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Harpist plucks tune of hope

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Jennene Stanley doesn't waste time fretting about adversity.

As her small gnarled hands fly over the strings of a harp, Stanley's thoughts are focused on her music - not the rheumatoid arthritis that has racked her body since she was 18 months old.Her old adversaries, pain and physical limitation, are forced to take a back seat as the 32-year-old woman with artificial wrists and knuckle joints evokes seamless melodies from one of the world's most demanding instruments.

Watching her, you would never suspect this determined Oklahoman has undergone two dozen different surgeries to battle a degenerative disease that she knows eventually will deprive her of the use of her hands and end her career as a professional harpist.

And you can save those polite expressions of sympathy and trite tributes to human courage for someone else, thank you.

Stanley is far too busy to listen or care, as she uses her spare time to painstakingly fashion bolts of elegant cloth and piles of artificial pearls and gems into an elaborate costume from the Elizabethan period.

Small wonder that Stanley is one of 50 people who will be honored in November by the Arthritis Foundation of America as a "Hero Overcoming Arthritis" at a national convention in Atlanta.

She will be in Salt Lake City on Sunday and Monday for the filming of a segment on a not-for-profit documentary that is being made about her extraordinary life.

Ostensibly, Stanley is coming to Utah to pick up a rental harp to replace her old instrument that literally fell apart seven months ago. Stanley also needs a harp to maintain her performing career and to practice the piece she has been asked to perform at the convention.

But the scene that will be played out in a Holladay home Monday morning is not in the documentary's script. Stanley suddenly will find she's an unsuspecting player in a human drama with a surprise ending.

Instead of the old and barely playable harp she plans to rent, Stanley's friends and admirers intend to give her a state-of-the-art Camac harp from France valued at well over $20,000.

And the only strings attached will be those on the harp.

Debbie Wheaton, an independent California producer who is filming the documentary on Stanley's life, has spearheaded a nationwide fund-raising campaign to raise money for the instrument.

The harp is being provided at cost through Tina Brubaker of Brubakers At The Harp, a local company that arranged to obtain the instrument from Camac at an unusually deep discount.

It features an electronic pickup on each string, which eventually will allow Jennene to hook up to computers or synthesizer modules.

Documentary footage of the donation will be filmed in Brubaker's home, where Stanley spent time in May looking at rental harps.

Wheaton - the mother and publicity agent of actor Wil Wheaton, who starred as Wesley Crusher in "Star Trek: The Next Generation" - said she became acquainted with Stanley over the Internet.

"Our friendship grew through phone conversations and e-mail messages," she said. "Jenn is a huge fan of the series. . . . We finally met face-to-face in the parking lot at a Star Trek event.

"Jennene is a truly remarkable person who inspires everyone she meets," noted Wheaton, who decided to share her new friend with the world by making a documentary. "It will be a living testimony to the powerful nature of a life lived to the fullest."

Stanley, who lives in Norman, Okla., with her husband Brad and their 3-year-old son, works part-time as a Southwest Airlines reservation agent but makes much of her income playing for weddings.

She also plans on branching out into motivational speaking and is counting on having a harp to help deliver her message of hard work, hope and personal honesty.

And if there's one thing she hates, it's the mamby-pamby trend towards discussing disabled people in euphemistic terms.

"In this world of political correctness, we're whitewashing things," Stanley said. "I don't like being called physically challenged.

"I prefer to say I'm disabled or have a disability, and I don't mind it if people call me handicapped," she added. "But one thing I won't let anybody call me is crippled - I broke a kid's nose in the seventh grade because he called me that. With a glockenspiel."

Jennene also hates being fussed over and held up as an example.

"To me, there was never a choice" of being another helpless victim of a debilitating disease, she said. "I could either get a life or sit at home and be miserable.

"Fortunately, I grew up in a home where staying home was never an option," Stanley said. "My family refused to wrap me in gauze and stick me on a shelf."

Despite the difficulties of an endless string of surgeries to correct deformity or extend her range of motion, she learned to play piano and violin.

She took up the harp while earning a history degree in college with a concentration in music history and harp performance.

She also learned to make the elaborate Elizabethan-era costumes that she wears to Trekkie conventions or meetings of the Society for Creative Anachronism.

Her advice to arthritis sufferers and other disabled people is tough but simple: Confront life head-on, get an education and find a job.

"Just grit your teeth and do it," Jennene said. "It's hard, but it's that or sit at home and watch sitcoms and let your brain rot.

"I have a real problem with people who, because they are disabled, expect society to take care of them," she added.

Wheaton called surgery "a way of life" for Stanley and said the harpist soon faces complete replacements of her artificial wrists and knuckle joints, which gradually have been breaking down.

"I marvel at her ingenuity for accomplishing things most people take for granted like brushing her hair and taking caps off bottles," said Wheaton. "She pushes through the pain and limitation of her disease with a pride and determination that humble me.

"To her, there's nothing remarkable about it," she added. "But Jennene is the most courageous person I've ever met."