To call Sue just our choir director is an unforgivable understatement. Her role with the choir extended from babysitter to maestra, hitting most points in between. She asked so little and put up with so much. I have seen her cry during our rehearsals, at times moved by the music, at other times fed up with our bickering. As Director of Music, hers was the task of organizing and ordering our musical programs, selecting music, contacting the choir and other performers, and myriad other little things. She even attended the language class for a time to help manage Welsh lyrics.

Nancy Noyes

From the Denver Post special "A Colorado Life" Jan. 28, 2001
with permission of the author James Sheeler

For the bulk of her life, Sue Jones didn't know the name of the disease - - the disease that doctors once told her would keep her from walking or having children. She didn't know what the disease was called when she left the hospital, when she went back to school and graduated with honors, or when she played organ, conducted choirs and raised two sons. When she finally found out the name of the disease that would kill her, she made sure as many people as possible wouldn't forget it.

Janet Sue Jones died Dec. 14 of a heart attack resulting from the effects of lupus. She was 62.

Musical upbringing:
From the time she was born, Sue's family made its own background music. Her mother taught piano. Her older sister was a music teacher. As she learned to walk, she learned to play.

She was born in Goodland, Kan., but the family soon moved to Beatrice, Neb., where she grew up around her father's grocery store, practicing music during most of her spare time. As a freshman entering Nebraska Wesleyan University, only one clarinetist ranked above her.

"The really wild part of the story begins at Easter vacation, when the band would tour all around the state," her husband says. "The last night of the tour in Fremont, Neb., she fainted and fell off her chair in the middle of the concert and was taken to a hospital in Lincoln, where she was diagnosed with polio, which was odd because she had had the polio vaccine." That was the first of many times Sue was told she would likely die soon. They said she would never walk, that she would never have children.

"That was Sue," Berwyn Jones says. "You could tell her she couldn't do something, and she would go do it." For the rest of her life, she would spend weeks at a time in hospitals as doctors tried to figure out what was wrong, poking her, prodding her and asking barrages of technical medical questions. After a while, she began quizzing them, too.
"How many flats in the key of E Flat?" she would ask.
"Which came first - Bach, Beethoven or Brahms?"

Knowing the enemy:
When they finally put a name to her disease in the mid-1970s, doctors didn't have many answers for her. Two decades later, they still don't. Nobody knows what causes lupus, which mostly affects young women. There is no cure. Berwyn Jones describes the auto-immune disease as his wife would - so anyone could understand.

"Lupus attacks your insides like your immune system would attack a cut," he says. "You know how a cut can get all red and swollen? Well, Sue's insides were all red and swollen."

Though most of the 1.4 million Americans with lupus live full lifespans and relatively normal lives, Sue Jones' disease was the most severe form, which attacked her organs and left her in frequent - sometimes excruciating - pain. Along with the disease, she had to put up with the side-effects of medication - effects that included weight fluctuations and her hair falling out in clumps.

Instead of sitting back, she quickly joined the Lupus Foundation in Georgia, where the couple lived when she was diagnosed. When they moved to Colorado in the early 1980s, she began writing letters for the tiny lupus support group here, and was soon named president.

"It was then a little nickel-and-dime nonprofit, squeezing pennies. She went out and recruited people and really built the group into the Colorado Lupus Foundation," says Marian Fuller, who met Jones through the group and later became a good friend. "It was quite an achievement for a small nonprofit with a specialized condition. There was no money, no public relations campaign, no celebrity spokesperson." Soon, the group had office space and volunteers and a board of directors (some made up of Jones' neighbors). When Jones realized that most lupus patients couldn't receive Social Security disability benefits, she helped organize a letter-writing campaign that convinced the government to change the requirements.

"They got all these thousands of letters writing about the lupus regulations, and sure enough, it was revised," Fuller says. "And it was all from Sue. It's all from Sue." At the same time she worked so hard, she suffered two heart attacks. She continued to try new therapies and medications, and watched them all fail.

"I always remember Sue coming into the office coming in with rather significant lupus, not responding (to treatment) and her major concern was other patients with lupus, and how they could be helped," says Dr. Michael Schiff, medical director at the Denver Arthritis Clinical Research Unit. "She had the mental attitude that she was going to lick this." When he thinks about their visits, the doctor still marvels at her outlook.
"If we knew what it was," Schiff says of her attitude, "we would bottle it and try to get FDA approval."

New voices:
Inside their home, Berwyn Jones holds up his pinky finger.
"Sue had about this much Welsh blood, but the minute we got to Wales, she said, 'This is really eerie. I feel like I've come home.'

She was very much taken by the wonderful Welsh harmony, the singing and the compositions." In Colorado, she signed on as the choir director for the Colorado Welsh Society, building it from a few voices to dozens. Along with her other work with the lupus groups, she also found time to conduct the choir at the Church of the Transfiguration Episcopal Church in Evergreen, and volunteer with the Colorado Symphony.

As the disease progressed, she continued to conduct the Welsh choir, even as her own voice went from a tenor to a baritone due to the increasing effects of the disease and medication.

"It was a way she expressed herself, and it was a release," says Jackie Siegfried, who sang in the Welsh choir and became Jones' close friend. "It was always good therapy for her to be planning ahead. To plan the next program. I think it was an expression of all that she felt." The last choir performance she directed was at the memorial service of a friend who died less than a month before she would.

"Here she was (at the funeral service) with seven collapsed vertebrae, and she stood there for 20 minutes conducting the choir," her husband says. "Three weeks later we were singing the same songs for her."

As he sits among the embroidered flowers, Berwyn Jones plays back the hymns in his head and thinks back to the times when he would stand near his wife, holding his trumpet, waiting for her to come in.

By Jim Sheeler

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