Johnny Blais is a spirited, veteran triathlete known simply as 'Blazeman' to his friends. The former San Diegan, diagnosed with Lou Gehrig's disease, will compete in his first Ironman next month, hoping to raise awareness of the affliction.

September 25, 2005

Courtesy photo Johnny Blais

First came the twitching in Johnny Blais' triceps and chest. Then the muscle between his left thumb and index finger began to atrophy. He started dropping things – keys, a bar of soap, his toothbrush.

"I thought maybe I had a pinched nerve," Blais said.

Then his fingers on his left hand began to curl. His jaw, then the back of his neck, started to swell.

A doctor wanted to perform a spinal tap last May, but Blais, 34, had logged onto the Internet, studied his symptoms and told the doctor not to bother.

Challenging the physician, Blais said, "Look dude, tell me I don't have ALS."

The doctor stared at the ground, then said, "Well, I'm concerned."

Recalled Blais: "He was almost going to cry."

Blais' self-diagnosis proved accurate. Commonly known as "Lou Gehrig's disease," amyotrophic lateral sclerosis causes the motor neurons that control the muscles to slowly degenerate. Those stricken lose their ability to walk, talk, swallow and then breathe. The mind remains unaffected. There's no known cure for the disease. Life expectancy after diagnosis is 2-5 years.

How to help For information about ALS, and for ways to help find a cure, go to Johnny Blais' Web site, www.alswarriorpoet.com, for links to several organizations. Or, go directly to the ALS Association at www.alsa.org or the ALS Therapy Development Foundation at http://als.net

Blais (pronounced blaze) moved to San Diego in 1995 "because it's the triathlon mecca," he said. He epitomized San Diego's active lifestyle, cycling back-country roads, rock climbing at Mission Trails, hiking in Yosemite and mountain biking in Moab, Utah.

Three months ago, Blais moved back to his hometown of Seekonk, Mass., to be with his family.

"Because I'm going to become immobile, a total invalid," Blais said by phone.

Blais' attitude about his fate isn't moribund but pragmatic.

"I've been around friends in wheelchairs, friends that died," he said. "Friends that lived boring lives and never lived. I'm definitely a realist, a hopeless romantic. I'll never be able to be married, have kids.

"What are you going to do? I have a job to do right now and that's to raise (ALS) awareness."

A friend of Blais' contacted the World Triathlon Corp., which owns the Ford Ironman Triathlon World Championship in Kailua-Kona, Hawaii, and told someone about Blais' condition.

A triathlete since his teens, Blais dreamed of racing at Ironman Hawaii. Come Oct. 15, he'll get that chance. The WTC has awarded Blais a spot. According to WTC representatives, no one with ALS has attempted Ironman Hawaii.

While Blais' body is weakening, he can still swim, bike and run. He swam 30 minutes the other day in a neighbor's backyard pool. He cycled 50 miles on a ride last weekend and recently hiked 10 miles.

Were he healthy, Blais figures he could complete the race in 101/2 hours. Now, to heighten ALS awareness, he simply wants to finish before the midnight, 17-hour deadline.

"Finishing the race is huge for me," he said. "No one is beating ALS. No one has done anything but walk away and die."

Friends and family alternately describe Blais as passionate, rebellious and stubborn. His nickname: Blazeman. Diagnosed with attention deficit disorder as a kid, Blais was told by a principal that he should attend a trade school, that he'd never graduate from college.

He graduated from Rhode Island College and became a special-education teacher. During a Spirit Week pep rally when he attended high school, which coincided with a national safe-sex movement, Blais, dressed in just his underwear, a purple cape and wig, sprinted about the gym, tossing out condoms and safe-sex literature.

"Condom Man! Condom Man!" the students shouted.

"Needless to say, we got called into the principal's office on that one," said Blais' mother, Mary Ann.

Blais taught for one year in the San Dieguito Union School District, was frustrated by how much time he had to spend with parents, then taught the next six years at Aseltine School, a private school in Hillcrest that serves students with behavioral and emotional issues.

There were challenges at Aseltine. Blais said one student told him, "I'm a success story. I'm 13, and I haven't been to juvenile hall."

He taught one student on a Friday, came to school on Monday and learned the student had been killed.

Said Blais' mother: "He always had a sense for the underprivileged student who had a difficult time, because he did."

For a recreation and leisure class, Blais took students hiking at Balboa Park and Torrey Pines State Reserve. He took students swimming at La Jolla Shores, rock climbing at Mission Trails and mountain biking in the Cuyamaca mountains.

"A lot of our kids don't believe they can do much," said Byron Dawson, the conflict resolution coordinator at Aseltine. "The first (hiking) trip a lot of them would be whining and complaining. 'I can't. It's too hard.' Later, you saw some kids who were excited about the progress they made."

About Blais leaving the school, program coordinator Carol Patton said: "We had a very hard spring and summer. It was devastating to us (learning he was suffering from ALS). He brought a special perspective to teaching. He wanted to make a difference, and he really did."

Living up to his Blazeman nickname, Blais likes to challenge the status quo, to do the unusual. So when he was living in La Jolla he'd leave his home at 3 a.m. on Fridays, loaded down with a 65-pound backpack, then walk 14 miles to Aseltine.

Why?

"Why not?" he said.

He writes poetry and is an avid photographer. His Web site: alswarriorpoet.com. As for how he's feeling now, 20 days before Ironman Hawaii, Blais likened his condition to Mel Gibson's character, William Wallace, in a scene from the movie "Braveheart."

Said Blais: "At the end, they've made a bunch of spears, and Gibson tells his soldiers, 'Hold 'em, hold 'em, hold 'em' before the enemy approaches. That's where I am. I'm holding. I've got three more weeks of holding."

 Don Norcross: (619) 293-1803; don.norcross@uniontrib.com