Strength in Numbers
One family's resilient, positive response to a debilitating disease
By Kay West
JANUARY 10, 2000: On the evening of Nov. 11, the Vanderbilt Stadium Club was the setting for one of the dozens of fundraisers that it hosts throughout the year. About 500 people had gathered for cocktails, a buffet dinner, and the opportunity to bid on trips, goods, services, and some outstanding selections of wine. By 8 p.m., when the time came for the program portion of the event, the mix of chatter, laughter, clinking glasses, and service bustle had reached its peak decibel level.
If this evening had been typical of similar occasions, the 200 or so people trapped closest to the stage would have politely paused, while the remaining 300 would have continued eating, drinking, and talking. But on this night, the entire crowd grew so quiet that the proverbial dropped pin would have pierced the silent room with a clatter. From the rear of the room, it wasn't easy to see the petite blond woman at the microphone. But there was no missing the man by her side, his presence undiminished by the fact that he was confined to a wheelchair. He was the reason everyone had gathered at the Stadium Club, and he smiled broadly as he looked out at family and friends, his eyes sparkling as always.
Bruce Lawry's face spoke volumes, but his lips and tongue could no longer form the words he had prepared: Two years ago, he was diagnosed with Amyptrophic Lateral Sclerosis (ALS). His wife Bonnie spoke for him. Throughout the short speech, she held her husband's hand and stroked his hair, stopping occasionally to compose herself. Even though she was sharing her husband's thoughts about the devastating disease that has put him in a wheelchair and will eventually take his life, she delivered every word with a smile that mirrored his. The speech concluded with this advice: "Because we live every day to the fullest, I feel you should too. So I propose that we open all the fine wines you have purchased tonight and have a blowout. You never know, there might not be a tomorrow."
As he has done much of his life, Bruce Lawry left the room laughing. But the laughter among his friends was tempered by the heartbreaking knowledge that there are far fewer tomorrows left for Bruce than most 38-year-old men can look forward to. Yet as much as the disease has stolen from this man, with his lusty appreciation for good jokes, good food, good wine, and a good cigar, it has not taken away his unique capacity to live every day to the fullest.
"We can sit around and feel sorry for ourselves," Bonnie said on a recent afternoon in the couple's West Meade home. "Or we can live what remains of our life together to the fullest. We have always looked at life as an adventure, and we continue to do so. When we were diagnosed, our life changed overnight. We knew ALS would affect our lives, but we vowed that it would not control it. We are not dying of ALS, we are living with ALS. Bruce says that even though his body is dying, he has never felt more alive inside than he does right now."
Lawry's journey, from a full and vital life to a debilitating, certain death, has been bittersweet, marked by great sorrow and great joy, by rock-bottom lows and exhilarating highs, by the unfailing love of devoted family, the steadfast support of anguished friends, and unexpected gifts from virtual strangers. It has forced not only Bruce and Bonnie, but all of those who care about them, to live in the face of death, to laugh in the face of tragedy, to hope when all seems hopeless, and to give thanks for the small miracles all about them.
ALS was given a face and a name in 1939, when beloved New York Yankee Lou Gehrig stepped up to a microphone and delivered one of baseball's most memorable lines: "All in all, I can say on this day that I consider myself the luckiest man on the face of the earth." After several months of struggling at the plate and on the field, the star first baseman had been diagnosed with this rare and fatal progressive neuromuscular disease, which had been discovered some 90 years before.
There is no known cause, cure, or treatment for ALS, which affects the muscles, eventually rendering the victim's arms and legs paralyzed. Ultimately, it affects the muscles that control breathing; in their final days, ALS patients can inhale but have great difficulty exhaling, thus potentially experiencing carbon dioxide poisoning. According to Sherry Adcock, licensed practical nurse for Lawry's current neurologist Dr. Michael Kaminsky, ALS patients often succumb to pneumonia, or they simply go to sleep and never wake up. ALS does not affect the organs, which is what makes the disease so horrific to most people--a fully functioning brain is trapped inside a useless body.
Approximately 30,000 Americans are currently living with the disease, and every day 13 new cases of ALS are diagnosed in this country. Dr. Kaminsky has between 20 and 30 ALS patients under his care at any given time. The disease knows no gender, age, and race boundaries. It could strike a young African American woman or an elderly Caucasian man. In 1997, it just happened to hit Bruce Lawry, an athletic physical-fitness buff, only weeks shy of his 36th birthday.
Natives of Charlotte, N.C., Bruce Lawry and Bonnie Woods both attended North Carolina State University, where he played rugby and was the kicker for N.C. State's Wolfpack football team. He graduated in 1985 and went to work as an engineer. Bonnie was still in school when mutual friends set them up on a date; they grilled out with friends in her parents' backyard. "We figured if we didn't like each other, there would be enough other people around that it wouldn't matter," Bonnie remembers with a laugh. But the opposite happened: Both of them knew that night that they had found a life companion.
Lawry, a free-spirited man's man, had always told his friends that hell would freeze over the day he got married. On Feb. 18, 1989, the day of his and Bonnie's wedding, Charlotte was hit with a rare ice storm. Following their reception, the couple climbed into a horse-drawn carriage for the ride to their hotel. As they clip-clopped down a silent, snow-covered road, with the ice-covered limbs of the trees forming a sparkling cathedral overhead, Bonnie remembers thinking that the whole day was like something from a fairy tale. The newlyweds had every reason to believe they would live happily ever after.
The couple settled in Charlotte, but Bruce was soon offered an opportunity to become part-owner of his father's company, Plastics Processing Machinery--but only if he opened a new office in Nashville. The couple looked at the move as an adventure. Bruce came here in January 1991; Bonnie followed in August. They purchased a home in Oak Hill and began building a new network of friends.
Bonnie met Clokie Dixon in the Junior League transfer class. Clokie introduced Bonnie to Tricia Carswell, then director of the Dede Wallace Center. Bonnie's high energy level and bubbly personality seemed perfect for the job of special events coordinator at the Center, and she leapt at the offer. She enlisted Bruce to help with events, teaming him with Clokie's husband, Brian, and Tricia's husband, Ben. The six of them grew very close; when Bruce became a Christian, he was baptized at First Presbyterian Church, where all three couples are members. When the Lawrys' daughter Madison was born in 1994, the Carswells and Dixons became her godparents.
"Clokie was one of the first pieces of the puzzle that was being built for us, though of course I didn't know it at the time," says Bonnie. "But I feel strongly that God put her and Tricia and the other friends we made in Nashville here for me, for us, for when we would need them the most. It's interesting now to look back and see how God was preparing us for this big blow."
After Madison was born, Bonnie left Dede Wallace, got her real estate license, and began a business with close friend Beverly Spellings. As Bonnie recalls, "Everything was going great, maybe too great."
Early in 1997, Bruce began getting vasiculations--small, involuntary quivers--in his arms. In late spring, he noticed that his hands were getting stiff; he was having difficulty with such simple tasks as opening a Coke can. "We weren't looking at it as a big deal. One of Bruce's hobbies is home-brewing, and I thought that maybe he had developed an allergy to something in the brew. We called our regular family physician, and he thought that Bruce might have carpal tunnel syndrome."
At Center Hill Lake that summer, friend Bill Piper noticed a more alarming symptom. "Bruce was a champion water-skier," he says. "He could do anything on a pair of skis. On this afternoon, he was barefoot skiing. He did something really simple, lost his balance, and fell. I had never seen him fall before. We began noticing other things, like, he was having trouble buttoning his shirt."
The Lawrys became increasingly concerned when Bruce again lost his balance performing a simple rollerblade maneuver. Late that summer, walking on the beach at Emerald Isle, he tripped several times and fell. The last incident sent the couple to a neurologist, who began performing tests. Bruce's appointment to receive the test results was on the evening of Oct. 30, 1997. Bonnie asked him if he wanted her to accompany him, but he said no; the doctor hadn't indicated that the appointment was any big deal. So Bonnie stayed home with friends they'd invited over for dinner and pumpkin carving.
Bonnie still gets angry when she recalls Bruce's meeting with the unsympathetic doctor. "[The doctor] made him promise not to go ballistic on her, then asked him if he had ever heard of ALS. He said, 'Isn't that Lou Gehrig's Disease?' She said nothing. He said, 'Are you telling me that I have ALS?' She said she thought so.... She said, 'Do you have any children?' He told her that he had one daughter. She said that we might want to think about having another child, that he should get his affairs in order, and that he had two to five years to live. Then she told him she had an appointment with Johnny Cash and that if he had any questions, he should call her. That was it."
Lawry got in his car in a state of shock and cried all the way home. He called Bonnie into the garage. "He had tears in his eyes. He said, 'Oh God, it's bad, Bonnie,' and he told me. We just hugged, and I said, 'We will get through this.' I went inside and asked our friends to leave. We stayed up all night and talked and prayed. Then we called Sharon and Bill Piper, then Bruce's parents. Otherwise, we weren't going to tell anyone for awhile."
But that Sunday at church, Clokie and Tricia sensed something was horribly wrong and pulled Bonnie aside; she confessed her and Bruce's secret. By that afternoon, there were nearly 20 people in the Lawry home, crying, laughing, holding hands. Clokie remembers the afternoon clearly: "We were in a big circle and praying. Bruce said, 'This is my body, Lord. You do what You want to with it.' It was such an incredible expression of faith, I will never forget it. He and Bonnie have maintained that attitude to this day."
"When we told Clokie and Tricia the news that afternoon, we told them we wanted to keep it to ourselves for awhile," Bonnie says. "They said that now was when we would need our friends the most. And they were right."
While availing themselves of all that the medical world has to offer, the Lawrys have been sustained most through this ordeal by their faith and their friends. What began that fall afternoon in the Lawry living room has grown these past two years into a team composed of family, friends, church members, and a 1,500-strong group of acquaintances and strangers known collectively as the M&Ms, for "might and miracles."
The Lawrys found a blueprint for their incredible support group in a 1993 book by Bonnie's uncle Bob Stone and his cousin Jenny Stone Humphries. Where the Buffaloes Roam tells the tale of Stone's battle with terminal kidney cancer, and the team--called Buffaloes--of friends and strangers that kept him going through the fight; the Buffaloes were asked to send cards, letters, photos, jokes, and prayers. The book, published by Addison-Wesley, has been nationally acclaimed for its advice on, as it says, building a team to support a positive response to a negative challenge. Stone lived five years beyond the three months doctors originally predicted.
Since his diagnosis, Bruce has sent out several M&M letters with family news, health updates, specific assistance requests, inspirational readings, and always jokes. About 100 of the letters are e-mailed; the remaining thousand-plus are mailed. In return, the M&Ms send cards, letters, photos, prayers, books, and more jokes. "When people hear that someone they know has a fatal disease, they don't know what to do, so they often end up doing nothing," Bonnie explains. "We wanted to make it easy for people to do something. The M&M team allows people to share this experience with us. It helps them, and it certainly helps us."
Help has also been forthcoming in more concrete ways. Every Monday for the past two years, someone has brought dinner to the Lawry home, an effort organized by a group at their church. Friends and family have given the couple trips and vacations or have even taken them along on their own vacations.
But more urgent has been the need for the one thing that no one ever likes to talk about: money. A progressive disease like ALS incurs ever-escalating costs. A walker has to be replaced by a wheelchair, then eventually a hospital bed. Insurance will cover some costs, but not the specially equipped van, the computer equipment ALS sufferers use to communicate, the bed, or the home health care workers. The Lawrys have two caretakers, Jason Cross and Scott Douglas, who come to their home five days a week; both men's salaries are paid by the Lawrys.
Friends and supporters have rallied financial assistance in a variety of ways: In September 1998, John Hartung organized a bowlathon. In April of last year, friends in Charlotte produced a marathon that raised enough money to buy a specially equipped van--one that will eventually be donated back to someone else in Charlotte. And in November, Bill Piper chaired a committee that organized and presented "For the Wine of Your Life" at the Stadium Club.
"Bruce and I had done a budget for the year 2000," Bonnie says, "setting out what our out-of-pocket expenses would be for the coming year. It came to $70,000!" When the receipts were tallied from the auction and the sale of nearly 600 tickets, the committee was able to assure the Lawrys that Bruce's medical expenses would be covered for the next year.
"People ask me if I still pray for a miracle," Bonnie says. "Well, we do, and there are miracles around us every day. Bruce is not in pain, he still enjoys a good quality of life. If that fundraiser wasn't a miracle, I don't know what was."
Friends say that Bonnie is Bruce's miracle, that she was put on this earth for Bruce, and that Bruce was put on this earth for the rest of us. "Bonnie makes sure there is always something next for Bruce," Clokie says. "Always something for him to look forward to--a trip, or dinner with friends, a movie, or a date. It's never a downer to go to their house or be with them. You always end up laughing and having a good time."
"It is my job to be his cheerleader," Bonnie shrugs. "If there is something he wants or wants to do, then it is my job to do it for him. 'For better and worse, in sickness and in health'--that's what our marital vows said, and we believe that. I know that if the situation were reversed, Bruce would do this for me with a gracious heart. That is what love is."
The Lawrys are well aware that there are ALS patients who suffer far more than they do--patients who don't have their faith, their love, their resources, or their support system. But the fact remains that Bruce Lawry is dying. The hardest thing for him to accept is no longer being able to throw daughter Madison in the air, knowing he won't see her grow into a young woman.
"Madison knows Bruce is going to die," Bonnie says. "But she also knows he will go to heaven and...that makes her feel better, though she is sad that she won't see her daddy anymore." For Bonnie as well, it comforts her to believe that Bruce will be going to a better life. "I know Bruce will eventually be healed, if not in this life, then the next. What keeps me from going crazy through all of this is that I know he will always be there for Madison and me. He will be our guardian angel."
Bruce and Bonnie have already begun making plans for his death and burial. He wants to be cremated, he explains, because he wants the last word on the disease, by burning it out of his body. He will have some of his ashes placed in the columbarium at their church, so that Madison will have a place to visit her father whenever she wishes.
His last wish for this earth is that his friends and family gather for a party in Lake Norman, N.C., where he grew up. He will write something before he dies for Bonnie to read and choose the music he wants played. As the celebration of his life draws to a close, everyone will gather by the edge of the lake. Someone will launch a specially constructed bottle rocket containing the remainder of his ashes. As those he loves watch its ascent, the rocket will soar into the heavens before it explodes in a glorious finale. It's one hell of a way to go--one that will no doubt leave everyone with smiles on their faces, just the way Bruce Lawry wants it.
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