|05-04-2002, 10:27 AM||#1|
Wish come true
Wish come true
Patient with Lou Gehrig's disease inspires decals on race cars.
By John J. Shaughnessy
May 04, 2002
Brian Hall never expected his cause would be championed in this year's Indianapolis 500.
He never expected that Eddie Cheever Jr., Sam Hornish Jr. and many of the other race car drivers would put "Brian's Wish" decals on their high-priced, endorsement-covered race cars.
Then again, no one could have expected the remarkable story of hope, courage and faith that has unfolded through Brian, his family and the racing community in the past five months.
"The hero in all of this has been Brian -- to make something positive out of something that has been so horrifying for him," Cheever says.
The story of that impact had an unlikely start when Brian entered St. Vincent Hospice, angry and devastated.
It was crushing enough that he was dying of Lou Gehrig's disease. The 38-year-old Indianapolis resident just desperately wanted to spend the last days of his life at home, surrounded by his friends, his parents, his younger sister and his 8-year-old son. But his care became too overwhelming when his mother and father were both diagnosed with cancer in the past year.
So the painful decision had to be made to take Brian to the Indianapolis hospice a few weeks before Christmas last year. It was the last place he wanted to be, at least until nurse Barb Lyons walked into the room.
As a nurse of 37 years, Lyons long ago learned the importance of trying to make a connection with patients. She thought she might have one with Brian when she saw a framed John Mellencamp concert poster that was lined on the sides with ticket stubs from the Indianapolis 500.
"Oh, you're a race fan. So am I," said the 59-year-old nurse, who hasn't missed an Indy 500 since 1966.
The darkness lifted from Brian's face, replaced by a huge smile. When she asked him who his favorite driver is, it was Lyons' turn to be surprised.
"He said, 'Eddie Cheever,' and I about flipped because everybody knows Cheever is my guy," Lyons says. "That's because Eddie has done some favors at hospice in the past. The conversation went from there."
Both their worlds took an amazing turn later that night when Lyons made a spontaneous request that would lead to the start of the "Brian's Wish" program.
Named for baseball star
Ever since he was diagnosed nearly five years ago, Brian has wished for a cure for the disease that's technically known as amyotrophic lateral sclerosis (ALS).
It's more commonly known as Lou Gehrig's disease in memory of the Hall of Fame baseball player who died of the fatal, progressive condition that attacks nerve cells in the brain and the spinal cord, leaving people paralyzed in its later stages.
As his years with ALS have passed, Brian has realized that a cure wouldn't be found in time for him or many of the 30,000 Americans affected by the disease. Since the life expectancy is two to five years after diagnosis, Brian knows he will die soon.
He just hopes he will live to see his "Brian's Wish" decals in the Indianapolis 500 -- a dream that began the night after Lyons met Brian.
She logged onto a Web site that Indy Racing League drivers, crew members and fans use to discuss their favorite sport: www.trackforum.com.
"It was two weeks before Christmas and I just happened to think there were a lot of IRL drivers that live in the Indianapolis area and that was a downtime for them," Lyons recalls. "I told them about Brian and said, 'If there's any of you guys who have the time, why don't you stop by? You have no idea what it would do for this kid.' "
When Lyons arrived at work that next afternoon, race car driver Mark Dismore had already come to visit Brian. Cheever visited the next day, bringing an autographed team shirt from the 1998 Indianapolis 500 that he won.
Scott Harrington followed. So did Robbie Buhl, Sarah Fisher, Tyce Carlson, Donnie Beechler and Robby McGehee. A.J. Foyt, Jeff Ward, Billy Boat and Buzz Calkins sent their wishes and souvenirs.
Then NASCAR driver Tony Stewart came to Indianapolis for a "Brian's Wish" fund-raiser that made $1,000 -- an amount Stewart matched.
When someone suggested making "Brian's Wish" decals and asking the drivers to put them on their race cars, Lyons approached Cheever about the idea. He hesitated briefly, knowing this request entered the business side of the sport. Then he told her to spread the word on the Web site that his team would do it.
Sam Hornish had the decal on his race car when he won the first IRL race of this year -- March 2 in Homestead, Fla. Since then, about 75 percent of the IRL drivers have placed the decals on their cars.
"These guys have continued to come back," Lyons says. "They have formed a close bond with Brian."
Memorable first-time visit
Cheever remembers the impact of seeing Briain for the first time paralyzed in his bed, needing someone to suction the saliva from his mouth so he doesn't choke on it.
"Here's a young man who should be in the prime of his life, who has a young son. And he has one of the most terrible afflictions I've ever seen," says Cheever, who's 44. "It's a very sad thing."
When Cheever walked down the hall with Lyons after his visit, the race-car driver had tears in his eyes. But he has kept coming back.
Like most of the drivers and crew members who visit, Cheever has been struck by Brian's passion for racing and his ability to think beyond himself.
"Visiting him is a lot more of a gift to me than it is to him," Cheever says. "The fund is a wonderful idea. I think it's great he's using whatever time he has left to help others."
Robby McGehee is another driver glad to help fight the debilitating disease. "I didn't know that much about ALS before this. It's touched me. But it's not just the drivers and the teams; it's the fans, too. We're just trying to support him."
Surrounded by reminders
From his bed, Brian looks onto a room that he and others jokingly describe as a racing museum. Autographed pictures of race car drivers are everywhere. So are racing caps, shirts and jackets.
"I never wanted to be a poster boy," he says in a hushed, halting voice. "It's not just about me. ALS affects thousands of people. There are even more when you count caregivers. I want Brian's Wish to emphasize the research for the cure."
He helped design the decals and bumper stickers that are marked with the words, "Brian's Wish, Cure Lou Gehrig's Disease." The decals also feature a gold halo above a red racing helmet, which has angel wings extending from the back of it. Fans who donate to the Brian's Wish fund will receive a decal.
More than $5,300 has been raised so far but Brian says the more important part is raising awareness.
"If the Brian's Wish stickers take off, it could help start conversations," says Brian, who once personally donated $1,000 to fulfill the wishes of other ALS patients before they died.
Love of racing runs in family
Brian's mother says he comes by his love of racing naturally. She and Brian's father met on a blind date, going to a stock-car race. His parents also went to Indianapolis 500 qualifications when his mother was pregnant with him.
While his parents' marriage ended in divorce, their love for him has never stopped. Mary Ann Miller, Brian's mother, comes to the hospice with her husband, Ron. Jim Hall, Brian's father, comes to see Brian with his wife, Nancy. Brian's younger sister, Bonnie Brothers, visits often, too. His son Aidan visits as well, but not Aidan's mother who is no longer involved in Brian's life.
"This has been a long road," Mary Ann Miller says of her son's struggle. "I was trying to explain to somebody about his perseverance. I remember him wrestling in junior high and high school. He just persevered until he could pin someone. He's like that with life."
Then comes the story of a special moment between Brian and his son Aidan.
Brian has had ALS since Aidan was 3. So the father and son have found different ways to spend time together and show their love for each other. They watch cartoons. They play games on the computer. Aidan sometimes climbs into his father's bed to give him a hug.
Yet one of the most telling times in their relationship came when Aidan was struggling to fix one of his toys. It was a problem that Brian could have handled easily with his immense technical skills, but his paralyzed body wouldn't let him. And Aidan was growing more and more frustrated as he just couldn't get the toy to work.
The father kept encouraging his son, instructing him patiently. It was clear that Brian didn't want Aidan to give up. Finally, Aidan found a way to make the toy work. The smile exploded onto Aidan's face, matched by Brian's.
Needing to talk about death
For every patient in hospice, there comes a time when they desperately want and need to have "the death talk," Lyons says.
"Most of them don't fear death so much as they do the process of dying. They want to know, 'What will it be like?', 'How will I feel?', 'Will I be afraid?' Brian and I had that talk. I sat at the side of his bed and I held his hand. After we had the talk, Brian had such a peace, a calmness, in his spirit.
"He told me, 'At least now when I die, I can see I've done something positive about the disease.' He knows he's leaving this legacy."
Brian has touched Lyons' life as well.
"As a professional, I have tried very hard not to get real involved with him on an emotional level," she says. "But I really care about him.
"People want to give me credit for this but all I did was post one little request on a Web site. Look what happened. Look how good people are. God's plan and the power of the human spirit never cease to amaze me."
Call John Shaughnessy at 1-317-444-6175.
|05-04-2002, 12:05 PM||#2|
Join Date: Jul 2001
Location: Denver, CO
Inspirational story again highlighting the urgent need for research and application.
A great line about "raising awareness". A message that I believe we can all take part in. Talk to everyone you know and can about the need for education, awareness, funding.
This guy has remarkable spirit.
Onward and Upward!