Moon Coffeehouse not long after he moved to this area in 2010.

“She had this way of being really open, like the sky is open. It’s a big thing for a New Yorker: You’d see the stars like when you live out here. Suzy’s brain was just so wide open, with a lack of judgment that’s so captivating and filled with wonder,” he recalls. “I couldn’t get … I don’t know if I … I don’t want to get over it.”

In early February, not long after her Groundhog Day birthday, Polucci was diagnosed with the degenerative Creutzfeldt-Jakob disease — a disease so rare that only one case is diagnosed annually per million people, with the severe brain deterioration in a matter of months and death within a year.

Polucci, 63, has worked with trauma victims as part of Community Crisis Response Team, and she’s also done mediation and conflict resolution. But her experiences have been so vast that Reynolds said for a while he thought she was making it up — from being a pipefitter in New Orleans to selling Bibles door-to-door in Arkansas.

“I’d been kind of a misanthrope, until I met Suzy Polucci,” says Reynolds, holding back tears while reminiscing as part of a group gathered in a friend’s Wendell home about time spent with her. “She could start a conversation with the lamp post. ... She was just so down to earth.”

Court Dorsey met Polucci in the early 1980s, soon after she moved to the area and began working at the Franklin Community Co-Op in Turners Falls, where he also worked, in the days before it moved to Greenfield. They shared a strong interest in theater. Polucci became involved in Dorsey’s productions, beginning with a role as the Cheshire Cat in productions of “Alice in Wonderland,” and continuing with “Newspeak Cabaret,” “Ubu Roi” and “Globalize This!”

“Suzy is existentially present to herself and others, and to her humanity and the humanity of others. She never tires of wrestling with it. She’s philosophical, but not heady philosophical — more body-mind philosophical. And she’s always hooked into the humor of that when she talks about it with other people,” said Dorsey. “Her willingness to see herself and blow the whistle on herself and laugh with us at how human she is, frees everybody else around her to touch their own humanity. And so they fall in love with her. And everybody loves her that knows her.”

In fact, 70 people have signed up to be Polucci’s caregivers on a rotating basis, and she’s had musicians — including members of Amandla and Eventide choruses and Shelburne Falls folk singer Charlie King — serenading her regularly. And when her dryer broke down last week, there were two offers from friends to replace it within 15 minutes of an email request going out.

Last month, nearly 300 people showed up on two days’ notice for a farewell reception at Wendell Town Hall, with a receiving line that snaked around the hall for most of three hours as Polucci was treated as a queen, seated on a throne.

“She was quickly losing her ability to speak or walk, or be physical,” said Dorsey. “Very quickly changing. So many people wanted to see her, and she said, ‘I want to have a big party.’ It was a stunning outpouring of love for her. And she acted like she loved every single one of them.”

‘Staring death down’

Despite difficulties in her own life, Polucci seemed to share her sense of wonder at every situation, said Eveline MacDougall, who met her as a co-worker at the co-op when it was on Chapman Street in Greenfield, and was encouraged by her to take part in theater.

“She took me under her wing, and we were often the only two women in all the ensembles we were in,” recalls MacDougall. “She was either the strongest fragile person I’ve ever met or the most fragile strong person I’ve ever met,” describing Polucci’s frequent migraines and combined energy as well as stress right before performing.

“I was thinking of getting out of it because it was so stressful, and I remember I asked her one time, ‘Why do you do this?’ And her answer was, ‘Every time I go out there on the stage, I feel I’m going to die. And then I don’t die, and it’s such a high. It’s so amazing, staring death down.’”

At the Greenfield Community Garden, which Polucci — an avid gardener — helped MacDougall create, she brought “at-risk” teenagers she worked with at Community Action Youth Programs to help on work days, always arriving early, organizing everything, working hard, leaving late and encouraging everyone.

“I’d see her talk to them in the same way she had launched me as an adult when I was 22, saying, ‘Oh my God! Look what you did!’ And the person would feel more appreciated and validated. She’s probably the most supportive person I’ve ever met. Maybe she was someone who needed appreciation and validation and didn’t get what she needed at times in her life, so she understood that and would give it to other people.”

As Cheryl Fox, who first met Polucci in 1984, arrives one day this week at Polucci’s Erving home as part of a rotation of caregiving friends, she finds her on the couch in a living room filled with heart-shaped balloons, flowers and posters with hearts and healing messages that convey the outpouring of support. But today, about a month since her diagnosis, a new phase of the fast-moving, degenerative brain disease has taken hold, and Polucci is semi-comatose, opening her eyes occasionally and making mostly unintelligible sounds as Fox holds her hand and speaks gently to her, unclear how much she understands.

“No,” Polucci seems to utter, as Fox asks her if she wants more water.

Creutzfeldt-Jakob disease, which is related to Mad Cow Disease, is believed to be caused by abnormal folding of the prion proteins and leads to rapid brain damage, according to the Centers for Disease Control.

Fox, who worked with Polluci on theater productions as well as in conflict resolution, says their friendship was based on “her love for people, her way of giving reassurance where people might have felt hesitant about things.”

“A lot of people have felt so close to Suzy because of her ability to cut through on a personal level and say, ‘I love you. You’re a good person,’ that they’ve felt practically married to her. …. She’s also very committed to making people laugh. That’s part of why it feels like such an abundant community: When you laugh with other people, your heart grows bigger,” Fox said.

Longtime friend and former neighbor Muriel “Boots” Walker of Montague calls Pollucci “the Bodhisatva,” a Buddhist term for someone motivated by great compassion.

Polucci’s theater work — especially outrageously funny pieces she wrote and performed, like her 2012 “Brain Show: Who Do You Think You Are?” in which she donned a giant headpiece and assumed reptilian, mammalian and human personas to delve into the complexity of human behavior — subtly conveyed real-life human drama. Some were about relationships, others politics, “in skits that made it laughable, but then you could go home and cry,” says Paul Richmond, with whom she collaborated on several shows, like one about a couple trying to put an end to resurfacing conflicts from the past. “She managed to change that anger into laughter, wanting us to have hope, about making a change even if a situation didn’t seem like it was changeable.”

Facing a terminal illness, Pollucci has moments when she’s admitted, “I’m scared,” says Dorsey, but “the grace and humor with which she’s handling it is stunning.”

Another longtime friend, Nina Keller, on whose farm Pollucci lived in the 1980s, and where she will be buried, adds, “She created family away from her blood family, and she belonged in so many communities.”

Now those communities are drawing together, singing to their close friend, holding her and in a way responding to what Suzy Pollucci wrote in a Christmas letter three months ago when her health was suffering:

“I feel fragile and mortal. I want to marry all my friends, and I never want to let them go.”


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