Take On Life

Brian Koonz on life in Greater Danbury

Newtown man smiles through Lou Gehrig’s disease

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Hi everyone,

The irrepressible smile gets you the moment you walk into Bobby Murray’s room at Bethel Health Care.

Not the fancy, high-tech wheelchair that resembles the flight deck of the Space Shuttle.

Not the affable therapy tech stretching and kneading Murray’s arms and legs while she breaks down Super Bowl XLVI in her commemorative Giants T-shirt.

It’s the smile that gets you.

And it gets you good.

No matter who comes through Bobby Murray’s door, you see, this is how he greets friends, family, strangers – even amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig’s disease.

All at once, Murray’s smile is both disarming and reassuring, and I find myself in awe.

Never mind that ALS is a particularly cruel terminal neuromuscular disease that does not have a cure – at least not yet, Murray will tell you.

“Why be negative and be in the dumps when you can be happy and live one day at a time?” said Murray, 44, who was diagnosed with ALS seven years ago, after working as a successful sales executive for Red Bull energy drink.

“It doesn’t do any good if I’m negative. It doesn’t make you feel any better,” Murray said. “I choose to live my life this way.”

Even as his muscles betray him, Murray’s strength resonates through his smile and his voice. Life is still about having the power to make choices – ones that really matter.

But someday, Murray understands, his ability to talk will become a memory, too, just like his days of running and tackling on the football team at Washington & Jefferson College in Pennsylvania.

Once they’re gone, they’re gone.

So what then?

Not too far from Murray’s wheelchair at Bethel Health Care is a special computer that gives him the freedom to write emails, surf the Internet and otherwise connect to the world.

The technology was given to him by New Milford’s Shirley Fredlund, the founder of “Voice for Joanie,” a nonprofit group that lends this sophisticated equipment to folks with ALS and teaches them how to use it.

Instead of typing on a standard keyboard, Murray stares at letters and other characters on the screen and blinks when the cursor touches the symbol he wants.

“I’m very fortunate. This will be my voice someday,” said Murray, who grew up in Newtown, but moved to Bethel Health Care a few years ago. “It’s a hard system to learn at first. You can’t have any other movement whatsoever. You can’t even move your head.”

This technology is also expensive – think new-car expensive – and can run as much as $10,000 to $20,000 per unit in some cases.

While donors such as Union Savings Bank, IBM, the Diebold Foundation, the MBIA Foundation and the Ellen Knowles Harcourt Foundation have been generous over the years, Fredlund still needs money to meet the growing demand for eye-gaze computers all across the country.

That’s where the fundraising comes in, Fredlund explained, so “Voice for Joanie” can help Bobby Murray and other people with ALS use the equipment they need for free.

So mark your calendars: On May 5 at the VFW Hall on Avery Road in New Milford, the annual “Voice for Joanie” fundraiser will be held. There will be raffles, door prizes, magic, music, food and a silent auction.

Murray even donated a football for the event autographed by former New York Jets quarterback Joe Namath.

“Bob’s awesome. He’s one of my best friends,” said Natalie Wagner, 31, his therapy tech at Bethel Health Care. “We spend an hour working together at the end of the day. We’re like brother and sister.”

Murray agreed on the spot.

“She’s like my second family,” he said, flashing that million-dollar smile again. “We are like brother and sister.”

Murray refuses to be defined by ALS, three letters that have changed his world forever.

But just like his old football days, Bobby Murray still loves to lead. At Bethel Health Care, he serves as president of the resident council.

“They call me the mayor,” Murray said with a laugh.

“They really do,” Wagner nodded. “He’s not kidding.”

Fredlund went a step further: “Everyone knows him and loves him.”

I’m not surprised. They’ve probably seen that irrepressible smile, too.

Categories: General
Brian Koonz

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