Band of sisters takes note of serious disease

It's not unique for a community to come together in support of a member who's ill; it's even become commonplace to hold benefits to raise money for treatment.

What the Sisters of St. Joseph of Carondelet will offer on April 20, however, is a bit more unusual: Because of Sister Mary Rose Noonan's battle with scleroderma, 11 members of her religious order formed a band -- and they will perform a medley of classic songs to raise money for scleroderma research.

The "Provincial House Ensemble's" biggest performance to date will be boosted by speakers, comedians and a professional musician -- all Sisters of St. Joseph.

Supporters

"It's such an amazing story of community support," boasted Sister Mary Rose.

The band "is sort of a novelty. People say, 'Are you going to go on the road?' But we're afraid that might make it stressful."

Stress is the last thing she or her fellow sisters want. For Sister Mary Rose, playing the trombone as a member of the ensemble is focused on keeping her lung power up and having fun.

Symptoms

A native of Utica, Sister Mary Rose started her time in religious life in the 1970s as a high-school teacher, first at Catholic Central High in Troy, then in the Syracuse Diocese.

Talents in research and writing led her to start development offices for the St. Joseph sisters; in 1989, she moved to their Provincial House in Latham to work there full-time, eventually becoming communications director.

It was also in the 1980s that she started to notice some odd symptoms: Her hands were always cold; she had trouble swallowing. Though they seemed random, a sharp doctor caught the connection, and a biopsy of her esophagus showed that she had the connective tissue disease called scleroderma.

'Deadly'?

"I felt I was in the prime of my religious life," the nun recalled. "I went to the library and looked up [scleroderma], and my heart sank. A lot of the literature had not been updated, and everything described it as 'fatal' or 'deadly.'"

Scleroderma, an autoimmune disease, literally translates as "hard skin." For unknown reasons, the body's immune system starts to form scar tissue in the skin and organs, making them thicken and harden. That most often affects the extremities and face.

Scleroderma patients can also have severe heartburn from a poorly functioning esophagus. Depending on the severity of the disease, a host of other symptoms can develop, from inflamed lungs to organ failure.

'Scary year'

For Sister Mary Rose, an ill-advised initial surgery to move her stomach upwards led to more trouble swallowing, so she underwent a second surgery to reverse it.

For a year, she couldn't eat by mouth; family and friends tried to keep her spirits up by buying milkshakes she could "drink" through a tube.

The young sister found that religious life took on a whole new meaning during that time.

"It was a very scary year," she said. "I had to put my faith into practice. I also began to realize how wonderful community is -- and community support. It was a major faith awakening for me; God put so many people in my life."

Trombonist

The first few years after diagnosis are often the roughest for scleroderma patients. Sister Mary Rose struggled through kidney failure; her fingers and toes lost circulation and began being amputated, one by one.

Then she was diagnosed with fibrosis (scarring) of the lungs. Her doctor advised she swim, go to respiratory therapy or take up a wind instrument to exercise her lungs.

"I was not musical at all," Sister Mary Rose chuckled. She also had the complication of not having enough fingers left to play some instruments. But a sister who was a musician suggested the trombone, since she only needed to move the slide to change notes.

Harmony

That sounded more fun than the other options, so Sister Mary Rose rented a trombone and began taking lessons.

When other sisters heard, they offered to play along:

* first, Sister Joan Geannelis, who brought her clarinet;

* then Sisters Margaret Totten and Marguerite Donovan, who played keyboards;

* Sister Marion Honors had given her violin away years before, but she heard the group practicing and decided to get another one so she could join;

* another sister remarked that the group needed someone to write out musical parts for them, so she did that;

* Sister Rose Regina Smith, who was in her 70s, hadn't played the flute since high school, but she took it up again;

* Sister Elizabeth Emery moved to the Provincial House from Utica, bringing along her tuba; and

* Sister Esther Thomas Sexton noted that the group didn't need another keyboardist, so she would play the xylophone and triangle.

All together now

By the time newcomer Sister Marianne Comfort joined the group with her flute, it was an official "ensemble," playing at gatherings of sisters and developing a repertoire.

"Our signature song is, 'Hello, Dolly,'" said Sister Mary Rose -- who has now been playing the trombone for a decade and is breathing fine.

Having lost all of her toes and seven fingers, however, she remains a passionate advocate for scleroderma research. When her fellow sisters agreed to hold a benefit this month for the Tri-State Chapter of the Scleroderma Foundation, she was ecstatic.

"It doesn't get much better than this," Sister Mary Rose remarked.

Learn with fun

Although there will be some discussion of scleroderma, the benefit "is not an education day; it's an entertainment day to raise funds," the nun said.

The event is also being held in memory of two other Sisters of St. Joseph who died of the disease: one from Los Angeles and Sister Marie James Kearns of Albany.

The musical ensemble is hoping to draw a big crowd. Sister Mary Rose listed some of the songs on the bill: "Ain't We Got Fun;" "Edelweiss" and "It's a Small World After All."

"I like to play anything people can recognize when I'm done," she noted.

(Sister Mary Rose uses voice-activated computer software to write newsletters for her work as director of communications. She said that it's important for Sisters of St. Joseph to stay in touch with the order's mission and ministries because "they're our best vocation directors." "Sisters for Scleroderma Research" will be held April 20, 3-5 p.m., at the Carondelet Hospitality Center at St. Joseph's Provincial House, Latham. The requested donation is $10, which includes dessert. Other performers will be speaker and humorist Sister Anne Bryan Smollin; pianist Sister Patricia St. John; and "comics" Sisters Katherine Arseneau, Fran Eustace and Patricia Houlihan. Call 783-3604 for information. For more information on scleroderma, go to www.scleroderma.org.)

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