Peggy Chun uses the word "fun" a lot.
We stayed out too late on Friday night. Oh, it was fun.
Look at the Easter hat they made for me. Isn't it fun?
The scratches on the ceiling are from the Christmas tree. That was so much fun.
Peggy Chun uses the word "fun" a lot for someone in her condition.
She can't walk. She can't move her arms. She can't even breathe for herself anymore.
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| Paint brush in her mouth, Peggy Chun smiles at granddaughter Indiana Chun, 9 months, who follows suit. As Lou Gehrig's disease took away use of her hands, the beloved Island watercolorist devised ways to paint with an assistant moving her head.
Richard Ambo • The Honolulu Advertiser
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But she can still talk, which is something of a miracle. She can paint. She can have fun.
Chun, 58, is perhaps Hawai'i's most beloved artist, both for her work and her personality. Her watercolor paintings of these islands have become as familiar and dear as the scenes they depict: a sunlit taro patch, a well-loved old plantation house, a lush valley singing with color.
She's the sort of person who makes you feel like an old friend the first time her hazel eyes smile in your direction. Her house is filled to the ceiling and beyond with silly presents from buddies and souvenirs from riotous celebrations. She is the life of every party, the one who gets everyone to wear funny hats or wild costumes, the type who makes you feel so relaxed and joyous you don't even care you're acting like a nut.
"Her whole life, her theme was to live large," says friend Marita Salassa. "We're trying to make it the same as it always was."
Family burden
In the spring of 2002, Chun was diagnosed with ALS (amyotrophic lateral sclerosis), also called Lou Gehrig's disease.
It was something she feared her whole life. ALS took the life of her grandfather, her mother and her twin sister. In most cases, ALS does not have a genetic link. In Chun's case, it clearly does.
The disease affects motor nerve cells, but not sensory nerve cells. As the condition progresses, patients lose voluntary muscle control and eventually become totally paralyzed, though they can still feel the limbs they can't move. In the later stages, where Chun is now, patients can't breathe on their own or swallow. Through it all, ALS does not affect the mind; creative thoughts, perception, memory and intellect are all intact.
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| A dedicated corps of volunteers known as Peg's Legs looks after the artist's needs 24 hours a day: about 100 people in all. Peggy Chun, center, relies on a ventilator to breathe.
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"Grab my hair. Show how Tiare helps me paint," Chun says to Salassa.
When ALS took the functioning in her right arm, Chun took up the brush in her left hand and created a series of paintings wholly different but just as striking as the work she had done with her dominant hand.
When the disease took away the use of her left hand, Chun started painting with her mouth, using a brush she holds with her teeth. She is at the point where she cannot move her head by herself, so friends hold on to her hair and move with her commands: up, down, left, right.
"Now do it again," she tells Salassa. "It feels good."
Salassa does.
"You never lose any feeling, but I would hate to be paralyzed and not feel," Chun says.
Never alone
Salassa and her daughter Tiare are just two of "Peg's Legs," a group of 70 core and 30 more people who are keeping Chun alive and making sure her life is as full and fun as possible.
Last November, Chun underwent surgery to have a breathing tube inserted in her trachea. A top-of-the-line portable ventilator breathes for her.
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| Peggy Chun demonstrates her technique: Pat Clowe, left, holds the easel while Jessica Smith, right, moves her head according to her directions. Chun has plans to keep painting when she cannot talk.
Richard Ambo • The Honolulu Advertiser
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"She can never be left alone, even for a minute," Salassa says. "The tubing come undone in the trach. Something can go wrong with the ventilator. Someone is with her at all times, and there's a hand resuscitator in case of equipment failure. We all had to learn to use it."
Volunteers cover 21 shifts a week to look after Chun.
A-level caregivers have learned nursing skills and can do things such as suction the tubes and give medication. B-level volunteers are the assistants. They clean, do laundry, and help get Chun into the wheelchair with the "chicks who rip" bumper sticker on the back.
"Only a handful of us knew Peggy before she got sick," says Suzanne Maurer, who handles the scheduling for all the Pegs Legs. "The rest just heard about Peggy and wanted to be here."
Private caregivers have been hired to look after Chun overnight. "But they work for $10 an hour, so that's almost like they're volunteering," Maurer says. "They're just amazing."
Chun's health insurance promised 100 percent coverage, yet her care has exhausted the allotted nursing money. Even with all the volunteer support, Chun's medical care costs $12,000 to $15,000 a month. Peg's Legs and Friends of Peggy Chun have been scrambling to put together fund-raisers.
"If we put her in an institution, insurance would cover her care," Maurer says. "But she's alive because of her art. She's alive because of this house. You can't put an artist in an institution."
Full of Life
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| Maile Ostrem titles Peggy Chun prints by hand, sold by her company Peggy Chun Inc. Aside from the Island-themed work for which she is known, Chun also does whimsical, fantastic and holiday subjects.
Richard Ambo • The Honolulu Advertiser
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On an oppressively humid Friday afternoon, the house is hopping with activity. A crew from Peggy Chun Inc., her art business, is titling and packing prints for the Made in Hawai'i festival at the Blaisdell. Caregiver Kelly Jones is tying hot dogs to embroidery floss so two visiting keiki can go fishing in the little stream that runs through the yard. Chun, in a pineapple print dress and Spam can earrings, is talking story with printer Pat Valenti and his wife, Mary.
Pat also has ALS, and he visits often to ask questions about what to expect. It's become very important to Chun and her volunteer crew of supporters to reach out to others with the disease. They've figured out some things along the way, and they'd like to help others live as fully as Chun does.
Like wheelchair dresses. One of Chun's buddies is a gifted seamstress who came up with
a design that slips easily over Chun's top, drapes demurely over her lap, but has the seat cut out so she doesn't get tangled or bunched-up in transit. Pat Wassel altered all of Chun's favorite dresses this way.
"It's hard to find wheelchair clothes that don't look like hospital gowns," Chun says.
"No khakis or pinstripes, huh?" Valenti says.
The two smile at each other.
And then Chun is off on another story about fun.
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| A paralyzing disease hasn't stopped local artist Peggy Chun from painting. |
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| For more on ALS
www.alsa.org
To see Chun's paintings
www.peggychun.com
To help with expenses
Send donations to:
Friends of Peggy Chun
3115 Alika Ave.
Honolulu, HI 96817
Phone: 595-8435
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On a recent excursion to the zoo, Chun got to paint with the elephants, propping canvas on her lap while the elephants held the paintbrushes in their trunks. "I still have paint on the wheelchair from that," she says.
"You needed that little boost," Salassa says.
Salassa is wearing a retro nurse's frock that Chun thinks is hysterical. "I went to nursing school 30 years ago in Minnesota," Salassa explains. "I quit 15 hours before graduation.
My mother saved this dress all these years. And here I am with Peggy," Salassa says. "We always dress up for Peggy."
"You know, you can eat the crayfish," Chun says, referring to the kids fishing in the little stream. "Well, we did once." Her smile hints that maybe this was during one of her infamous parties. "They were pretty tasty."
Chun hasn't eaten anything in over a month now. In July, she decided to start on tube feeding. With the trachea tube in place and the difficulty she has swallowing, there were just too many risks.
"You just make these choices to stay alive," Chun says.
"All I think about is 'opihi. A friend of ours from Moloka'i used to fly it over fresh. 'Opihi just tastes like Hawai'i. Of course, poke would be the second choice."
At first, when she started to lose the ability to swallow, her helpers had to use a product called Thick-it to help her ingest liquid. Thick-it gives water the consistency of apple sauce, so there's less chance of choking or getting into the windpipe.
Just for fun, they had to try Thick-it in everything: scotch, red wine, champagne, bloody marys. Thick-it in champagne didn't work, Chun reports, but "the best was Thick-it with warm sake."
Eternal Hope
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| Paints are organized into numbered, labeled boxes at Peggy Chun's home to help the rotating cadre of volunteers find them easily.
Richard Ambo • The Honolulu Advertiser
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These are Peggy Chun's days: friends bustling through the house, caregivers monitoring her health minute to minute, a relentless optimism despite losses and setbacks, and the underlying belief that life — even a life that is fragile and difficult — is something to be celebrated.
And there's the baby.
Chun's granddaughter, Indiana, is 9 months old.
Chun tries to paint every day. Much of her work now is for Indiana. The caregivers are learning their colors by code so that when Chun can no longer talk, she can blink to indicate which green she wants, and where.
She's on a new treatment protocol, and they're waiting to see the effects. Everyone is hopeful.
Salassa, checking tubes and looking very official in the vintage nurse uniform, calls out a question to which she already knows the answer:
"Why do you want to hang around, Peggy Chun?"
Chun smiles and her hazel eyes flash. "Oh, there's so much to do!"
Lee Cataluna's column runs Tuesdays, Fridays and Sundays. Reach her at 535-8172 or lcataluna@honoluluadvertiser.com.
