For 18 years, George Smith of Mount Vernon stalked the halls of the State House, where he aggressively lobbied for bills on behalf of the organization he ran, the Sportsman’s Alliance of Maine.
On Wednesday, that former lion of the legislative game settled into a chair here at the BDN to elaborate on a story he had shared with readers of central Maine newspapers a week earlier.
Always lean, the 69-year-old Smith was even thinner than normal. His voice is softer, and our conversation was punctuated with frequent raspy coughs that hint at the battle he’s facing.
It’s a battle that could take a year, or 10, or more.
But it’s a battle against a disease that has no cure.
Fourteen months ago, Smith was diagnosed with ALS, also called Lou Gehrig’s Disease.
His future is uncertain. But his attitude in facing the challenges ahead has already begun to inspire others.
Smith promises to continue to try to do just that: Live one day at a time. Place value on the truly valuable things, like family, friends and relationships. And share his daily lessons with others.
Smith said he first started noticing a problem when his muscles began twitching about two years ago. His primary care physician referred him to a neurologist, and eventually the dreaded diagnosis was reached.
In the 14 months since, the disease has continued its inexorable march.
“I’ve gotten to the point now that the symptoms are pretty obvious,” Smith said. “People are asking about it because I’ve lost weight. I can’t do anything with my fingers. My voice is changing. So I thought, I’d better get this out there.”
That’s what he did last week, in his weekly column in the Kennebec Journal and the Central Maine Morning Sentinel. The reaction to the piece was overwhelming, Smith said, as thousands of people from Alaska to Italy sent him messages.
Another reason he finally told his story: He thought the tale deserved to be told, in hopes of helping someone else.
“I want to write about the experience,” he said. “And it’s time to start doing that.”
Smith said his initial reaction to the diagnosis was to start researching. He has attended seminars on communications — ALS patients typically lose their ability to speak at some point — and on wheelchairs. He has a specific type of chair picked out, figuring he needs one that can move up and down, allowing him access to his writing table.
Smith said that sharing the news of his diagnosis has led to plenty of social visits.
“I joke that all of my best friends want me to take me to lunch, so I’m getting a lot of lunches,” he said. “That’s really good.”
Never, he said, did he resort to negativity.
“This is what I tell people: ‘What’s the alternative [to the way I’ve chosen to fight this battle]?’ Anger? Depression? That’s not me. I couldn’t go there. So I just started on this road, trying to be positive.”
Positivity is one thing. Reality is another. And Smith is well aware of what may happen to him in the years ahead. After all, he sees hints of his future in everyday moments.
“I can’t tie on a fly or release a fish any more. So I have to fish with friends. I fished a lot less, but I did get out,” Smith said. “And I can’t pull the trigger on a gun, but when my dad died in 2014, I lost the interest in killing deer … the next year I saw 38 deer … I love taking new hunters out now.”
Smith says he does have a major concern. And he he also has a goal.
First, he worries about his wife, Linda, whose role as a caregiver will increase over time.
“I almost think [the diagnosis] had a worse impact on her than me, because she’s going to have to bear a lot of the burden of it. Even now, she buttons my shirt. I have a device, but it takes a half an hour to get my shirt buttoned,” he said. “If you look into it, let’s say I can’t breathe, or swallow, or talk. There’s quite a burden on your caregiver.”
Among those burdens: The financial demands.
“There’s always the concern that I’m going to spend too much [money on my own health necessities] and leave Linda penniless [when I die],” Smith said. “That’s always a concern.”
Smith said he has begun to cut back on his own projects and commitments, and has focused instead on getting to as many of his grandchildren’s activities as possible.
“I wish I’d started that way earlier,” he said. “That’s going to be something that I emphasize to people: Don’t wait until you’ve got a fatal illness.”
So what’s his message? Smith said there is one, and it’s remarkably simple.
“Take another look at your priorities and your busy lives, and even write down, ‘What is most important?’” he said, his voice softer still. “Then, do more of that. That’s the only message I can give people, really. Because I think that’s the most important conclusion.”
John Holyoke can be reached at email@example.com or 990-8214. Follow him on Twitter: @JohnHolyoke