Dying athlete provides youths with lesson in handling setback

By Barbara Huebner, Globe Staff, 4/9/2000

ARWICK, R.I. - In his 35 years, Scott Carlson has crossed the finish line of triathlons, surfed off the Nicoya Peninsula in Costa Rica, skied the black diamonds of Jackson Hole, played sweet guitar in a three-man band, immersed himself in a career he loved. Get up at 5:30 a.m. to train with his ''Team Psycho'' buddies? No problem. Work 16-hour days writing software? What a rush. Go for a hilly eight-mile run before skiing all day at Mad River? Let's roll.

In his 35 years, Scott Carlson has been a guy who knows how to live.

Now, he's learning how to die.

A former training partner of world-class triathlete Karen Smyers of Lincoln, Mass., Carlson in 1997 began to notice a twitch in his right shoulder. Soon his thumb became weak; then, his whole hand. Holding his head up became an effort. His left arm wasn't acting right, even as quivering in his other arm got worse.

Early last year came the brutal diagnosis: amyotrophic lateral sclerosis. Known as Lou Gehrig's disease, ALS is a progressive disease that lays waste to nerve cells of the brain and spinal cord, eventually causing them - and the patient - to atrophy and die. From the moment of diagnosis to the day of death averages three to five years. There is no known cure.

Now, as Smyers prepares for a triathlon on April 16 that could land her on the US Olympic team, Carlson struggles to hold a fork. Where in 1996 he ran the 100th Boston Marathon, this year eight of his friends will run on his behalf on April 17 to raise awareness and money for ALS research. It's a campaign Carlson spearheaded, but may have to watch on TV to avoid exhausting himself.

Yet there is no bitterness.

''A lot of people choose to fight for their past life,'' said Carlson, sipping iced tea through a straw because he can no longer grip a glass. ''I'm ready to live the next one. I have new things to find out, new experiences to live. It's not defeatist to say I closed a chapter.''

Among other things, Carlson has traded his surfboard for a stage, and has begun visiting classrooms near his Warwick home to tell students to set goals and believe in themselves despite the setbacks they inevitably will face.

On April 1, he addressed an elite group of high-school sophomores at a Hugh O'Brian Youth Leadership seminar in Exeter, urging students to work on their weaknesses with the same gusto they devote to their strengths, telling them the reason he has no regrets as he faces death is that he always did what he loved. The title of his speech: the acronymic ''Adversity Leads to Success.''

He hopes to keep speaking to as many groups of young people as he can, for as long as he is physically able.

''In a disease where you lose all communication, it's got to be done now,'' said Carlson of his desire to reach out. ''While I have a voice, I think it's important to let people know what it's like. You should be more conscious of your life, and realize what you have instead of what you don't have.''

It's a message not lost on the adults around him, either. ''Everyone who knows Scott,'' said his courageous wife of less than a year, Hillary, ''now has an alternate viewpoint on life.''

For 10 years, Carlson trained for and raced in triathlons, including a 1994 Ironman (2.4-mile swim, 112-mile bike, 26.2-mile run) on Martha's Vineyard, and fulfilled another dream the same year by running a marathon in less than three hours. But, three years later, the shoulder twitch began.

''Then it started that his arm would be fatigued,'' said his friend and ''Team Psycho'' training partner, Glenn Cunha of Dorchester. ''I sent him to my chiropractor.'' Before long, he had to skip the Friday night swim sessions, catching up with the gang later at Bertucci's.

By February 1998, Carlson was seeing a neurologist, who was the first to detect weakness in his right thumb. A battery of tests - MRI, EMG, blood, for Lyme disease - yielded no conclusive information.

''You want these results now,'' Carlson said, recalling his frustration through those long months. ''They were coming up with nothing. You learn to become a patient patient.''

In May 1998, ALS was raised as a possibility for the first time, and Carlson felt as if he'd been kicked in the stomach.

''I walked out of there and all I wanted to do was kill him,'' he said.

Carlson can't recall the date of the diagnosis, but it came around the same time he and Hillary Phipps, a surfer he met when she was lifeguarding in what was to be his last triathlon, eloped last May 1. ''I made a very serious choice,'' she said tenderly. ''A lot of love, that's what it really comes down to.''

Throughout 1998 and 1999, Carlson lost, one by one, the activities he loved. Having already lost the fine motor control needed to hold a guitar pick, now he could no longer shift his bike or control a ski pole. His final attempt at surfing - ''You can hear the board sliding through the water,'' he said wistfully of catching a perfect wave - came last June off Block Island, when he paddled out but couldn't manage to stand up on the board.

He stopped working last June 11. He has had to give up driving, and his wife must cut his food and help him shower. Whereas once he eagerly attacked the gnarliest ski run, these days it's a monumental task to get dressed in the morning. And it will only get worse.

''I get depressed,'' he acknowledged. ''You've got to come out of it. You just have to focus and live.''

So Carlson has chosen to look forward, hoping that by giving young people a glimpse of his journey they will make better choices in their own.

In a visit last winter to a seventh-grade class at Western Hills Middle School in Cranston, Carlson brought along a large, framed photo of Lou Gehrig and Babe Ruth, taken before ALS forced Gehrig to retire from the Yankees on July 4, 1939, and a tape of Gehrig's famed speech in which he said that, despite his illness, he considered himself ''the luckiest man on the face of the Earth.'' Why, Carlson asked the class, would a man who was dying consider himself so lucky? Silence.

Boyish and in blue jeans, his denim shirt open to reveal a T-shirt touting the ''Dinosaur Bar-B-Que,'' Carlson had to ask for a volunteer to hold the photo because he was too weak. When one boy asked if his disease would keep getting worse, Carlson reiterated: yes, it's fatal.

''It was very intense,'' said teacher Cindy Grady, of the students' reaction in the days after Carlson's visit. ''At this age, they think they're immortal. It opened their eyes a little bit, and it was somewhat humbling to know this could happen to anybody.''

Fortunately, the disease is progressing slowly. How Carlson's athleticism is affecting its course is unknown, because there is no firm data on the relationship between exercise and ALS, but his lung function - a key predictor of life span - remains excellent, probably because he was so active, said Dr. Merit Cudkowicz, co director of the ALS clinic at Massachusetts General Hospital.

His attitude, said Cudkowicz, is as good as his lungs. ''He's basically upbeat,'' she said. ''He spends a lot of time doing other things he enjoys, not just thinking about ALS, and I think that's helpful.''

So, too, he and his friends are convinced, is the mental strength he gained from years of pushing his body to its limits, then pushing a little harder.

''You're not feeling so good and you learn how to handle it, fight through it,'' said Smyers, who is battling a slow-growing form of thyroid cancer even as she trains for the Olympic Trials. ''And I'm sure learning to play the guitar is very different from training for triathlons. He has a lot of things to draw on, to put them all to use somehow to find a new path.''

One reason that path has not been rougher, said Carlson, is that he never defined himself by his sports, or his music, or his job. It is a message he hopes the kids will hear. ''When everything you did is gone, if you based your self-esteem on what you did, you're in big trouble,'' he said. ''You have to accept who you are, and move on.''

Perhaps the final step to putting closure on his life as an athlete came last fall, when Carlson and his wife went to watch Smyers, Cunha, and other friends race in the Hawaii Ironman through the lava fields of Kona. It was a race Smyers had won in 1995, and in which Carlson had always longed to compete. Despite the hardship of the lengthy trip, he refused to stay behind.

''Going to see that race, I've seen the successes and trials that come along with doing it, and what it means to everyone who's there,'' he said. ''If I had ever done it, it would have been the same for me.''

But moving on, however necessary, brings its sadness. During the week, Carlson sneaked around to make a surprise video on which everyone recorded their good wishes for Smyers, who would go on to finish second. ''It was pure emotion,'' Smyers said of her friend's message, recalling how she and her husband cried while watching the tape the night before the race.

In the video, most of which is lighthearted, Carlson appears last. He is somber. '' You got to go have fun,'' he tells the camera, pausing to compose himself as a tear trickles down his left cheek, ''because that's what life's all about.''

This story ran on page B01 of the Boston Globe on 4/9/2000.