It was while throwing a bowling ball that Eugene “Bud” Gray knew something wasn’t right.
He felt kind of silly about it. He was, after all, a man who hoisted 200-pound objects like it was nobody’s business. And even though he began to notice in May that he wasn’t able to lift the same things he had a month earlier, he had dismissed it as just a pulled muscle. He’d get his strength back, he thought.
But then came that June day in a Canadian bowling alley. Bud Gray was having trouble throwing a bowling ball. He was an above average candlepin bowler with an average that floated between 118 and 120. But that day he bowled an 85 and then an 88.
“I said something was wrong,” he said.
He had someone take his place for the remainder of the tournament and headed home to Bangor.
Doctors took blood from him. He had X-rays taken. And then a doctor confirmed that something was wrong. Something very serious, indeed. The doctor told Gray that he was dying. He had Lou Gehrig’s disease and it was something they couldn’t do anything about.
And Bud Gray’s life changed. And so did the lives of those around him.
The medical name for Lou Gehrig’s disease is Amyotrophic lateral sclerosis or ALS. It became more commonly known as Lou Gehrig’s disease when the former New York Yankees hall of famer contracted the disease and then died of ALS in 1941.
It attacks nerve cells in the brain weakens the spinal cord, and gradually kills off motor neurons that control muscle movement in the limbs. Use of the arms and the legs deteriorates until they become useless. It can also affect breathing and in many cases a patient’s final days are spent on a respirator.
But not Bud Gray. He has the end planned out and in typical Bud Gray fashion his end is less about himself than others.
“If it gets so bad that I can’t stay alive unless they put me on a machine then I don’t want to be on a machine. Because all I feel that it is just prolonging it. The insurance company is paying a lot of money for nothing if I’m going to die within two or three weeks or something like that, I’d just as soon go and get it over with. It would be a lot easier for everybody.”
Gray on the go
While the disease’s cause is not totally understood, research shows that ALS runs its course in three to five years..
“This has happened pretty fast,” Gray said. “The doctor told me I’ve had it for quite a while and he said I might have two good years left.”
Then the 55-year old Gray laughs.
“I don’t know what he means by good years. I haven’t seen anything good yet.”
Researchers have also speculated that the disease may be hereditary but Gray disagrees.
“It was never in my family at all,” he said. “And I had cancer in my family. I figured if anything that would probably be it. But when I found out what I had I said to myself, I can’t believe I’ve got that.”
Neither could his friends or anyone who knew him. Gray enjoyed fishing. He was a golfer who regularly shot in the low 40s at Pine Hill Golf Course in Brewer. He was constantly on the go. This is a man who was a tower of strength and loved his work. He was so proud of the truck he drove making deliveries that his boss at Dennis Paper in Veazie, Ray Dennis, said Gray would go to work on an off day just to wash his truck.
“He was one of the best employees [we’ve] ever had and we’ve been in business for 93 years,” Dennis said.
It has been difficult for those who know him to watch the disease chew away at Gray.
Lewis Wiley, who owns Lewis Auto Sales in Bangor, has been Gray’s friend for more than 20 years.
Wiley likes to tell the story of how they became friends. He says it tells you all you need to know about Gray.
The story goes that Gray invited Wiley to join his bowling team for a tournament in Pittsfield. Gray picked up Wiley and drove him to Pittsfield where they had a breakfast Gray insisted upon paying for. Later in the day, Wiley said, Gray had no money for a soda.
“He had spent the last of his money to buy me breakfast. That’s the way Buddy Gray is. That’s the kind of person he is,” Wiley said.
And there’s more to Gray’s giving of himself and his time. The stories come in droves of the times he helped Charlie Milan III with repair work at Bangor-Brewer Lanes in Brewer or the evenings and weekends he spent after a hard day’s work helping to turn Wiley’s “fixer-upper” into a comfortable home.
“I always told him I could never repay him for what he did for me,” Wiley said. “But it wasn’t just me. It was anybody who needed help.”
Part of the bowling team
Gray is also a notorious trash talker at the bowling lanes. Wiley says he could be counted on to harass opponents throughout their matches.
“He’d say anything. They’d come away from the lanes almost hating him,” Wiley said with a laugh. “In candlepin bowling you play a lot of head games with the other team. He was the best guy around at doing that. The rest of us would sit back and laugh watching him antagonize the other team.”
Wiley and his Lewis Auto Sales bowling team have been a part of the World Candlepin Team Championship for 10 of the 16 years the tournament has existed. The tournament alternates years between a Halifax, Nova Scotia, bowling center and Milan’s lanes in Brewer. In November the tourney returned to Brewer. But with a major difference – Gray wasn’t a participant.
Oh, he was there. Every day. He even insisted upon selling his normal share of $10 raffle tickets. Wiley said Gray’s personality made him the best ticket salesman in the business, often taking leftover tickets from his teammates and selling them.
And he stood, all he could, leaning against the back of a bench behind the lanes his teammates were bowling on.
“I feel a part of the team,” Gray said. “Lewis said I didn’t have to but I sold all my tickets for the team. Because I feel that when I found that I had this Lou Gehrig’s disease I feel that I was still part of the team. And I feel I should have done my part.”
Being a team member cost Gray mightily this year. The proud man spent the hours in pain and suffering through the indignities of having to depend on others to perform simple tasks for him that he could do just weeks ago.
“I don’t know how he does it,” Wiley said. “Being around my friends means a lot to me too but I don’t know if I could be as upbeat. He makes jokes about it. When he’s at the bowling alley and his pants need pulling up he’ll ask somebody to give him a lift job.”
Then there’s life away from the bowling alley where the hardest living takes place.
Gray lives with his girlfriend Joan Beyeler in a two-story house that he is having more and more trouble living in. Climbing steps is next to impossible without help and there’s not always someone around.
Plans are in the works among some of those who know Gray to approach Senator Olympia Snowe and Congressman John Baldacci for help in finding him a place to live.
“I don’t want a nursing home yet,” Gray said. ” I want an apartment that’s all one floor, that has one bedroom and a bath so I don’t have to go up and down stairs. I do it but sometime I’m not going to make it. I’ve fallen quite a few times.”
He says he is lucky to have Beyeler for a girlfriend. They have been together for more than three years. She works six days a week at a Bangor laundromat and spends much of the rest of her time taking care of Gray.
“When I met Bud at the laundromat in Brewer, I knew he was a keeper,” she says.
And as much as she helps him, she knows it’s not going to be enough.
“Eventually I’m not going to be able to do the things for him medically. I’m still going to be there but he’s going to need more help than I can give him. We have to find a way to find a place for him to live that’s on one floor and is handicap accessible.”
Beyeler knows far better than most – more than she wishes she knew – about ALS. She is the person who pulls the covers up over Gray each night because he is unable to. She knows that when she’s not around to help Gray he suffers.
She knows that after showering, Gray works up such a sweat from simply putting on his underwear and socks that he needs another shower.
She worries that he doesn’t eat right.
“He eats sandwiches because that’s what he can make.”
She’s worried that the disability check he receives through the insurance he had at Dennis Paper will run out in January and that Social Security will not immediately kick in.
And she worries that he will fall with no one around to help him. Falling is a big part of ALS.
He fell in an Orlando, Fla., restaurant. One second he was sitting there in the booth, the next he was face down in the carpet. Lewis Wiley and his wife Jeannie had taken Gray and Beyeler to Florida to see the sights and on their first day Gray took a tumble.
“He fell on his hands and knees,” Wiley explained. “Of course, his hands couldn’t protect him, so it was really his nose that was supporting him. It scared me. I got to him and he was shaking he was laughing so hard.”
But it’s not always laughs at the end of a fall. Another time Gray accompanied Wiley to a car auction and as Wiley walked away from his truck he heard an ugly sound.
“I ran around the truck and there he was on the ground. He had fallen out [of the truck] backwards and on his head. His legs give way and when he falls it’s like you having your hands in your pocket and slipping on ice. He can’t stop the fall. ”
And Wiley sees the whole thing as unfair.
“The last person in the world to deserve this would be him. But I can’t think of even my worst enemy having this. I can’t put it into words. He’s just a special guy. He deserves better than what I can put into words.”