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‘Pied piper’ of Laguna Woods theater has an indomitable spirit despite diagnosis

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By David Dearing

Special to the Globe

Shakespeare writes in “Twelfth Night,” “some are born great, some achieve greatness, and some have greatness thrust upon them.”

Terry Fiset achieved greatness by becoming a driving force in the success of community theater in Laguna Woods as a performer, producer, director, singer and – like Shakespeare – a playwright.

But like a tragic heroine, Fiset’s life took a devastating turn: In 2014, at age 63, she was diagnosed with Lou Gehrig’s disease, or ALS, a neurodegenerative ailment that robs a person’s ability to walk, talk, eat and ultimately breathe.

The once shining star of local theater is now confined to a hospital bed in her Village home, able to communicate only via a Tobii eye tracking device that converts eye movement into data on her laptop. With this device she is able to send email, write stories, surf the internet, even buy things on Amazon, said friend Barbara Powell.

“That Terry is able to communicate via Tobii is a blessing to her and to her friends and family,” Powell said in an email.

Terry Fiset, left, and Benji Johnson appear in the Laguna Woods Theatre Guild’s “The Odd Couple, Female Version” XX
(Courtesy photo)

Laguna Woods actors Terry Fiset, left, and Estelle DiNunzio.
(Courtesy photo)

Sandy O’Connor, left, Terry Fiset and Barbara Powell appear on Scott Marvel’s Artist Showcase on Laguna Woods Village TV.
(Courtesy photo)

Terry and Don Fiset with late Laguna Woods performer David Bridges.
(Courtesy photo)

Terry Fiset on Scott Marvel’s Artist Showcase on Laguna Woods Village TV.
(Courtesy photo)

Lagunas Woods actors Estelle DiNunzio, left, and Terry Fiset.
(Courtesy photo)

Laguna Woods resident Terry Fiset, who has ALS, is helped by caretaker James Giberson at her home.
(Courtesy photo)

Laguna Woods resident Terry Fiset, who has been stricken with Lou Gehrig’s disease, gets a kiss on the forehead from her husband, Don, at their home.
(Courtesy photo)

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Fiset has the help of several full-time caretakers. Her husband, Don, always a source of support and comfort, who himself worked in theater, has been diagnosed with Alzheimer’s disease and has a part-time caretaker.

Because of the pain, Fiset can’t spend much time in her wheelchair, Powell said, and she often sleeps on ice pads to ease that pain. Fiset also had a tracheotomy in April 2020 and uses a ventilator.

“Terry maintains her wicked sense of humor, and it is a mystery to us that she remains so positive under these daunting conditions,” Powell said.

Recently, several of Fiset’s theater friends gathered on Zoom to savor their most vivid memories of her. And thanks to Powell’s record-keeping, Fiset’s collection of shows in the Village is well-documented.

Two years before the diagnosis – in May 2012 – the Fisets moved to the Village from Florida to be near their granddaughter, Indira. Almost before the boxes were unpacked, Fiset called then-Theatre Guild President Bob Powell to ask how she could get involved in theater production.

It was barely two weeks before the opening of “You Can’t Take It With You,” and most of the work had been done. However, Powell invited Fiset to attend a rehearsal. Within a week, she was doing makeup, wardrobe and other last-minute tasks for the show.

A theatrical gem had found her way to Laguna Woods.

In October 2012, Fiset was the musical director for Theatre Guild’s “Hooray for Hollywood.” The following spring she starred in, directed, and produced “The Odd Couple, Female Version.”

October 2013 saw the premiere of Theatre Guild’s “Love, Sex & Laguna Woods Village,” with Fiset as writer, director, producer and performer. The play, which had nearly 50 cast members on stage at the Performing Arts Center, was so well-received that an encore performance was staged in spring 2014.

In November 2013, the Old Pros brought “Agnes of God,” directed by Jeanne Sanner, to the PAC. The play had only three characters in addition to a person with a beautiful singing voice – a part that seemed made for Fiset.

“Terry had the voice of an angel,” fellow actor Artie Rosenstein recalled.

Sanner says that without Fiset’s vocal genius, “Agnes of God” would not have been nearly as successful.

In October 2014, the musical “OY,” produced and directed by Fiset, made its way to the PAC. It was another theatrical success.

When Fiset began using a wheelchair, her contributions to theater continued. Fast forward to 2018, when she co-authored “Grandparents’ Revenge.” The cast included her daughter, granddaughter and grandson.

In 2020, Fiset co-authored “Love, Sex & the Big City,” which was scheduled to be performed at the Performing Arts Center in March of that year.

“She waited until the show was to be over before she had the tracheotomy as she was helping direct from her wheelchair with the use of a microphone to amplify her voice,” Powell said.

Fiset had wanted to tell her story onstage as one of the characters, but the role was too difficult due to her limited mobility.

Then, COVID closed the theater during dress rehearsal.

Part of what made Fiset a great achiever in Village theater, friends recalled, was her attention to the smallest detail. Carol David, who often worked backstage with her, said Fiset laid out every prop, labeled according to act and scene.

Bill Brown, who worked backstage, was impressed with Fiset’s having ideas while still being receptive to the ideas of others. He recalled that she would know the answer to such questions as, “How do you create the sound of spaghetti against the wall and keep the mess off the stage?”

Through it all, Fiset remained a down-to-earth person whose liberal use of salty comments was the stuff of legend. Rosenstein, who described Fiset’s vocals as the voice of an angel, recalled that she could curse like a sailor.

Yet her comments and suggestions were given with love, a touch of humor and forgiveness. No one took offense when she would utter “that was craptastic” when what she saw or heard was not up to her standard.

Sue Brown shared that once, when she was on stage and had to deliver a line for Fiset’s entrance, she gave the wrong line and walked off stage. Fiset’s response? “Sue, you left a turd on the stage.”

To Sandy O’Connor, Fiset once said, “Now we know you can read well, but can you dance?”

Fiset’s theatrical talents came from hard work. Her lovely voice and stage presence were honed during her study at the American Conservatory of Music in Chicago where she also studied piano. She toured with comedian and singer Frankie Fontaine, who was best known for his TV work with Jackie Gleason.

After contracting ALS, Fiset wanted to keep her voice primed to sing. She sought the help of voice coach Andrea Caban to try to keep her voice from the ravages of ALS as long as possible.

Caban wrote and performed in the play “The Voice Bank,” based on Fiset’s story. It is described on Caban’s website as “the story of one woman who defies her ALS diagnosis to fight for the privilege to keep speaking. Caban plays both herself and Terry, a woman with an indomitable spirit and a passion for performance, as they manage Terry’s progressing symptoms through voice and accent training.”

“The Voice Bank” was performed at UCI, as well as at the PAC, with Estelle DiNunzio’s help.

Fiset wanted to contribute to this article by answering a few questions. Powell spoke with her at her home.

What was your favorite piece that you directed in the Village and why?

“‘Love, Sex & Laguna Woods Village’ because it is about us and the quirky things that are unique to living in ‘Camp Laguna.’”

What is your favorite memory of theater in the Village?

“I loved singing backstage with David Bridges. He knew so many songs, and if he didn’t know the actual words, he would make them up.”

What is your favorite musical?

“‘The Producers.’ I wrote a parody called ‘I Want to Live in Laguna’ based on the number ‘I Want to Be a Producer.’ We haven’t gotten a chance to do it … yet.”

How about your favorite musical number?

“I love the musical ‘The Yearling.’ Barbara Streisand did the song  ‘The Kind of Man a Woman Needs.’”

What is your favorite nonmusical show?

“‘Stage Door,’ which was set in a women’s hotel like the Barbizon, is my favorite. It has a great cast: Katherine Hepburn, Ginger Rogers, Lucille Ball, Eve Arden and Ann Miller. This movie kind of inspired ’Love, Sex & the Big City,’ a musical Barbara Powell and I wrote which was set in the Barbizon.”

Friends on the Zoom call shared some adjectives that best describe Fiset: inspirational, talented, motivated, triple threat, intelligent, organized and loving. She was like the Pied Piper: People would follow her anywhere. She brought out the best in people, and actors wanted to please her because she cared so much.

Now when they visit her, DiNunzio and Powell tell her what they are doing, and she has lots of ideas to offer. It is fun for her, and she wants to be involved however she can. Fiset makes people comfortable with her condition when they visit. Although she is losing control of her body while Don is losing control of his mind, she is still so giving.

“Many of us wonder ‘Why,’ with all that she has lost,” Powell said. “She just wants to live. She has down days and gets frustrated, but her spirit remains an inspiration to those who know her.”

Together, the Fisets have an overwhelming financial burden. Sanner has started a GoFundMe campaign for the couple. Go to GoFundMe.com and search for Fiset.

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