IP Editor's note: This story, courtesy of the Associated Press and KnoxNews, is primarily about the state of health care benefits in Tennessee and how they affect Erin Brady Worsham and her family. They are used in this story as an example of the plight that thousands of people face, not only in Tennessee, but across the country. The issue is a crucial one. Even though this issue probably does not affect you now, there is no escaping its impact on you sooner or later. And take it from me, we never know when "later" suddenly becomes Now.

But in the midst of this very important health care and legislative concern is a remarkable artist. Her ability for unique artistic vision and expression moves me to focus on her incredible talent. It's my hope that you will appreciate what a remarkable soul Ms. Worsham is and be as amazed and delighted with her art as I have become. --M.R.

NASHVILLE - Erin Brady Worsham, a 44-year-old artist paralyzed by disease, is drawing a squiggly line on a computer screen by arching her dark brown eyebrows.

A tiny wire taped above her eyebrows runs to a keyboard on her wheelchair and allows her to manipulate the image on the screen.

The process is excruciatingly slow, but Worsham is patient. The artist, who can neither move nor breathe on her own, will spend about 250 hours creating another of the colorful, bold modern illustrations that are gaining national attention.

Worsham - a mother, wife and quadriplegic - had spent her waking days and nights at the computer, secure in the thought that she could continue her life's work in her home until her body no longer will let her. Until now.

The state-subsidized private nursing care that takes over while her husband and primary caregiver, Curry, sleeps at night is scheduled to end as part of cuts in the Tenn-Care health coverage program for the poor, uninsured and disabled. When the funding stops, it will leave the family without the around-the-clock care Worsham needs.

"It would drastically change our lives," Curry Worsham said. "We would do everything we could before we would resort to the nursing-home option, but that's something that always looms there."

Worsham's fear is that the ventilator she uses to breathe will stop suddenly in the night, and no one will hear her gasps for air.

In whispered, slurred words that her husband strains to understand and then repeats aloud like a game of charades, she says, "It's only a matter of time before my husband is so exhausted he doesn't hear my ventilator alarm."

Worsham was diagnosed with amyotrophic lateral sclerosis in 1994 after she noticed a weakness in the muscles in her feet and ankles that caused her to plod around the house with a thud.

Worsham's Big Wheels Keep on Turnin', treats us to a surprising perspective

The news was crushing. Besides being a professional artist, she had been a dancer and actress in regional and dinner theaters. Framed photos of her in "You're a Good Man, Charlie Brown," "Oklahoma!" and "Fiddler on the Roof" line the walls of her home.

ALS, also known as Lou Gehrig's disease for the New York Yankees first baseman who suffered from it, attacks nerve cells in the brain and spinal cord, progressively stripping the brain's ability to control muscle movement. In most patients, the body becomes paralyzed but the mind stays sharp.

"I mourned every time something disappeared or went away," Worsham said of her ability to move her legs, arms, toes and fingers.

Most of all, she dreaded the day she would no longer be able to breathe on her own. At first she vowed she would rather die.

But a day after her diagnosis, after six years of trying to have a child, she conceived what she calls a "miracle baby" and wanted to live more than ever. She's been on a ventilator since Thanksgiving 1997.

In Worsham's Mind, Body, Spirit her wheelchair nearly fades away into a vibrant background of color and form -- just as it should.

"I have stopped questioning why this happened. I just want to live and do my work," she said.

Her illustrations, which she conceptualizes in her mind then draws and paints on the computer, have been displayed in hospitals, universities, publications and at festivals. The Society of the Arts in Healthcare selected them for a traveling exhibit that will appear in hospitals around the country.

With few places left to borrow money, the family is teetering on the edge of financial collapse and can't afford the kind of private duty nursing care Worsham needs.

Curry Worsham quit his sales job years ago to take care of his wife and son, 7-year-old Daniel. The family survives on Social Security, credit cards, loans, help from relatives and commissions from Worsham's artwork.

The nurse comes to their home five nights a week, from 11 p.m. to 11 a.m., giving him time to rest. A sitter stays the other two nights.

The nursing service was supposed to end Jan. 1 because of cuts in the state's $5.3 billion expanded Medicaid program known as TennCare. The state wants to remove 200,000 people from the rolls and split benefits into two parts.

The uncertainty is painful for the Worshams, who have written letters to the governor and to newspapers. "It's a source of great trepidation that this could go away," Curry Worsham said. "The sooner it gets fixed, the better." The irony, he said, is that nursing-home care - which his wife would qualify for if she lost private nursing care - is more expensive than what she has been receiving.

"It makes no sense," he said. "Her quality of life and quality of care is much better here. She has been able to have a remarkably full life."

 

Editor's Note: Erin Brady Worsham wrote and illusrated an article for MDA's Quest Magazine in June 2001 called "LIFE ON THE VENT: The Other Side of the Mountain"  You can read more about Erin and her art at: http://www.societyartshealthcare.org/exhibit/ and http://express.anne-t.com/gallerin.htm .