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Artist expresses patience in coping with disability


Consider one day in the life of artist Karen Wheeler.

It takes her at least four hours with assistance to move a few feet from her bed to her workplace inside her Henderson home. At 57, she lives with the debilitating effects of spinal muscular atrophy, a form of muscular dystrophy. Like a serial thief, it has robbed Wheeler of nearly everything but her indefatigable spirit, artist’s soul and sense of humor.

“About 15 years ago, it might have taken an hour and a half,” she says. “But as time goes on my disability gets more involved. It just takes more time.”

Her body is like the Greek government. Almost nothing works the way it’s supposed to. And the physical debts keep mounting. Legs and arms are afterthoughts. Sitting up is a daunting struggle.

Each day gives her every opportunity to quit. She responds by giving it art.

Her work reflects not only her hard-won skill with watercolor, but her great patience, a certain tender tenacity and ability to focus on fine details.

As day melts into night, Wheeler keeps working, often until the predawn hours.

“My art is an expression of independence and freedom,” she says. “Because anything I can’t do physically, I can do it in art.”

Her watercolor of musician Todd Kerns will appear in the jewel box of his new CD. It’s set to debut June 2. Partial proceeds of the CD go to the Muscular Dystrophy Association. (Although she’s redesigning her website, you can find more of her art and thoughts at karenwheeler.com, gohityourself.com, and Artist Karen Wheeler on Facebook.)

Picasso was known to produce several paintings in a single day. Wheeler once spent 11 months on a single watercolor. She slaved over every stroke.

“And it doesn’t look very big,” she says, laughing for the first of several times during our interview. “It’s more what’s involved. It’s pretty tedious.”

Her hands unable to control larger brushes and bolder strokes, she concentrates on single elements and colors, combining them in layers and fitting them together almost like jigsaw puzzle pieces. It’s a technique born of necessity.

Holding a pen, for instance, is unwieldy and uncomfortable. She no longer sketches pen-and-ink drawings. But she hasn’t let it prevent her from creating art.

“My dexterity has gotten worse, and it gets worse all the time,” she says. “But I can still feed myself. I can still paint.”

Rather than lamenting her body’s deficits, she takes what remains and somehow makes it work.

It’s been that way from the start.

As a baby, she didn’t sit up like other youngsters. Instead of crawling in the usual way, she sort of scooted and rolled. A doctor diagnosed her with muscular dystrophy and told her parents she might last a few more months.

They buried that doctor years ago. Karen Wheeler turns 58 in July.

“He told my parents my life expectancy was one year,” she says, laughing again. “Actually, I outlived him.”

Because she couldn’t go out and play like other kids, her mother kept her busy with pencil and paper. She began to sketch what she saw.

A Southern California native, she grew up in a generation when kids with disabilities were a segregated minority. The physically, behaviorally and mentally challenged were lumped together in classrooms with few educational expectations. She eventually spent half days at Saddleback High, where she again had to lobby for access to classes that ambulatory teenagers took for granted. She managed to push her way into mainstream courses, and excelled. She even passed a driver’s education class although she admits, “I’ve never driven, just my chair.”

After high school, she earned bachelor and master of arts degrees from California State University, Fullerton. Not that anyone expected her to get that far.

“I had a teacher there tell me he was pretty sure I could get a B.A., but that I couldn’t get an M.A.,” she recalls. “That’s when I knew I was going to get it. I’m stubborn that way. ... I’ve always had, I guess, a stubborn streak. If someone said I couldn’t do something, I’d find another way to do it, work around them, always persevere, go forward, even if I have to go diagonally first.”

And she never quits. Wheeler’s friend Lynn McMullan is awed by the woman’s courage. McMullan observes, “She smiles through it all. I know everyday stuff is unimaginably tough for her. Her art is a gift that she was blessed with, but to do what she does with the cards she has been dealt is miraculous. She is a beautiful soul. I think she makes us all better for being around her.”

Rushing from place to place is out of the question. Like her work, her day is lived meticulously. She seems almost nymph-like in her battery-powered wheelchair. She moves its joystick with her thumb and positions herself in front of a watercolor-in-progress.

Then she takes the most from the least and manages to create beauty from pigment and water.

Although those who know her story think she’s amazing, it’s just another day in Karen Wheeler’s life.

John L. Smith’s column appears Sunday, Tuesday, Wednesday and Friday. Email him at jsmith@reviewjournal.com or call 702-383-0295. Follow him on Twitter @jlnevadasmith.