'Staggering generosity'

July 26, 2015 at 12:05a.m.

BOARDMAN

It’s a beautiful mid-July day in Boardman and the township’s most beloved resident, Christine (Moschella) Terlesky, 42, is sitting upright in her bedroom, talking (and, darn it, joking) about a battle with ALS that she doesn’t like talking about.

“It’s such a downer story, isn’t it?” she said, laughing.

Next to her bed sits a breathing machine that she uses at night to give her diaphragm a rest. Her insurance covers about 80 percent of the cost, with the other $120 a month covered by her husband’s salary and what Terlesky calls the “staggering generosity” of people in this community.

“Here’s an example: My son Tyler’s friend did a lemonade stand that raised $50 for me and I was just like, ‘I’m not going to take this kid’s $50!’” said Terlesky, who did accept the $50 because ... how could she not?

About 15 feet away is a top-of-the-line, joystick-controlled wheelchair that carries a price tag of around $35,000. Someone donated it.

“That cost more than my Malibu,” she said, chuckling.

In her garage sits a handicapped-equipped 2010 Chrysler Town and Country that she uses to go to her son Brian’s golf tournaments and go to the movies with Tyler and go to the swim club with her daughter, Emma. Even at 5 years old, it comes with a $40,000 price tag. Her sister, Jolene, has already raised half of that money from a GoFundMe account. (www.gofundme.com/christinesvan-com)

“It’s crazy,” said Terlesky, a longtime government teacher and assistant girls basketball coach at Boardman High. “I just think this area is special because I don’t think a lot of people get the kind of support that I do.

“Even talking to my friends in other parts of the country, like North Carolina or Florida, there’s not this sense of community. They’re not tied to a school. They’re not tied to a neighborhood. They’re not tied to a community.

“I’m wondering if it’s just different in Ohio. I taught at [Uniontown] Lake [High] and I got all kinds of messages from those people when I was diagnosed and I was only there for a year. I think if you decide to live in Ohio, your priorities are different than fame and fortune.”

Nearly two years ago, Terlesky was diagnosed with amyotrophic lateral sclerosis, a rotten, crummy, unfair disease that has already robbed her of the ability to walk and use her hands. But she can still talk and she can still type and even though she knows the disease will eventually take those things, she’s worried about today, not tomorrow.

“I did talk to someone when I first got diagnosed who told me, ‘Don’t look too far into the future,’” Terlesky said. “Whenever I do look into the future, I get real depressed, so I don’t like to look years in advance. I take everything one day at a time.”

Periodically, she’ll post an update on her health for her 918 friends on Facebook, “but it takes a lot out of me. I appreciate the feedback, but it ends up being emotional and I don’t like getting like that too much. It sets me back.

“Like, I hate going to the doctor. Dread it. I mean, what’s he going to say? ‘Guess what?’

“Nothing like that’s ever going to happen.”

ALS is a disease with no known cause and no known cure and, until last summer’s Ice Bucket Challenge raised $115 million, it was a disease with almost no funding. It still lags far behind diseases like cancer and AIDS — not just in funding, but in awareness and treatment options — and until New Orleans Saints standout Steve Gleason was diagnosed with the disease, its two most famous faces belonged to Yankees great Lou Gehrig (who died in 1941) and physicist Stephen Hawking, an extreme outlier who has lived with ALS for 52 years, or 47 longer than most ALS patients.

“ALS is a disease of people with no voice, because people lose their voices when they get it,” she said. “And what’s left behind is their families.

“The life expectancy is like two to five years, so it’s really quick. So how do they get their voices heard? You’re not going to find a lot of angry people with ALS. Life is too short to be angry.”

Earlier this month, the House of Representatives passed the Steve Gleason Act, which allows Medicare and Medicaid to speech-generating devices for people with neurological disorders, like the one Gleason uses to type through his eye movements. (The bill had already passed the Senate.) This sounds good until you realize that Medicare and Medicaid already were covering those things until a 2014 rule change.

“His bill, it sounds insane that they took [SGDs] away but I’m sure it was just bureaucratic red tape,” Terlesky said. “When you make something big, you’re trying to cut money and you cut something not a lot of people us, but holy crap, are you kidding me? Then people are like, ‘Oh god, this needs to get passed.’”

Laughing, Terlesky added, “I mean, you took this away from terminally-ill people? Who wants to be the, excuse me, the a--hole that does that?”

The bad news is, most ALS advances are geared toward easing suffering, rather than finding a cure. If you have cancer — in nearly any form — you can probably find a clinical trial. But there are about 14 million people with cancer. There are only about 30,000 with ALS.

“When you’re talking about rare diseases, there’s not going to be the amount of money to be made in cancer or heart disease or cholesterol,” Terlesky said. “Could you imagine if they invested money in neurological diseases instead of Viagra? How many forms of that [erectile drugs] do you actually need?”

Until she had to quit in the spring of 2013, Terlesky spent most of her adult life as a social studies teacher. (Fun note: When U.S. Rep. Tim Ryan texted Terlesky, asking if he could do anything for her, she wrote back, “I want to meet Hillary Rodham Clinton.”) She still misses being around kids, a point driven home in May when she spoke at Austintown Middle School in May.

“I would like to do more of that, but I think people are afraid to ask me,” she said. “Those kids from Austintown were just awesome. It reminded me why I became I teacher. I forgot how isolated I was from it. Once I got up in front of kids, I was like, ‘Yeah, this is what I should be doing.’”

Terlesky knows she’ll need to get a caretaker soon, someone who can take some of the burden off her husband Brian, a teacher at Boardman High who would leave school during his lunch hour to help Christine use the restroom. Last month, they celebrated their 18th anniversary and Christine said she knew she would marry him when he bought her snow tires for Christmas. See, he couldn’t afford both jewelry and snow tires and he didn’t want her to drive to Youngstown State on bald tires.

“He does everything for me,” she said. “Everything. He’s the only one that can lift me up right now.”

Physically, anyway.

“The people around me are pretty positive,” she said. “I’ve got good friends and a good network of people. Whenever I end up getting too stuck in the house, which I have a tendency to do because it’s hard for me to get out, people make me feel really good about it.

“It’s why this area is so special.”