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Woodbury School eighth-graders listen to Scott Carlson talk about his battle with Lou Gehrig's disease.

Suffering from the devastating neurological disease ALS, or Lou Gehrig's disease, Mr. Carlson has had to give up many things he thought made him who he was, as his muscles atrophy and breathing becomes more difficult.

In the process, he discovered he was always more than a composite of those things, and that knowledge is illuminating the rest of his life.

Yesterday afternoon, Mr. Carlson, accompanied by his wife, Hillary, and his brother Glenn, shared his story with 300 Woodbury School eighth-graders. Despite life's hardships, he said, a strong sense of self and the encouragement of loved ones makes even the insurmountable possible. Even while dying, you can love life.

"I felt like someone had taken everything I knew about the world and put it where I couldn't get hold of it," Mr. Carlson said of learning he had ALS, or amyotrophic lateral sclerosis, in 1999. The disease will eventually paralyze him, silence him when he looses control of his throat muscles and force him to breathe through a ventilator, while leaving his brain function entirely in tact.

Most people with ALS live two to five years after diagnosis, such as Hall of Fame Yankee's first baseman Lou Gehrig, who died in 1941. A notable exception is scientist Stephen Hawkins, who has lived with ALS for more than 30 years.

"I was in shock. I kind of went numb," Mr. Carlson said of receiving the news in February 1999. It took a year of exams for doctors to finally diagnose him, after Mr. Carlson noticed a twitch in his right shoulder in 1998 after training for a triathlon.

He was healthy, working as an electrical engineer in Cambridge, Mass., and running, swimming and cycling to compete in the triathlons he'd participated in since 1988.

Scott Carlson talks to Woodbury School eighth-graders about his battle with fatal Lou Gehrig's disease and his choice to face the rest of his life with "a winning attitude."

He'd also just met the woman he would marry, Hillary, a muscle and massage therapist who also loved triathlons. No one in his family had this disease. He thought he couldn't be sick.

But he was. ALS is fatal, without a cure.

"I was depressed, angry," Mr. Carlson said. "But you have to make a decision about how you're going to live your life. Having supportive family and friends makes all the difference in the world."

Three months after he was diagnosed, Mr. Carlson had to stop driving. The next month, he could no longer work. Shortly thereafter, Hillary had to help him wash, dress, eat in their Warwick, R.I., home. In just the past month, his voice has started to waver, a sign he is loosing control over his vocal muscles.

"Everytime you lose something, you go through the emotions of loss," he said, his lean frame cradled in a comfortable armchair in the Woodbury School gymnasium. He smiles, but can't lift his hand to shake yours. "You get better at it as you go, but there will be periods when things seem so hard."

He wears a T-shirt that says "adversity leads to success."

"Life doesn't end when you're facing huge challenges," he tells the students in a calm, contented-sounding voice. "Who I am as a person is not based on the activities I participate in, but what I learned as a result of them."

But anxiety comes in the night, as he lays in bed.

"It's quiet, time to think, and you ask the age-old question, 'What's it like?'," he said of death.

"Having ALS is like walking into a dark room, reaching for the light switch on the wall and it's not there. You're in the dark ... you ask will life ever be better again?" he said. "At that point, it dawns on you the light to get through these hard times has to come from within. And that flame is fueled by the love and support of everyone around us."