Erin Brady Worsham, whose artwork appears on our cover, was 36, working as an actress, and attending the Watkins Art Institute in Nashville, Tennessee, when she started experiencing foot drop and muscle weakness in her lower legs. After visiting a neurologist, she learned she had amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease—a progressive neurodegenerative disease affecting voluntary muscle movement. She was told she had three to five years to live. Although she says that on that day she "lost the will to do art," the following day she was given news that gave her the will to live—after six years of trying, she was pregnant.
Although her neurologist discouraged the pregnancy, Worsham found a specialist who supported her choice. In June 1995, she gave birth to her son, Daniel.
By 1997, Worsham was mostly paralyzed and living with a feeding tube and home ventilator. But determined to parent her son, she's already lived longer than most people with this disease. Now 52, she resides with Daniel and her husband, Curry, in East Nashville.
"The doctors just say to keep doing what we're doing because it's obviously working," she says. "That's good to hear."
Despite the paralyzing effects of ALS, Worsham found a way to continue her art: her husband installed a software program on her computer that allows a communication device to interface with the computer. Although she can no longer hold a brush or pencil, a small wire taped across her brow enables her to paint by sensing the movement of the muscles above her eyes. It takes her hundreds of hours to patiently create her internationally acclaimed art.
"I really don't like people to know much about my art before they see it, because they tend to get hung up on the time-consuming way it's made and not the work itself. I want people to bring their own stories to my work," she says in a YouTube video of her story (see http://www.youtube.com/watch?v=o9ndNZ-r4-U).
The artwork on our cover, called Go Fast, reflects Worsham's love for competitive skiing. Her interest in the sport was sparked while watching the 2006 Winter Olympics. "I never thought someone like me could participate," she says. "Go Fast is my daydream of how it might be."
Her dream became a reality when, while researching the U.S. Ski Team, she discovered the Turtle Ridge Foundation, a nonprofit adaptive program in New Hampshire founded by Olympic gold medalist Bode Miller. The program, which provides skis and equipment to children and adults with disabilities, allowed Worsham to experience the slopes just as she illustrated them in Go Fast—speeding down a mountain with the cool air blowing on her face.
Much of Worsham's artwork reflects her struggles with the stigma surrounding her disease. Although she says that her home nurses have been indispensible and that good ventilator nurses are "real treasures," she adds that some of the nurses know little or nothing about ALS when they arrive. Her family has to explain that she's "all there," and that she can hear and feel everything.
Although Worsham says she can't speak for all people with disabilities, she wants nurses to know the importance of being treated with dignity; the difference it makes when caregivers stand where she can see them, look her in the eye, and speak directly to her. "Someone may answer on my behalf," she says, "but it feels mighty nice not to be referred to as 'she' when I'm in the room!"
For more information on nursing and caring for patients with home ventilators, see "Home Mechanical Ventilation" by Sandra L. Stuban (May 2010).—Alison Bulman, senior editorial coordinator