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William Lauer revealed how he will die during a meeting at his favorite bar.

That sounds like a production.

It wasn't.

He made no toasts, drank no beer and shed no tears. Instead, he and a trusted friend met at O'Rourke's Tavern one morning last fall and tried to treat it like it was no big deal.

Without explicitly saying so, William told his friend he has decided he will suffocate.

He reached this decision after finding himself on a path people literally pray they won't have to walk.

He has amyotrophic lateral sclerosis, or ALS -- commonly known as Lou Gehrig's Disease. He's one of about 30,000 Americans diagnosed with the illness. It is fatal ... always.

This is the story of William's walk over the past 21 months. The first steps after his diagnosis were depressing, painful and burdened with unanswerable questions. But somewhere along the way, it turned hopeful.

With the help of a lot of friends, he has put the hope in it.

Now, back to the bar.

The former photojournalist met O'Rourke's co-owner Doug McLeese to hand off an important document: advance directives. As William's legal executor, Doug will make sure his friend's end-of-life wishes are followed if William can't speak for himself.

William's neurons are rapidly degenerating, which means his brain will continue to lose the ability to send messages to his muscles. As his muscles fall out of use, they will atrophy.

He won't be able to stand or walk.

He may not be able to feed himself or speak.

Total paralysis could be on the way.

The two friends briefly discussed the contents of the document.

"No trache tube ventilators," William said.

"Stomach tube?" Doug asked.

"A lot of ALS patients die of starvation," William responded.

So far, the disease hasn't affected his ability to talk or swallow, so he's betting he'll be able to eat until close to the end. It's the sort of dispassionate analysis many people would find impossible to do for a loved one, let alone for themselves.

William made his decisions after gathering all the information about ALS he could find. Confronting the reality of his impending death matters to him.

But more than almost anything, he wants to share that information so others will understand just how dreadful the disease is, and maybe, what they can do to help.

So, William calculates he won't starve.

One day, however, his fully functioning brain will send a neural impulse for his diaphragm to contract, but his diaphragm won't respond. The bundle of neurons that have carried the impulse to take a breath countless times in his 50 years simply won't be delivered.

William made it clear -- he wants no ventilator when that moment arrives.

Then he and Doug shook hands, hastily embraced and went about their day.

***

Shortly after he learned he had ALS, William shot a volleyball match.

He'd gone through a battery of tests after his physician noticed involuntary muscle twitching in his left shoulder. He showed up for the late afternoon appointment on Oct. 27, 2009, expecting to get a referral for shoulder surgery.

Instead he heard, "It's fatal."

His thoughts jumbled and his head swam. He grasped to make meaning out of the words the neurologist was saying.

"I didn't even know what to ask," he said. "I didn't know a whole lot about it. I couldn't have told you anything about ALS."

So he thought about his assignment.

At that time, he'd been the guy behind the camera with the salt-and-pepper scruff and the untucked shirt for a dozen years for the Lincoln Journal Star.

Among co-workers, he was known for his sharp opinions and blunt honesty. Some would describe him as utterly without diplomacy.

"I don't like stupid people," he has been known to say.

His supervisor, Ted Kirk, called him the staff foil, largely because William relished taking up an argument just to play the contrarian.

"If I called this black," Kirk said, pointing to black in a photograph, "he would say, 'This is 100 percent gray.' "

"Not true," William shot back with a smile.

But he also offered limitless guidance and patience to photographers getting their starts. And when he praised a colleague's work, the recipient knew it was genuine.

Single and childless, William dedicated himself to photojournalism. He sought assignments where he had a chance to make a difference. He won awards and impressed readers with his ability to tell stories with shadow and light.

He was respected.

Now, just 30 minutes after hearing the hardest thing he would ever hear, he had a Husker volleyball match to shoot. He did the only thing he could: the job.

After he turned in his photos, he ran an Internet search on ALS. One fact stopped him cold: Half of all patients die within three to five years of diagnosis.

"I thought, 'My God, that's fast.' That's when it really hit me."

He made his first call, to Joellen McGinn, with whom he once lived.

"I've got some bad news ..."

That's when he broke.

***

He and Joellen went to the Mayo Clinic in Rochester, Minn., for a second opinion and two days of tests.

The diagnosis was confirmed.

"Telling people was the hardest," William said. "I felt guilty causing them pain."

He told his four brothers and his sister.

He told his closest co-workers and friends. He'd spent years tending bar in some of the most popular bars and restaurants in Lincoln, and he had lots of friends to tell.

One of the last people he told was his father. They are not close. His mother is deceased, and they were not close, either.

Joellen recalled their conversation the morning they walked out of the Mayo Clinic.

"I said, 'William, there's no guarantee that any of us will be alive tomorrow. He just kind of laughed, 'Yeah you're right. You want to go get some lunch?' "

***

William once was a highly competitive racquetball player. As he grayed, he took up golf with the same enthusiasm, and he enjoyed running, biking and lifting weights.

He quickly realized he wouldn't be able to do any of it for much longer.

"It’s like someone you love dies,” he says. "That’s exactly how it felt … but it was me."

It was just more shock piled on the trauma. He knew depression was lurking, because he struggled with it well before the ALS diagnosis. He sought help again.

Early on, an ALS care provider told him something that hit him like a slap.

This is how you're going to die.

Denial isn't just a pop psychology term. It's what lots of people do, especially when confronted with a fatal illness.

He needed the slap. He had to accept what ALS meant to him, not to a long-ago Yankee first baseman, but to William G. Lauer.

Then his psychologist gave him a piece of advice he has held onto like a precious stone.

"Live like I'm living," he said. "Not like I'm dying."

***

William had been independent all his adult life. But he needed help from people who know about ALS.

That led him to the Keith Worthington Chapter of the ALS Association, which serves patients in Nebraska, Kansas and much of Missouri. Its Nebraska office is in Omaha.

The chapter staff gave him information he needed to confront ALS. He joined a support group and attended meetings. He read everything he could about the illness and was dismayed at the lack of progress toward a cure.

ALS was identified in 1869 by a French neurologist. Even though Gehrig, the disease's namesake, died in 1941, his killer remains shrouded in mystery. Scientists don't know what causes it, and there is no treatment. One drug is approved for ALS -- one -- and it adds only a few months of life expectancy.

For decades, relatively little research was done on the disease. It didn't take long for William to connect the dots.

"We die, so that makes it a hard disease to do research on."

Because the disease is so catastrophic and most patients have so little time, interest in participating in research runs low, said Shannon Todd, care coordinator at the ALS Association in Omaha.

Still, since the 1990s, research has grown, in part because of a higher incidence of ALS in veterans from Operation Desert Storm.

"Right now, research is quite amazing," she said. "Biomarkers, combination drug therapies, stem cells, global studies."

The two largest funders of ALS research are the National Institutes of Health and the association. In 2010, the NIH devoted $59 million to research, and the association spent about $5.5 million.

In comparison, NIH research funding alone for cancer, heart disease and diabetes all ran into the billions of dollars. Of course, those diseases affect more people than ALS.

Statistically, two out of every 100,000 people have ALS. But advocates say the disease often is misdiagnosed as cancer, depression, heart failure or anemia. They argue the true number is more likely five to eight per 100,000.

While it's true that awareness of ALS among the general public has lagged behind other illnesses, Shannon Todd said that's changing. When she started her job five years ago, she worked with 35 patients in Nebraska. Now she has 75.

The circle of people who have a relative or friend with ALS continues to grow, which pushes the need for even more research and providing care to the caregivers.

And no one pushes for change more effectively than the patients themselves.

"Some people want to curl up and not want to deal with the world. Some want to jump in and do more. Some people want to ... fight," she said.

William jumped and fought.

He enrolled in a clinical study investigating the effects of large doses of an antibiotic, which requires daily injections through a permanent drug port in his jugular vein. He also is participating in a speech study at the University of Nebraska-Lincoln.

He has gone to Washington, D.C., twice to participate in National ALS Advocacy Day.

But he wanted to do more.

***

Rick Poore of Lincoln is one of William's oldest friends. They met in the 1970s while Rick was a waiter at Tico's and William was a busboy.

Over the decades, they cemented their friendship on a mutual love of vintage wine, gourmet food and good books. And, by engaging in verbal donnybrooks.

"William would get right in your grill," Rick said. "William would call anybody on anything. That's William. It never bothered me too much. We'd scream at each other, but you don't hold grudges as friends."

During the months after the diagnosis, lots of people approached Rick asking how they could help. So Rick went to his friend with the idea of putting on a golf tournament, raising money to help pay for his care.

Not surprisingly, William didn't like the idea.

A golf tournament for ALS was great. But he didn't want the money. He had good benefits at work, and he had arranged to go on Medicare and disability when he had to. He knew other ALS patients were struggling more.

One thing led to another, and he and his friends started the William G. Lauer Foundation for ALS and Charities. They incorporated as a nonprofit, held board meetings and raised $27,000 at their first scramble last year. Of that, $5,000 went to the ALS Association and the remaining proceeds were set aside to start an endowment.

They're working on a second Tee Off Against Lou Gehrig's Disease tournament Aug. 7 at Highlands Golf Course in Lincoln.

William's foundation also raised money through a croquet tournament and an ice cream tasting night at Ivanna Cone in the Haymarket.

Foundation board members want to create a fund to help ALS patients with quality-of-life issues.

The foundation has given William something to focus on. In part, he views it as a way to leave a legacy.

"I will never live to see a cure discovered, but that doesn't mean I can't help the patients that will follow me."

***

The students at Lincoln East High School filed into the auditorium last winter, slipping off their backpacks and taking their seats.

After they quieted down, Keelan Chapman explained his DECA leadership project was devoted to the ALS Association. That meant raising awareness, and that led him to William.

The former photographer sat on stage as a slideshow of his work flashed on a screen behind him. As the images burned on the screen and then faded, William narrated his life with ALS.

Bill Clinton ... Chuck Hagel ... Barack Obama ...

"I never thought I had a story to tell. I'm still not sure I do."

Ndamukong Suh ... Kori Cooper ... Bo Pelini ...

"I'm not a spiritual person, but I kind of believe in that whole thing of what goes around comes around. Do good, and it comes back."

Woman brushes a buffalo's teeth ... couple walks down street wearing pythons like mink stoles ... officer finds hidden bong while on party patrol ...

"The disease is physical. You can see my sharp mental abilities haven't been affected. Neither have my good looks."

Oglala Sioux confronts Nebraska State Patrol in Whiteclay ... soldier embraces loved one upon return from Iraq ... seminarians practice Gregorian chant ...

"The only thing I really want to do is live at home," he said, pausing to collect himself. "That's my bucket list, I want to live at home and do things that are normal."

***

He bought the house just months before his diagnosis, the first one he's ever owned.

Years before he got sick, he traveled to India, Ireland, France and all over the United States. So staying put is what he wants to do. He intends to seek hospice so he can die at home.

Within months of his diagnosis, he could no longer lug around heavy camera equipment. He left the Journal Star in November 2010. By then, golf was a memory. He stopped driving a few months later.

Staci McKee of Washington, D.C., was a colleague of William's while they were student photographers at the Daily Nebraskan and briefly at the Journal Star.

Staci said she has always appreciated his honesty and the bright, funny, generous person beyond the rough exterior.

When he was diagnosed, she ignored the two- to five-year statistic. William was so healthy, so active, she figured he would make it 10 years or more.

She saw him when he went to D.C. in May, and then she visited Lincoln a few weeks later. She hated that she could clearly see him slipping physically in just a few weeks time.

"That's been very difficult to watch," she said. "Reality is catching up."

Today, William has nearly lost the use of his arms and one hand. He finds it difficult to stand and walk. Wheelchair brochures lie on his coffee table.

And so the formerly independent 50-year-old has had to learn how to ask for help, and how to accept it. His co-workers poured a new concrete driveway at his house last spring and spruced up his yard.

Other friends pick him up for appointments and social outings, and they've recently started making his meals. His brother, Noel, mows his lawn and scoops his walks.

He's humbled by so many gestures of concern and love.

ALS allows William to focus on what's important. Everything else slips by.

What could be more normal?

"Since my diagnosis, there's no question I've had some of the best days of my life."


Colleagues and friends Joe Duggan and Eric Gregory walked the first 21 months of William Lauer's journey through ALS with him, documenting the progression of the always fatal disease. These photos by Gregory give an unflinching look at the trip so far.

Reach the Journal Star city desk at 402-473-7306 or citydesk@journalstar.com.

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