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Local mime raises awareness about rare disease

Donna Thompson, Special to the Daily Sentinel
Posted 12/18/22

The first time Herkimer resident John S., 70, heard there was a mime performing at his high school, he had no idea what a mime was.

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Local mime raises awareness about rare disease

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HERKIMER — The first time Herkimer resident John S., 70, heard there was a mime performing at his high school, he had no idea what a mime was. But Tony Montanaro’s performance at a school assembly sparked an interest that became a passion and a career.

Likewise, in 2005, when a doctor first told him he had scleroderma, he had no idea what that word meant.

But finding out he is one of more than 250,000 Americans living with scleroderma-associated interstitial lung disease (SSc-ILD) and dealing with its impact has resulted in a different sort of passion — to help spread awareness about this rare condition. ILD encompasses a group of over 200 lung diseases and can cause scarring and inflammation, making it difficult to breathe.

John works with Boehringer Ingelheim Pharmaceuticals, Inc.’s Lungs&You Mentor Program, which helps people living with chronic conditions connect and share their stories, and his last name is being withheld to protect his privacy.

He was born in Ilion and attended school in Little Falls and Frankfort. It was at his high school in Frankfort that he was introduced to mime.

“I’m playing football and I heard there was a mime in the auditorium,” he said. “What was a mime?’’ he wondered and went to the auditorium to find out. There he watched Montanaro perform illusions such as climbing an imaginary rope and gliding across the stage.

“I was mesmerized,” said John. “Afterward I went up and introduced myself.”

Montanaro invited him to attend a two-week workshop. He accepted the invitation and began to learn some illusions.

“I was playing in a rock and roll band and I’d do some illusions,” John recalled.

He stayed in touch with Montanaro and one day Montanaro called to invite him to six months of live-in training in the art of mime. Twenty people were invited. “He called us the cream of the crop,” John recalled.

He jumped at the opportunity. “I started putting together my own show.”

Then he went on tour, presenting his show at school assembly programs for students from kindergarten through college. “I was doing two or three shows a day, five days a week,” he said.

He’d also return to the local area and play with the band.

When John learned that the circus that was playing in Utica needed a clown, it occurred to him that, being a mime, he could also work as a clown. “I put some clown skits together. They picked me up, and I spent six months with the circus. It was fun.”

He also learned how to juggle while in the circus.

“I met the great juggler Bobby May,” he said. “He showed me some stuff.” May invited John to his house and was juggling three balls when his wife told him he should stop because of his heart condition.

But John could see that juggling was still May’s passion.

In 1979, John started his second career — in cable communications. Cable TV was new at the time and his job was to supervise its installation in apartment buildings, nursing homes and schools.

But he didn’t leave his mime act behind.

Once he had the crews working on the installation at a nursing home, he’d go to the cafeteria or other places where the residents were gathered and ask “Who knows what a mime is?” If no one raised a hand, he’d ask if they knew who Red Skelton or Emmett Kelly were — which they did — and he’d present a mime act.

He also received permission to use his free time to teach mime at schools in the area where his crews were working.

John was closer to home when he experienced the first signs of scleroderma. He was working to bring the Grant Hotel in Cold Brook back to life at the time.

“I was putting an addition on the side of the house when my hands got really cold,” he said.

When he went inside, he noticed they were turning purple.

“The next day I went to the doctor.” After running a blood test, the doctor sent him to a rheumatologist, who ran more tests and told him he had scleroderma.

“I had no clue,” John said. “He told me it’s a nasty disease.”

How did he get it? The doctor told him that was unknown.

Is there a cure? The answer was no.

That was in 2005.

The disease “started showing its ugly face” in 2009, John recalled. “My skin got tight, my fingers began to curl, my joints started hurting, my breathing wasn’t right.”

He went back to the doctor. There were more tests - X-rays, MRIs, CT scans, and CT scans with dye. This time, John was informed that he had diffuse systemic scleroderma with lung involvement that could move to the heart. He was 58 years old and disabled.

He didn’t tell his family at first.

“It’s a challenging disease,” said John. “It’s always progressing; it never stops.”

He has put a team of doctors together and “I try to maintain my life as best I can. I lost a lot of strength and flexibility.”

Things became even more challenging last year. In February of 2021, he suffered four heart attacks, the fourth one occurring while he was in the emergency room. He had triple bypass surgery. His heart was inflamed, and there was tightening in his chest. A metal plate was inserted.

“I lost the ability to swallow,” said John, adding that he also lost 35 pounds. “I’m fighting my way back. I never give up.”

Six months ago he couldn’t stand. Now he’s able to walk a little. He misses playing guitar and juggling, but he takes part in Zoom meetings regarding ILD in an effort to keep getting the word out about the rare condition.

His girlfriend, Christine, serves as his caretaker, and friends and family members call or stop by and help keep his spirits up. John admits that there are times when he feels depressed or angry. He deals with it by channeling his thoughts to something else. “Maybe I can push the pain aside.”

John also looks at what he is able to do now, which is tell people about scleroderma and interstitial lung disease. There are some 29,000 cases in the tri-state area of New York, Connecticut and New Jersey, he said. “I pray for a cure, if not in my time, then maybe later.”

As for mime, he says, “I’ve tried to do some illusions. They’re not crisp, but I do it with passion.”

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