Ride For Life: SON PITCHES FOR DAD IN FIGHT AGAINST ALS

Copyright 2003 Dayton Newspapers, Inc.
Dayton Daily News (Ohio)
June 20, 2003 Friday CITY EDITION
SECTION: LOCAL; MARY MCCARTY; Pg. B1
LENGTH: 1636 words
BYLINE: MARY MCCARTY

Anybody who grew up with Jim Williams - heck, anybody who ever met him - remembers, first and foremost, That Smile.

It was a smile that burned as bright and relentless as the summer sun on the asphalt driveways of Robertann Drive.

It was a smile so irrepressible it got its owner in trouble. High school teachers would pull him aside in the hallway, suspecting him of insolence - although, of all of us Robertann Kids, Jim was the very last one to have been guilty of that.

It was a smile halfway between Jim Carrey and Bugs Bunny, a smile that never dimmed during the three years he battled ALS, the fatal, neurodegenerative disorder better known as Lou Gehrig's Disease. "Even at the end, he'd say, 'Hi Mom,' and there was that great big smile," recalled his mother, Rose Williams of Centerville. "And even when he couldn't talk any more, he was still smiling."

On Thursday, folks could smile through their tears when Williams' 15-year-old son, Evan, threw out the first pitch at the Cincinnati Reds game on what would have been Lou Gehrig's 100th birthday.

It was a transcendent moment. But it was not the ending anybody would have wanted for the life story of Jim Williams, who died May 8. He was 50 years old.

He grew up with me on Robertann Drive in Kettering, the big brother of my inseparable friend Suzanne. He was easily the sunniest of the gang of kids, 100 or more strong, who ruled the block. Or so we told ourselves, even though our cruel-hearted parents never invited us to any of the block parties that lasted until 3 or 4 in the morning. Their words had that muffled drive-in movie quality as we peeked from our bedroom windows, but the laughter got louder and louder. You knew it was a good party when Mom would burst into "And the great big saw came nearer and nearer and nearer to Vera."

It was always a good party when the Robertann Rowdies got together.

It's hard enough to accept that some of the Rowdies are leaving us. They are eternally youthful in our memories as they dance under the porch lights of a thousand summer nights.

But to lose one of the Robertann Kids? How could that be?

That is the one question Jim Williams never asked. "Right from the beginning there was this acceptance," said Kaye Williams, his wife of 24 years. "He never complained and even told me a few times he was surprised he didn't get more upset over the diagnosis.

His attitude made it so much easier for the rest of us. We followed his lead."

Oldest son Heath, 30, a Sugarcreek firefighter, said his father had a way of making everyone around him comfortable, no matter how bad he felt. "He was the perfect gentleman," he said.

Daughter Emily, 21, a student at the University of Tennessee, said her father initially tried to protect them from knowing too much about ALS or its grim prognosis. Patients usually live only two to five years.

"This was the worst possible thing I could have seen him go through, knowing how athletic and active he was," Emily said. "And he was real stubborn, he doesn't like to ask for help. So I was amazed at the way he handled it."

His attitude soon evolved from one of secrecy to that of outspoken advocacy for ALS patients. He became a regular, sustaining presence at local support groups. He asked the questions nobody wanted to ask; he made the wisecrack that cracked everybody up. "He was always reaching out to other people," Kaye said. "If anyone in the support group passed away, he wanted to be at the funeral."

In May of last year, the Western Ohio chapter of the ALS Association participated in National ALS Advocacy Day. Patients and other advocates descend on Capitol Hill, making the rounds of their local legislators.

There was no doubt in the mind of Executive Director Marlin Seymour about the patient she wanted to represent the 160 patients in the 56-county chapter. "Jim was someone who was committed to helping other patients," Seymour said, "and I knew he could speak the story."

Seymour said it's a physical and emotional hardship for ALS patients to make the trip and to make the rounds of more than a dozen Ohio legislators. Depending on the progression of the disease, patients must bring a virtual medical supplies store of equipment: wheelchair, ventilator, roll-in shower, special mattress, suction machines. "It takes a special commitment to tell this devastating story multiple times in one day," Seymour said. "But it makes a tremendous difference. You see the disease, you see the spouse, you hear the emotion when the story is told. It's not on the telephone, not on e-mail, it's right there face to face."

Kaye said her husband was honored to represent the chapter: "He wanted to do his best, and he wanted to show what it was like to be a PALS, or person with ALS."

During the trip, Williams also met Dr. Robert Bowser, a researcher and professor with the University of Pittsburgh who also serves as director of the ALS Tissue Bank. "We talked about tissue donation program, and how it helps researchers from around the country search for the cause and eventual cure," Bowser said.

That conversation left a deep impression on Williams. A week before he died, Kaye asked him if there was anything left undone. His last wish was to donate his brain and spinal tissue to Bowser's research. "It shows his unselfishness in that he wants to use himself to find a cure for the next generation," Bowser said.

The need for a cure also made a deep impression on Williams' son Evan, a Centerville High School student who has raised more than $3,000 for the ALS Association. "He was the most undeserving of this disease," Evan said. "He did everything right by his family and friends."

Nobody asked Evan to do it. "I wanted to raise awareness and ultimately to find a cure, and that's what drove me," he explained.

The lack of awareness is the one thing that ever prompts the Williams family to speak bitterly. "It has been 64 years since Lou Gehrig got it and they don't know anything more about ALS than they did then," said Jim's father, Rick Williams of Springboro.

Bowser noted that ALS - officially known as amyotrophic lateral sclerosis - is nearly as prevalent as multiple sclerosis, with more than 5,600 Americans diagnosed every year. It's a progressive disease that occurs when motor nerve cells in the nervous system cease functioning and die.

"Unfortunately our people don't hang around as long as MS patients, so there aren't as many to fight that advocacy battle," Seymour said.

In an attempt to increase awareness, Seymour coordinated "ALS Awareness Day" with the Cincinnati Reds in honor of Lou Gehrig's 100th birthday. "It was my job to pick someone from our organization who supported our patients and exemplified what we're about," Seymour said. "The first person I thought about was Jim."

Knowing that Williams wouldn't be strong enough to throw the ball, she decided to ask Evan to stand beside him and make the actual pitch.

Williams' condition deteriorated rapidly after his 50th birthday in February. His spirits never flagged.

"Even at my age, I don't know if I'd be able to do that, to keep up that cheerfulness," his mother said. "He taught us all how to live."

"And he taught me how to die," Rick Williams said. "He was so brave and he never complained. His last day at his job at Delphi they surprised him with cake and coffee. One of his co-workers got up who said, 'I spent two years in 'Nam with the Special Forces, and I've never known a braver man.' "

After Williams died, Seymour's thoughts kept going back to his son. "Evan's got to be the one," she told herself. She asked him by speaker cell phone during one of his Centerville Baseball League games. His teammates sat in the dugout; family and friends listened behind the fence as Seymour asked, "How would you like to throw out the first pitch?"

Evan was speechless; everyone else cheered.

"I'm a little nervous," Evan confessed Monday," but it's a great honor."

He steeled himself by remembering Lou Gehrig's famous July 4, 1939, farewell before 61,808 fans at Yankee Stadium: "Today I consider myself the luckiest man on the face of the earth."

His father felt that way, he said, because of his family and friends.

An old friend from Robertann Drive, Scott Bertrand, sent a letter shortly before Williams died. "Wasn't it yesterday we were in your back yard playing 500? You had the best yard for baseball, man, it came with grapes! Believe it or not I found one of those old baseball cards the other day and found out it was worth $600. I guess I won that toss. Those are the memories that have made us who we are - four-square, free-for-all, Boy Scouts, fishing at the creek, paper routes, neighborhood floats. We became who we are way back then."

How did the Robertann Kids become middle-aged? How did one of those Boys of Summer get away from us so soon?

If only he could have been there for just one more block party, one more baseball game.

But his family and friends were there at the Great American Ball Bark on Thursday, most of them sporting the silver-gray team shirts of Evan's Centerville Baseball League team. The shirts bear the ALS emblem and the slogan, "Lou Gehrig's 100th birthday." On the sleeve is written, "In memory of James Williams."

Evan said he felt his father's presence - and an unexpected calm - as he walked out on the field Thursday. Then he mouthed the words he had rehearsed so many times:

"This one's for you, Dad."

At that moment, it was hard not to imagine That Smile.