Ride For Life: For these guys, friendship means good times and bad

His friends kept the whole trip a secret.

Wilmington resident Jay Miller didn't have a clue last fall as his friends and girlfriend were cooking up the best surprise of his life: a trip to an Atlanta Braves game with the chance to meet the players and coaches.

"That whole trip to see the Braves was amazing, because that was Jay's dream, plus it took persistence to make that happen because it wasn't easy," said Carla Miller, who married Jay on New Year's Day.

But for his friends, the hardest part wasn't negotiating with the team's coaches. It was the fact that their 29-year-old friend has Lou Gehrig's disease, or ALS, an incurable - and fatal - neuromuscular disease characterized by progressive muscle weakness resulting in paralysis. Every day when Jay walks by the picture hanging in his house of him and Braves outfielder Andruw Jones at the game, he remembers the crowds screaming as Mr. Jones hit two home runs that day.

He still "can't believe it really happened. It's like, wow, we did it."

Circle of friends

Making friends seems to come naturally to Jay. His closest buddies at King Neptune Restaurant at Wrightsville Beach call him "Koolie" because "he's always been a real cool and easy-going dude," said Bernard Carroll, his brother-in-law and owner of the business. Before he got ALS, Jay worked in the family business with his two sisters, Pam Carroll and Quinn Miller, for 11 years. They didn't fight, as siblings who work together often do. Jay isn't a troublemaker.

"Oak trees in a hurricane will snap and break, but Jay is a willow and just bends and goes with the wind," Bernard said.

When he lived on the beach, Jay was known for saying, "You never know. Any of us could get hit by a bus, so you have to live life day by day." And he lived his mantra, bartending at King Neptune and bar-hopping with his friends.

That's how he met Kenny Beavers, an owner of Red Dogs, a bar next to King Neptune.

They became fast friends about 10 years ago, hanging out on the beach and playing softball in the Wrightsville Beach Softball League.

Playing in that league, Jay met another good friend, Tim Parent.

"We used to hit our balls to the outfield for Jay to catch," he said, laughing.
But when Jay couldn't catch or throw softballs as well as he used to and when mixing drinks at work became more difficult, he knew something was wrong. First he went to a hand specialist, then to a neurologist and then to Duke Medical
Center in December 2001, when doctors told him it was Lou Gehrig's disease.

The greater shock came when the doctors told him he might have only two to five years to live with the degenerative disease.

He compares the feeling when he first heard to a "big kick in the chest."

"I just couldn't believe it was happening to me. I was real down for a while," Jay said. "It took me a while to get my head straight. I was worried about everything."

For his friends, the news sent some into shock and some into denial.

When his sister Pam found out what ALS was, "she turned white as a ghost and cried for several days," her husband said.

"We still say it can't be happening, but it's happening fast," Bernard said.
Kenny was in denial.

"I just couldn't believe it, and I still can't believe it," he said.

Eric Meacham, who also works at King Neptune, noticed Jay was having trouble using his hands. He asked Bernard if Jay had Lou Gehrig's disease. When he heard the news, he sat down, covered his face with his hands and wept.

"I couldn't even pronounce what he had," Tim said of his first reaction to his friend's diagnosis. "I was shocked and saddened at first, but now, it's hard to be sad because Jay has this sort of kindred spirit. He's pretty happy all the time, so that has made the news gradually easier to accept."

But instead of giving up hope, his friends have surrounded him with their love and support.

Let the circle be unbroken

Many of his friends have become more dedicated to Jay since his diagnosis.

"It's a great friendship," Kenny said. "Every time I have a bad day, I think of what he's going through and realize how lucky I am."

"Kenny calls me his little brother, because he never had a little brother, and I never had an older brother," Jay said.

Today, Kenny also calls his friend every day to ask "if he wants any lunch or to get out of the house. I come by and pick him up, and we talk about baseball or anything. I also bring my son, Whit, over to see him, too."

Tim talks to Jay at least once a week.

"If he's able and willing, we'll probably take him to a basketball game in the spring," Tim said. "He's a really great person and means a lot to all of us."

He means so much to his friends that they've created a foundation to raise money for him called Circle of Friends. Together they've held three fund-raisers raising $ 13,000 at a July 18 party at Red Dogs, $ 20,000 at the Circle the Loop benefit walk Dec. 14 at Wrightsville Beach and about $ 2,000 at a Christmas party.

"The money has been great because I can't work anymore, and I don't have to worry as much how we're going to pay for everything," Jay said. "But seeing all my friends, that's what keeps me together."

The money will help him with upcoming medical treatments. Jay will start a trial to slow the progression of the disease at Carolinas ALS Center in Charlotte this month. The only FDA-approved medication to slow ALS, Rilutek, costs approximately $ 700 a month.

In addition, different friends take Jay to pool therapy three times a week at the YWCA. When his friends arrive at the house, they help him dress and help him get into his wheelchair and into the car before taking him to the YWCA. During pool therapy, Jay stretches and works on walking and kicking to keep his muscles strong. Then his friends pick him up and go out to lunch.

Despite his resolve, some daily activities such as walking, moving his hands, and opening bottles are getting progressively more difficult for Jay.

But Jay doesn't feel sorry for himself. His friends won't let him.

"It's the way he's carried himself his whole life. He's just a nice, caring guy. He's never changed, and he's not letting this disease change him," Kenny added. "It's made him stronger."

His other source of strength is his wife. Jay proposed to Carla at Thanksgiving dinner in front of both their families. They were married New Year's Day and now are expecting their first child.

Jay's friends don't look at his marriage to Carla as losing a brother but gaining a sister.

"When he got married, we weren't giving up anything," Kenny said. "We were adding to the family."

The guys now check on both Millers.

"They are all taking care of both of us. I call them our guardian angels," Carla said. "It's a really overwhelming feeling when you know people care, and they're all around you."

Take me out to the ball game

A major example of his friends' love for Jay came last fall.

"When we found out Jay had Lou Gehrig's disease, we knew we had to do something for him," Kenny said.

Tim had connections to one of the Braves' players, so he worked for two weeks in late August and September to get the Braves to agree to see his friend.

"We tried calling the Make-A-Wish Foundation and the Starlight Foundation to see if they could help, and they both said that he was too old," Tim said. "So we decided to do it on our own."

Still, there was talk of a baseball strike stopping the season, and Tim wasn't sure the Braves would be able to meet Jay. Finally, he got tickets for a game on Sept. 10. That day, Kenny and Tim dropped by Jay's house to take him for a ride.

"We told him we had to make a stop downtown, and we pulled up to a white limousine that was waiting there to take him to Atlanta," Tim said. "You could tell he was just overjoyed, standing there smiling."

Though they got to Atlanta two hours later than expected, and they didn't have passes, the players and coaches came out to greet Jay and take him into the stadium.

"Jay refused to get into his wheelchair and walked down all those stairs to sit in

Ted Turner's seat with the Braves. It was amazing," Kenny said.

And the players didn't rush. They spent 15 minutes talking with Jay before the game started, signing baseballs for each of the friends and posing for pictures.

And the Braves won the game.

"The way they treated him was great," Tim said. "Bobby Cox (the manager for the Braves) just called me the other day to ask how Jay was doing and said he was welcome to come back anytime. They really care."

"And we're going back, too," Jay said, smiling.

WANT TO HELP?

Write to: Circle of Friends Care of King Neptune Restaurant, 11 N. Lumina Ave. Wrightsville Beach, NC 28480.