Buena Vista’s Huber fights for life, cherishes
wife and work
Nick Huber cherishes his wife and job, but at 27 is fighting for each new day
Nick and Ann Huber were mingling with friends at a Super Bowl party when
somebody asked: What's the first thing you would do if $1 million suddenly
landed in your lap?
"Quit my job," one friend said.
"Me, too," said another.
"Oh, in a heartbeat," another replied.
The question floated around the room until it got to Nick.
"I would buy just about anything I could," he said, "to keep me working."
The last thing Ann Huber does before going to work each morning is drop her
husband off into the waiting arms of his mistress. Nick usually turns up at
Buena Vista University's sports information department a little after 6 a.m.,
when Siebens Fieldhouse is nothing but a cold, dark whisper. One of his favorite
new morning rituals involves piloting his motorized wheelchair out to the
nearest window and watching the sun come up.
"It's like my mentor said, 'Whenever you're doing your job right, it's boring,'
" Nick says, slowly, in a soft, strained voice that breaks your heart. "You've
got to be creative. That's why I love basketball season. We're actually good."
He grins. The eyes glisten. Nick is the 27-year-old sports information director
at BVU, an army of one, the mouthpiece for the Beavers' 17 teams. He was
diagnosed with ALS, amyotrophic lateral sclerosis, Lou Gehrig's disease, on Oct.
15, 2003. A week before his 24th birthday.
"National Grouch Day," Ann chuckles. Irony. "It's always written on my
calendar."
He's a skinny bundle of energy, but his fingers fight him. His arms fight him.
So do his lungs. ALS is a merciless, neurodegenerative disease that attacks
motor neurons in the brain and the spinal cord. Basically, it shuts your body
down, one circuit at a time. There is no known cure.
Many patients die within five years of their initial diagnosis. The average age
of its victims is 55. Nick Huber is a young man. He sleeps with a mask that
assists his breathing. He has spent much of the past four months in a
wheelchair. Before that, he was using a scooter.
He doesn't type anymore. He dictates through a special headset connected to his
laptop. A computer program then converts his words to on-screen text. A team of
student interns helps speed up the production of media guides and press
releases.
"They're my fingers," Nick says.
Ann, a registered nurse, is his rock. She dresses him, feeds him, shuttles him
to and from work.
"It's gradual," Nick says of ALS. "But in a way, it's fast."
So fast. Too fast.
Before the Beavers' men's basketball team was to tip off against Augustana
(Ill.) in the Division III playoffs last March, coach Brian Van Haaften asked
Nick to address the players in the locker room.
Live for the moment, Nick told them. Embrace it. Cherish it. Life throws you
curveballs. Look at me.
"No matter what, you're not going to be with the same guys again, the same
coaches," he said. "Appreciate what you have when you get an opportunity."
Van Haaften makes it a point to try to visit the sports information office at
least once a day. Before road trips, his players will stop in to see Nick and
say "hi" on their way to the bus.
Since Nick was hired in the fall of 2004, he and Van Haaften have become good
friends. Maybe it's because both hold their work to high standards. Maybe it's
because both are among the best in the Iowa Conference at what they do. Maybe
it's that they're both Chicago Cubs fans.
"He's a lesson in his own right," Van Haaften says. "I mean, you look at him
right now. He's in a wheelchair. He could crawl in a hole and say, 'You know
what? I'm done.' And he would be. He doesn't have to be this way. But you know
what? He is. He's an awesome guy."
Officials at BVU knew Nick had been diagnosed with ALS when they hired him. They
didn't care. He'd floored them during the interview process. He vowed to make
the Beavers' Web site the best in the league. He promised to get BVU box scores
up on the Internet faster than any rival school.
Then he went out and delivered.
"I think everybody's wishing they could do something," baseball coach Steve
Eddie says. "But maybe we just need to learn from him."
She was soaked. Soaked, hungry and tired. Ann had made up her mind: It was the
worst day of her life.
This was a few years ago, when Nick, not exactly the outdoors type, had decided
to take them camping along the boundary waters. Naturally, the canoe tipped over
during the trip. Naturally, there were snakes all over the place.
Ann was getting ready to start making dinner when Nick pulled her down to the
banks. He wanted to show her something.
"I took your advice: I got a pet rock," he said mysteriously. She'd been teasing
him lately that he needed to get a pet rock. "But I don't think I could take
care of this one by myself."
With that, he pulled out a diamond ring and asked her to be his wife.
Nick and Ann had met as freshmen at Luther. They were engaged when the
neurologist told Nick that the odd twitching under his skin - like worms - was
the early stages of ALS.
When he told Ann, he expected that she might want to call the whole thing off.
Heck no, she said. We're doing this. So they moved the wedding up to November
2003 - a month after the diagnosis - to give themselves more time together as a
couple.
"They tell it like it is to each other," Eddie says. "If one of them's not happy
with the other one, they're not scared to say it. They're so compatible."
Hand in glove. A team. When Nick went to Beijing, China, in December 2004 for an
experimental treatment, Ann came along. "A leap of faith," she called it.
They drilled two holes at the top of his head and injected stem cells. The next
day, Nick's walking improved. But the sensation was gone within a few weeks. The
deterioration continued its slow, relentless march.
The Hubers are planning ahead, so Nick can stay at BVU for as long as physically
possible. He's seeing a speech therapist. They're shopping for an
eye-recognition program that would allow him to "look" at words or letters so
that they could be typed without the use of his hands or his voice. Maybe
insurance will help with that. Maybe it won't.
"One of the things that keeps me going," he explains, "is this job."
This mistress. Nick is keeping a journal of his experiences through a blog (www.nickannstreet.com/blog/),
in which he cleverly tackles topics that range from the Bowl Championship Series
to the stem cell debate. He's thinking about writing a book.
"I believe we'll get a real treatment in the next five to seven years," Nick
says. "Will it be 18 months or 18 years? I don't know."
Another grin. The woman he loves. A career he adores. For now, the way he sees
it, he has the best of both worlds, dancing with a dream and a nightmare in the
same slow song, smiling with every step
MGM
© ALS Independence 2003-10