Peggy’s universe

An artist refuses to back down when Lou Gehrig's disease cripples her body, but not her imagination

STORY SUMMARY »

The art is learning never to mourn what is lost, but to celebrate what remains. Or better, to find gain in losing.

Embrace that and you have arrived in Peggy Chun's universe.

Book Signings With Peggy Chun and Shelly Mecum: » Saturday: Noon, Borders Ward Centre; 4 p.m., Borders Windward Mall » Nov. 4: 1 to 3 p.m., Native Books/Na Mea Hawaii, Ward Warehouse (this event will also be a public celebration of Chun's life) » Nov. 9: 3:30 to 6 p.m., Daughters of Hawaii Book Fair, Queen Emma Summer Palace

Chun's disease -- amyotrophic lateral sclerosis, ALS, or Lou Gehrig's disease -- has taken from her all powers of movement except in her eyes.

Yet by the accounts of all the people who support her -- and there are dozens in the volunteer army called "Peg's Legs" -- Chun's spirits remain solidly fixed in the positive.

And she's still creating. The artist's latest accomplishment is a children's book, "The Watercolor Cat" (Mutual Publishing, $14.95), written by one of "Peg's Legs," Shelly Mecum, and filled with Chun's paintings.

It's the story of Chun's creative life, told from the viewpoint of her cat Sara (nickname: Boo), who entered her home at about the same time that Chun became a painter.

Boo observes as the ALS advances. Chun loses the use of her right hand, so she learns to paint with her left, treating it not as a compromise, but as a new skill.

Her left hand fails; she learns to hold a paintbrush in her mouth. Those muscles fail; she uses a computer program that translates eye movements into color and form. Each step is not a loss, but a change that Chun celebrates for the new textures it gives her art. Paintings in "The Watercolor Cat" illustrate this evolution.

Chun can no longer use the eye-controlled program, but another experimental computer program allows her to "paint" through manipulation of her brain waves. She also paints "by direction," spelling out instructions to others by directing her eyes to letters on a customized board. She's even used her nose.

"After all," Chun says in the closing words of her book, "you don't paint with your hands; you paint with your heart."

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FULL STORY »

The condition is called "locked-in," when the brain is awake and aware, but the body can no longer translate the mind's commands into words or motion.

It's an end-stage, irreversible condition for someone with a neurodegenerative disease such as amyotrophic lateral sclerosis -- someone such as artist Peggy Chun, who lost all but the control of some eye movement several months ago.

Even that is fading. She can no longer blink, and has had to learn to sleep with her eyes open.

Yet, Chun is in control.

When Mutual Publishing presented her with "Watercolor Cat," the new book she produced with writer Shelly Mecum, Chun wasn't satisfied.

"At first, no," she says. "But Mutual gave Marvel and me the right to edit."

Marvel is Chun's caregiver, Marvel Armitage, who translates Chun's thoughts through a specially made spelling board. To use it, Chun shifts her eyes in the direction of letters that are grouped in numbered sets. (Under the number 1, for example, are the letters A through D. If Chun looks at 1, then 3, she's indicating the letter C, the third letter in the first set.)

Sounds tedious, but those close to her have learned "psychic spelling" -- completing her words after she picks out just a few letters.

Using this process, 48 changes were made to "Watercolor Cat," Mecum says, from the placement and size of images to adding a line of ladybugs along the bottom of a page.

The book was released last week, and Chun has insisted on attending all the book signings, propped in her wheelchair, her ventilator pumping away and Armitage speaking her words.

"It's never a small vision with Peggy," daughter-in-law Kimi Chun says. "It's always a huge one."

Speaking of huge: Chun's current project is a mosaic of Father Damien made up of thousands of half-inch paper squares painted under Chun's direction by students at Holy Trinity School.

Chun uses her spelling board to specify color combinations for batches of squares -- 50 color formulas so far. The students have painted some 16,000 squares, with thousands more to go.

The job of assembling the pieces falls to Magdalena Hawajska, a painter from Poland who works in art restoration at the Academy of Fine Art in Krakow. She met Chun five years ago during a visit to Hawaii, and through painting and sharing time together, they became fast friends.

Hawajska is not quite clear how she'll translate Chun's vision, but is confident that she can. "She has a whole image in her mind, and she is giving us direction," Hawajska says.

Hawajska got the project started 18 months ago, assuming that another artist could help finish it. But Mecum called two weeks ago and said they needed her help to complete the mosaic by December. Hawajska was preparing an exhibition of her own work in England, which has gone on without her as she returned to see this project through.

So far, all that's been assembled is a line of tiles around Damien's head, she says. "I just believe it is going to happen."

Chun, 61, was diagnosed in 2002 with ALS, the disease that claimed her grandfather, mother and twin sister. In a year, Kimi Chun says, her right hand was motionless; a year after that, her left hand was stilled. For another year she could paint with her teeth, then for one more year with a computer program that read her eye movements.

The original prognosis was that she could live up to three years with ALS, but she's rounding on five now. "It's so important for her health and her state of mind to still do something creative," her daughter-in-law says. "Creating is living for her."

When Mecum began working with Chun, "I thought I was going to meet a heartbroken artist who had just lost her painter's hand."

Instead she found someone overjoyed to find what she could do with her left.

"She said, 'I love this hand,' and she kissed her left arm all the way up to her shoulder."

Chun prepared for each loss of function, for example, preparing a special brush she could hold with her teeth in anticipation of losing control of her left hand. When it became clear she'd have to go on a ventilator to aid her breathing and would no longer be able to speak, she set about numbering all her paints so she could select colors by number, Mecum says. "She was always thinking ahead: 'How can I keep painting?'"

In fact, Mecum says, it's hard to think of Chun in terms of loss. "Once you really know Peggy, it's OK, everything that's happened. She has a bigger life than those of us who walk around. We laugh that we have to keep up with Peggy. We feel like couch potatoes around Peggy. She teaches us to live in the second."

As the writer of "Watercolor Cat," Mecum thought she'd make quick work of the project, only to find it took four years. "I couldn't understand why I couldn't just write this book and finish it in a week or a month. I know now it's because Peggy had not lived the whole story."

With the book complete, does this mean they've reached the final chapter?

Well, the Damien mosaic must be finished first, Mecum notes, and even that's not necessarily the end. "Peggy said, 'After Damien there's St. Francis,' and I said, 'We could go through the whole canon of saints.'"

But recently one of Mecum's students put the question directly to Chun, asking how much longer she thought she'd live.

"Peggy said, 'Oh, honey, if I make it beyond Christmas, I am going to be so thankful.'"

It was the first time Mecum knew her to speak in those terms, and it saddened her, but only for a moment. Sadness doesn't linger in Chun's world. "That troubled me but it shouldn't," Mecum says firmly, "because what's so bad about going straight to heaven?"