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
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.
(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.
|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
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
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
"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
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
He taught one student on a
Friday, came to school on Monday and learned the student had been
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
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 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."
Norcross: (619) 293-1803; firstname.lastname@example.org