Advertisement

You've gotta love her, she's a fighter

September 01, 2013

For 15 years, Tori Anderson’s lilting voice rang through the region, as Tori Anderson & The Possum Holler Band became a staple on the Quad-State bluegrass scene. Country music fans also know her as the cheerful and witty daytime personality on WAYZ radio in Greencastle, Pa.

What her fans might not know is what a struggle it can be for her to so much as rise from bed and make the morning commute from her Hancock home to the station.

It becomes a test of wills: Tori on one side, scleroderma on the other. Tori usually wins, resisting the urge to eat some pain pills and stay in bed on days when every move can be agony, the disease making it seem as if her skin is about to rip apart.

Imagine if your skin didn’t stretch, but had instead hardened into a mat of rigid plastic. You can figure what it would feel like to bend your elbow, tie your shoes or raise your hand.

About five years ago, Tori was lifting her arm over her head when she was struck with a sensation that her skin was ripping apart.

Curiously, she had an inkling what might be wrong. A few years prior, she’d watched the ABC-TV movie “For Hope,” which chronicled the struggle of Gay Saget — sister of Bob Saget, he of “America’s Funniest Home Videos” fame — who died at age 42 after a five-year fight against scleroderma.

The disease is not common, and Tori had trouble finding a doctor who would give her the time of day. Finally, on Valentine’s Day 2008, she got the diagnosis.

“I felt I had it, and I felt it was the type I didn’t want to have,” she said this week.

The version of scleroderma that attacks only the skin is bad enough, but Tori has a less common systemic type that also attacks internal organs, turning them into brittle knots with the same ruthless progression.

Modern medicine can spot-treat some of the symptoms, but has no cure. And having little in the way of a constituency — an estimated 300,000 people have it nationwide — it lacks the funding and research that flows into cancers and heart ailments.

Tori had a choice: Huddle up in a defensive position and brace for the worst, or take it to the disease with the same vigor with which it was attacking her. Those who know Tori were not surprised by her choice.

For three more years, she sang with Possum Holler, raising awareness and money for scleroderma research. But the notes became ever harder to hit, as the skin constricted around her mouth. By 2011, it was too much to keep touring and maintain her radio show, so the band announced its farewell tour.

But as she scaled back her music, she stepped up her fight against the disease.

Wearing gloves and long sleeves in August, Tori’s face is lovely as ever, her eyes bright and determined and her brilliant smile still lifting spirits of friends and strangers alike. Casual passers-by would not know there is something terribly wrong.

“I knew I’d rather go out on a good note than have people saying, “Oh, that poor little thing,” she said.

WAYZ has strongly backed Tori, letting her air her message. And her public awareness campaign has helped a number of people in the Tri-State area diagnose the mysterious ailment.

There are days, Tori says, when it feels as though her arm weighs 100 pounds, and she acknowledges that “it gets harder to fight.”

Yet, fight she does. Next Sunday, Sept. 8, she will host her third “Walk With Tori” at Doub’s Woods Park in Hagerstown to benefit scleroderma research. Her fundraisers have already raised $75,000 and underwritten two medical studies at the University of Pittsburgh Scleroderma Center.

The walk this year will be poignant; two members of the original walk are gone. It should also provide a dose of reality. When we make arbitrary cuts to scientific and medical research, real people pay the price for cures unfound — often in the most horrible of ways.

Registration for the walk starts at 1 p.m., with the walk of a mile and a quarter beginning at 3. Participants who make the minimum $25 contribution receive a Walk With Tori T-shirt. Information is available by calling 717-597-9200 or by email at walkwithtori@yahoo.com.

The first year, Tori said she was hoping for 50 participants. Instead, the two walks have averaged 500 people. It would be nice this year to set a record, for Tori and for the others who suffer from a disease that few know of or understand.

Tori Anderson has given so much to this community in so many ways. It is time to give back to her.

Tim Rowland is a Herald-Mail columnist. His email address is timr@herald-mail.com.

Advertisement
The Herald-Mail Articles
|
|
|