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Living the Moment with ALS

Osage's Matt Williams plays with his son Zach, 5, at their home. Matt was diagnosed with ALS, or Lou Gehrig's disease, in January 2006. (SARAH ARONSEN/The Globe Gazette)

By JAN HORGEN, Of The Globe Gazette

OSAGE — There is strength in his voice, calm acceptance in his bright eyes.

“I noticed something was wrong at first when I had trouble holding the kids, kept dropping things,” Matt Williams said. “But you never think it’s something serious.”

It was.

The doctor’s words hit like punch in the gut — Lou Gehrig’s disease.

Also known as ALS, the disease is a degenerative nervous system disorder.

There is no cure.

The diagnosis came in January 2006.

“Life changes,” Williams said, eyes following the antics of his 19-month-old son, Nolan.

It has been a year of growth, of struggle and of acceptance for Williams, 34. A year of not looking too far into the future.

Each day with Nolan, 5-year-old Zach, 7-year-old Emma and his wife, Val, 34, has become priceless.

“Yes, it’s been hard,” he said, “especially for the kids. They see my muscles getting weak. But they’re kids. They don’t see past tomorrow.”

Difficult, too, for a wife standing on the edge of this unfathomable challenge.

“I fought it for a while, but then I saw Matt learning to live in the moment,” Val said. “Even now, I wish I had the peace he has.”

Gaining that serenity was a day-by-day process.

“I went through all the phases — disbelief, anger, wondering ‘Why?’ until I finally asked myself ‘Why not me?’ ” he said.

Somehow, that unanswerable question brought peace.

“And I’m fortunate; the disease seems to be moving slower in me than in many others,” Matt said.

But there are telltale signs, especially in fine motors skills. Once simple tasks — shaving or buttoning a shirt — have become difficult.

He strives to adapt — hold his arms closer to his body, take breaks to conserve energy.

The Williamses go back to Iowa City, where he was diagnosed. They attend an ALS clinic that works with families, helping everyone to cope with problems from the physical to the emotional.

They have also met other families learning to cope with the progressive march of ALS.

“We try not to let the disease rule the roost,” Val said. “We’ve learned to separate big problems from the little things. And it’s amazing how much I used to worry about has become unimportant.”

Realizing stress and fatigue can wreak havoc with the disease, Matt retired in March from his job as a salesman at Leading Edge Ford in Osage.

“Our life is so different now, full of good family time,” he said.

An independent contractor, Val conducts health and wellness seminars. She is now working via the Internet from her home office.

“We’ve grown closer, learned to talk about many things other couples our age don’t,” she said. “We’ve learned to be happy in today, in our time together.”

Theirs is a united yet very individual battle against a silent, debilitating illness that has only one outcome.

“I can’t look ahead, maybe next week but that’s all,” Val said.

“I’m different,” Matt said. “I’m looking forward to spring, to camping this summer, to coaching T-ball for Emma’s team.”

But that’s as far as he goes.

“I can’t look a year into the future.” That, he says, would be too far, too hard.

So they turn to faith, family and friends to make it though the day.

In those, the Williamses say, there is serenity.

“Matt’s the only boyfriend I ever had,” Val said, her voice wistful. “I was 16 when we started dating. And even now, facing this, I wouldn’t change a thing.”

A tender smile slips across his features as their gazes lock — his eyes full of light, her’s dark with emotion.

“I couldn’t image anything different,” Matt Williams said. “Life is good. Every day is wonderful.”

Reach Jan Horgen at 421-0534 or jan.horgen@globegazette.com.



About ‘Lou Gehrig’s disease’

Amyotrophic lateral sclerosis (ALS), often referred to as “Lou Gehrig’s disease,” is a progressive neurodegenerative disease affecting nerve cells in the brain and the spinal cord.

The progressive degeneration causes the motor neurons to die and brain can no longer initiate and control muscle movement.

With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. Yet, for the vast majority of people, their minds remain unaffected.

More information about the disease is available on the Internet at: http://www.alsa.org/als/what.cfm,

— Source: ALS Association.



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Comments On This Story

ANONYMOUS wrote on January 29, 2007 4:47 PM:"MY BOYFRIEND HAS ALS, HE WAS DIAGNOSED A YEAR AGO. THIS IS SUCH A DEVASTATING DISEASE FOR BOTH THE PAL AND THE FAMILY MEMERS. I WOULD SUGGEST SEEING IF THERE IS AN ALS ASSOCIATION IN YOUR AREA THEY CAN HELP YOU WITH EQUIPMENT THAT IS NEEDED OR CAN HELP YOU RESOURCES IN YOUR. MY PRAYERS ARE WITH U."

Reader wrote on January 29, 2007 2:19 PM:"What an awesome story about a young man who has shown that with his strong faith, every day is a wonderful day here on earth. Thank-you for sharing your story Matt. God bless you and your family."

Julia Rhodes wrote on January 29, 2007 1:25 PM:"Having just read the above story I am full of admiration for Matt and Val who have managed to find such peace. I am in the process of applying for a job with MNDA UK as Regional Care Advisor and will certainly be using the story as an example if I'm given the opportunity. I also acknowledge that each person deals with lifes challenges in different ways - but thank you both for sharing your story with me tonight. God Bless you and your family."