Companions in Courage

by Pat LaFontaine

  22

  John Cullen

  John Cullen absorbed many hits as a star center for the Pittsburgh Penguins and the Tampa Bay Lightning, but none flattened him like the news he received in the spring of 1997.

  He went to the doctor to check out his flulike symptoms and the X-ray/CT scan showed a baseball-size tumor in his chest. He had non-Hodgkin’s lymphoma. But he was a picture of perfect health and superb conditioning. NonHodgkin’s lymphoma? Impossible!

  John recovered from the shock of the medical findings and began a rigorous regimen of chemotherapy and exercise. “He lost his hair and had pain from the chemo, but he worked right through it,” said John McCortney, his personal trainer. “He ran, lifted, everything. He got stronger.”

  The tumor disappeared in September 1997, but John’s body still housed cancer cells and doctors told him he had a fifty-fifty chance of survival. His season was finished without ever beginning, but his number 12 took the ice in every game, worn on the uniform sleeves of his teammates in tribute to their valiant colleague.

  While his teammates battled on the ice, Cullen fought for his life off it. John began another round of chemotherapy and radiation. He had his weights and a stationary bike brought to his room. Even though he was too weak to use them, they provided incentive and gave him the motivation to fight this terrible disease.

  In early October a nurse and Cullen’s wife, Valerie, were wheeling him to a radiation treatment when, suddenly and without warning, he slumped in his chair. The nurse checked his pulse and found nothing. His heart had stopped beating. Doctors heard her screaming, “Code Blue! Code Blue!” and rushed to revive John with a defibrillator.

  Sure, it sounds like one of those television shows. But if there was going to be a happy ending, no one could imagine it. Not long after cheating death, John needed a bone marrow transplant. His marrow had to be harvested, cleansed, and reintroduced. Even though on the second day of the procedure he developed pericarditis, an inflammation of the sac surrounding the heart, John battled the odds and won.

  When John and Valerie returned to Tampa that winter, he was a shell of his former self, frail and weak. He had trouble keeping up with Valerie and his daughter, Kennedy, when they took short walks together. But John began to get his strength back. In April he returned to Boston for a checkup and received good news—the cancer was no longer living in his body. He came back to Tampa with one objective: to play hockey for the Tampa Bay Lightning.

  When he began training camp that next autumn, John didn’t know what to expect. He started camp tentatively, giving himself time to get his legs back and let his body adjust to a different kind of battle—hockey in the NHL. He knew he had recovered his touch when he scored the winning goal in the last exhibition game of the season. It came against the best goalie in the league, Dominik Hasek of the Buffalo Sabres.

  On October 6, 1998, John Cullen took the opening face-off in the Lightning’s first game of the season.

  “Exciting days! But you don’t go through a cancer ordeal, with all the treatment, without changing. I’ve changed spiritually, physically, and emotionally. I don’t want sympathy. It will weaken me,” John said.

  Well, how about a little admiration? No professional athlete had returned to play after undergoing a bone marrow transplant.

  Cullen didn’t play much in the next three Tampa games and then sat the next four. His coach, Jacques Demers, whose wife was battling cancer, approached John about taking an assistant coaching position with the team. John, who was not satisfied with his comeback progress, thanked Jacques for the offer but decided instead to play for Tampa’s IHL team, the Cleveland Lumberjacks.

  He got off to a quick start, but he also came down with the flu and bronchitis, and a nagging fear arose that his body could not endure this rigorous game anymore. John had to face the reality that the bone-rattling checks of professional hockey were too much for him. He returned home to discuss his future with his wife and their friends.

  On November 27 John Cullen retired and accepted the job as assistant coach of the Tampa Bay Lightning. The last twenty months of his life had scaled the heights and plumbed the depths and left him with a lesson learned.

  “Anytime a person plays a game as long as I have it is difficult to say good-bye. I know I have made the right decision,” he said. “It is time to be realistic and move on to a new challenge. My goal was to make it back, and I achieved that. I am grateful to the many people who supported and encouraged me. I went through a lot. I went through extensive cancer treatment and survived. Now I want to get my story out to give hope to people who are battling cancer.”

  He set too modest a goal. He gives hope to us all.

  23

  Jimmie Heuga

  One in a thousand people is stricken with multiple sclerosis. Sometimes that person turns out to be one in a million.

  In 1970, Jimmie Heuga, one of the first American men to be awarded an Olympic Alpine skiing medal, was diagnosed with this progressive, crippling disease of the immune system, in which the myelin sheath that covers nerve endings becomes scarred and the brain’s instructions can no longer get to parts of the body.

  Just as the disease slowly takes away bits of your life, so will the people sworn to protect you. Not out of meanness, but out of love and caring. So the doctors ordered the bronze medalist in the 1964 Innsbruck Winter Games to refrain from any athletic activity. The sport in which he excelled had become too dangerous, and his body couldn’t handle the stress of training.

  How in the world does a great athlete take a blow like that?

  I have been on injured reserve for periods of time and can hardly describe the frustration of not competing. I know I couldn’t wait to return to the ice and I probably drove everybody around me crazy until I could.

  Well, Jimmie got the message that he would never compete on the slopes again. Soon the crippling effects of the degenerative disease began to affect his daily life. His vision would blur and feeling from the waist down would numb. He was supposed to avoid stress. So easy to say. His marriage began to fail, his hero role vanished, and he headed slowly downhill, as if the race was over. By 1975 he had given up and lived as a recluse, frustrated and depressed.

  You’ll read the story later of another of my Companions in Courage, Zoe Koplowitz, whose moment of clarity came from a vitamin pill that she could not swallow. Well, Jimmie’s arrived as he sat by himself, a book in his hand. In his reading he was drawn to a quote by the philosopher Blaise Pascal.

  “‘One of man’s greatest obstacles is to learn to sit quietly in his room,’” Jimmie recalls. “What that quote said to me was, ‘This is the rest of your life. You can sit here and feel sorry for yourself, or you can get back into life.’”

  Jimmie drew this from it: “I just couldn’t stand around waiting for a magical cure.”

  To move forward, Jimmie looked to his past. He rekindled the same spirit in which he had trained for skiing in his youth in Squaw Valley, California. He developed his own cardiovascular workout. This included push-ups, sit-ups, swimming, and bike riding. He slowly got his positive spirit back. In fact he retrieved life itself. Like Zoe, he found more meaning in life by giving to those who suffer.

  In 1984 Jimmie founded the Jimmie Heuga Center for the Reanimation of the Physically Challenged, in Edwards, Colorado. There he developed a revolutionary approach to living with MS, with a focus on physical activity. “I’m the least qualified person to run a medical center,” says Jimmie, “but I do know how to live. You can’t just wait for the lights to be shut off.”

  He did not do all of this by himself. I am once again moved by the companions in Jimmie’s life who gave their love and support and in turn received such a large reward.

  First came romance, with marketing executive Debbie Dana. She was engaged when they met, so he was very cautious about asking her out. She had just been through brain surgery herself and told Jimmie that she felt newly alive and in touch with the world. So Jimmie made his m
ove. “In our next life, I’d like to get together with you,” he said. Debbie responded, “I think this is my next life.”

  Love’s magic did the rest. Debbie’s years of caring for Jimmie, who now uses a wheelchair, epitomize the true spirit of loving. Jimmie is all but helpless. After all these years Debbie has concluded, “In physique, Jimmie is very small. Yet he has so much heart he is the biggest man I know.”

  A second inspiration in Jimmie’s life was his lasting friendship with Billy Kidd, the companion in the 1964 Olympics who came in a whisker ahead of Jimmie for the silver medal. For over thirty years their friendship has deepened. Kidd is on the board of the Jimmie Heuga Center and is godfather to two of Jimmie’s sons. Jimmie in turn is godfather to Kidd’s daughter, Hayley. Their friendship has been an irreplaceable source of encouragement to Jimmie.

  “Jimmie is an inspiration to everyone,” Kidd says. “He doesn’t think about MS as a disability, but as a challenge.”

  And he never could have imagined that he’d win his uphill battles the same way he won the downhill.

  24

  Annie Leight

  Annie Leight had a vision. A vision and a goal. To usher in the new millennium as a time of transition and transformation, she planned to walk 10,000 miles on a route shaped like a butterfly.

  Why a butterfly? To symbolize new times, freedom, personal evolution, in the same way a caterpillar disappears into a cocoon and emerges ready to fly.

  Talk about a huge aspiration. To walk 10,000 miles? And Annie would accomplish her mission—at least in part. She would ultimately complete 3,300 miles of her visionary project, slowed at first by injuries suffered in a car accident, and stopped finally by cancer.

  She had planned to begin in October of 1993, but spent two years recovering and rehabilitating after the accident. And even as she healed, doctors hit her with the cancer diagnosis.

  Annie and her husband, Rob, grieved, but Annie’s walk kept growing in importance. And they decided to make the walk the focal point of her battle against her disease. “Most people assume that when you’re diagnosed with cancer, you’re going to follow a tried-and-true path. What my husband and friends did was give me permission to go on my own journey and to live out my own vision,” Annie said. “My walk had become a sacred task, the outcome of which I did not know. I could do nothing else. In spite of the setbacks, it was my mission.”

  Neither her injuries nor cancer would keep her from her goal. She would walk hampered by the effects of both, but she would walk nonetheless.

  “What I consciously wanted to do was to open my heart and, at least on a small scale, mirror other ways of being alive,” she said. “Everybody should have dignity and respect. Because if we don’t, we don’t have anything.”

  Wow. What a clarity of purpose and sense of meaning.

  Annie began her walk on January 1, 1997. And she continued for eight months, before the ravages of cancer forced her from the road.

  Rick Murrie Stearns, publisher of Personal Transformations magazine, interviewed Annie a week before she died. She was bedridden in a motel not far from where her walk had ended, and she was celebrating every step she had taken.

  “The walk brought me into a relationship with everything at very, very deep levels,” she told Stearns. “Physically, at first, the walk was agony because of all the pain. So the first six months was a conscious commitment, sometimes for five minutes, just to stay with the walk.”

  So how did she cope and continue driving herself?

  “I learned that all we have is now. I also learned that even though I was fifty years old, I could be remarkably resilient. One of the main things I learned was how to stay with something. Being and living in nature much of the time, I learned that there is a softness underlying all of life—a gentleness, a tenderness. Learning to trust that became very important for coping. I could simply be present to anything. The walk allowed me not only to have a connecting point but to have a place where there’s no disconnect. I learned that to be open to life, instead of fending life off, allows for each moment to count. I want to say to everyone: Live your life in the present moment.”

  Didn’t she fear dying?

  “I’m not afraid anymore,” she told Stearns. “I could get back into fear in the next five minutes. I assume fear is always a companion. It is a matter of what kind of allegiance it’s given and how much energy is devoted to it. It’s like breath is there, or like the capacity for joy and love and awe is there. You just don’t have to feed it. I feel that I am in a relationship with God now; like I am one with God. That is real stuff for me, not just conceptual like it used to be. It is no longer a concept. Right now it’s my way of being alive in the world.”

  At the end of their conversation, Stearns asked Annie what thoughts she wanted us to take away from her journey.

  “Stay with your own life,” she said. “Don’t get distracted by trying to be somebody else. Learn to enjoy and be open to the beauty of any moment, even though there may be enormous pain, ugliness, and injustice. Finally, risk opening your heart to love and allow the beauty of love into your life as much of the time as possible.”

  Butterflies vanish with the season, their beauty a memory. Love never ends. Love never fails.

  25

  Travis Roy

  Meet Travis Roy, college graduate. Five years after enrolling at Boston University, there he was, getting his degree in communications in May of 2000. Sadly, Travis could not walk over to the dean, accept his diploma, and enjoy a hearty handshake. There’s more to his story than academic pursuits and the minting of another graduate.

  Travis Roy went to BU to play ice hockey. That’s where his future lay. That would be his career path. But his college hockey career lasted eleven seconds. It had barely begun, yet it—and life as Travis and his family knew it— had ended.

  Travis, a freshman, took his first shift on October 20, 1995, and eleven ticks of the clock later slammed headfirst into the boards. He tried to get up but he couldn’t move. The ominous silence that filled the hockey arena made the tragic scene unfolding on the ice even more scary. The Roy family credo—“Get up. You’re not hurt”—echoed in Travis’s head, but he could not comply. The connection between his thoughts and his body was broken.

  What a sad and horrible fate for anyone. But think for a moment about athletes and the special relationship they have with their bodies. They hone their reflexes, develop wonderful specialized skills, and live fast-paced, action-oriented lives. And in an accident such as Travis’s, suddenly all of it—not only what they worked for but what their core being strove for—no longer exists.

  Christopher Reeve, a fine actor and equestrian, suffered a spinal cord injury in a fall from a horse. You know how he has labored to direct films from his wheelchair, the war he fights just to survive each day. You’ve heard how hard he has worked to raise funds for research into finding a cure for paralysis. Much the same can be said for Marc Buoniconti, a college football player (and son of famous Miami Dolphins linebacker Nick Buoniconti) injured and rendered quadriplegic in a game. And there’s a wonderful story to be told about Tim Strachan, a promising high school quarterback who suffered a horrible neck injury in a swimming accident before he went off to the University of Maryland. Strachan, in a wheelchair, certainly couldn’t play for Maryland, but the school gave him his scholarship nonetheless and he found a new outlet in working the sidelines for the radio station that broadcasts the Terrapins’ games.

  Now Travis’s father, a former Division I MVP at the University of Vermont, knew Travis was in trouble within seconds of that head-on collision. Lee had never seen his son lie on the ice without moving. Brenda and Dodi, Travis’s mother and sister, along with Tim Pratt, Travis’s last high school coach, watched nervously while Lee bent over his son. Travis did not move.

  When Dodi, a nurse, got to her brother, she knew he was in trouble. Her father was crying. Travis’s first words when his father reached his side were, “Dad, I’m in deep s—�
��. My neck hurts and I can’t feel my arms or legs. But, Dad, I made it.” Lee responded, “You’re right, son. You made it to Division I hockey.”

  Travis’s coach at BU, Jack Parker, walked to where his player was lying on the ice. His heart sank when he saw Travis talking. Hockey players move their legs first to reassure themselves that they are going to be able to keep skating. Parker had never seen a player down on the ice who didn’t move his legs and talk at the same time. Travis was placed carefully on a stretcher and taken to Boston City Hospital. X-rays confirmed the Roys’ worst fears—quadriplegia, with a slim chance of recovery.

  Travis’s fourth cervical vertebra was seriously damaged. It had exploded when his head hit the boards. Travis’s brain could no longer send signals to the rest of his body.

  He underwent surgery to stabilize his neck and remove the bone fragments lodged in his spine and back. He came down with pneumonia and developed stomach ulcers from the steroids that were being pumped into his system. His temperature went off the charts and his right lung collapsed. For two weeks he was fed through one tube while he received air through another tube. When the tubes were removed, Travis had to have a tracheotomy in order to breathe. This made it impossible for him to talk. His ability to communicate was reduced to eye blinks, slight nods, and occasional smiles. When asked if he were angry, he shook his head, “No.” Asked if he was sad, he nodded, “Yes.”

  Not much has changed for Travis’s body in the time since the injury. He is still listed as a quadriplegic with a poor prognosis; however, the indomitable spirit that motivated him to become a Division I hockey player is still very much alive and well. How does a talented, hardworking athlete move on after such a tragedy? A review of what brought Travis to that Boston University rink that fateful October day answers that question.