Paralyzed artist's digital works convey her humor, lively spirit

By ANGELA PATTERSON • Staff Writer • June 2, 2008



In the Worsham household, there's an almost-constant beeping sound.

And it's not a broken smoke detector or a neglected cell phone.

It's how Erin Brady Worsham talks.

The series of beeps and flashes light up her communication device, one of the only ways she has to converse with the world.

Since her diagnosis in 1994, amyotrophic lateral sclerosis, or Lou Gehrig's disease, has robbed the former actress of all muscle control and movement.

But through her shining blue eyes, the one body part she can control, you can see there's one thing the disease has not taken from her: a fierce intelligence. And thanks to the Internet, Worsham can speak her mind.

The computer also allows her to pursue her passion — art. For several years, Worsham has used the Microsoft Paint program to create digital paintings that remarkably resemble the fabric art she created before the diagnosis.

Her work, now on display at the Frist Center for the Visual Arts as part of an exhibit of Tennessee artists with disabilities, is another way to share all the things she can't say. Using a virtual canvas and paint, Worsham, 50, can express the lively sense of humor and adventuresome spirit that her body will no longer let her convey.

1994 brings high, low
Over the course of several weeks in 1994, Erin Brady Worsham learned two things: she had ALS, and she was pregnant.

She was a part-time student at Watkins College of Art & Design, but on the day she learned of her diagnosis, she lost all interest in art. After all, why create art when soon you won't be able to hold a brush?

But it was the news of her pregnancy that kept her from deep despair. Despite her condition, she never considered giving up the baby; her husband, Curry, and this baby were the two things keeping her going.

"Our son, Daniel, will be 13 in June," Erin said. "He was an incredible gift from God. I don't believe in coincidence.

"The moment I knew I was pregnant I stopped thinking about death. My pregnancy was one of the happiest times in my life.

"Don't get me wrong, I wasn't Pollyanna about this. There were some emotionally raw moments in the middle of the night, when I wrestled with God about why I was being given this gift if it was being taken away.

"It was the ultimate life-death dichotomy."

And she spent the next five years focusing on her son's growth rather than her decline. Most times, Daniel was belted onto her lap in her scooter, and later, her wheelchair.

Face inspired her
Computer software led Erin back to art.

Her husband installed software that allowed her communication device to work with the computer. Now, using her forehead muscles to activate a switch that moves the cursor on the screen, Erin could use all the computer had to offer, including Microsoft Paint.

At first, she wasn't interested in creating art, but after she drew that first face, something ignited.

Curry said the idea for each painting is in her head. And since it takes hours upon hours to create a piece, each stroke of the virtual brush is planned, purposeful.

"(Being an artist) is her identity," Curry said. "Without it, she's just a person with a disability. But with Microsoft Paint, it's just the same for her as it is for anyone else doing digital art."

Erin's room is more like an art gallery, all walls adorned with frames showcasing her art. The almost-geometric qualities of her work are a direct influence of her mother, who was also an artist, but the context and meaning of these pieces is all her.

The collective pieces read like Erin's biography. They show who she is, what she's done, and what she still hopes to do.

"Erin creates art that both responds to people's reaction to her disability and that demonstrates that her life remains full of fantastic possibilities," said Susan Edwards, executive director of the Frist Center.

"The self-portrait 'Go Fast' shows her vision of how adaptive skiing looks and feels, while 'It's a Long, Long Road' illustrates the potential for greatness in each of us."

Focus is a gift
Having ALS may have hindered Erin in many ways, but when it comes to the ability to focus, it's been a blessing in disguise.

"Can you imagine a world where everyone could spend their time doing something they truly loved without any distractions?" Erin said. "Well, that's how it is for me living with ALS. I can devote myself entirely to my art and writing, because I'm not called away to cook dinner, clean house, work, garden, shop, etc.

"I have loved those distractions during my life, but for a born procrastinator, this focus has been a gift."

And the family's positive attitude is inspiring. Curry said while the first months after the diagnosis were difficult, they've enjoyed meeting the challenges this disease presents, and he believes Erin takes pleasure in finding a way to create art.

And although Erin says she now has a normal life expectancy because of her ventilator, she hopes that after she's gone, Daniel will learn certain things about his mother from her work.

"I have missed laughing with Daniel, but I hope he will see my sense of humor in much of my work," Erin said.

"Someday when I'm gone I'd like Daniel to know I was a woman of faith and determination, who wanted him to use his gifts to be the very best person he can be."

Contact Angela Patterson at 259-8287 or apatterson@tennessean.com.

http://www.tennessean.com/apps/pbcs....806020370/1006


Facts about ALS
• Amyotrophic lateral sclerosis, often referred to as "Lou Gehrig's Disease" because of the famous baseball player who had it, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons that reach from the brain to the spinal cord to the muscles degenerate and die off. When the motor neurons die, the brain's ability to control muscle movement is lost. Patients in the later stages of the disease may become totally paralyzed.
• Approximately 5,600 people in the United States are diagnosed with ALS each year. The incidence of ALS (two per 100,000 people) is five times higher than Huntington's disease and about equal to multiple sclerosis. It is estimated that as many as 30,000 Americans may have the disease at any given time.
• Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more. More than half of all patients live more than three years after diagnosis.
• About 20 percent of people with ALS live five years or more and up to 10 percent will survive more than 10 years and five percent will live 20 years. There are people in whom ALS has stopped progressing and a small number of people in whom the symptoms of ALS reversed.

INFORMATION PROVIDED BY THE ALS ASSOCIATION