Columnist strikes chord with wry stories of life with Lou Gehrig's disease
By THOMAS BECNEL



thomas.becnel@heraldtribune.com

Rich Brooks wants to make a joke, welcoming a newspaper colleague to his home, so he uses special computer software to type out a teasing message.

It's easier said than done.

From the reclining seat of a high-tech wheelchair, Brooks peers at the screen of his laptop. A grid of letters looks like this:

a i c b e g

t s d f m k j

w l h n p q x

o y r u v z

Brooks, 54, twitches his cheek -- one of the few movements he can control -- to move a cursor from row to row and letter to letter. Each time he selects a letter, the program beeps. After a few minutes and dozens of twitches and beeps, counting typos, he produces a sentence:

"Tom drew the short straw and has to write about me."

Funny.

I explain to Brooks' health-care aide that I'm here to do a feature story. Reporters don't usually write about other reporters, but Rich is special.

Brooks catches this -- his hearing is fine -- and he can't let it pass. He twitch-types a reply:

"Special? That's a euphemism, isn't it?"

Funny.

Brooks is special because Herald-Tribune readers care about him and his life. Brooks is special because his Saturday columns describe coping with Lou Gehrig's disease, which textbooks define as "chronic, regressive and almost invariably fatal." Brooks is special because he faces a terrifying illness with a brave sense of humor.

This is how he writes, one character at a time.

This is how he lives, breathing air from a portable ventilator through a hole in his throat.

This is how he survives, with his body trapped in a chair but his mind roaming the Internet.

Brooks can barely speak, moaning "yes," "no" and a few other words, but the one thing he can do is laugh -- especially after he makes you laugh. His blue eyes gleam and his mouth twists open, while his chest heaves, or tries to heave.

Funny?

It's the funniest damn thing you've ever seen.

Buckeye football family

Saturday afternoons mean one thing at the Brooks house: college football, and lots of it.

Rich and his wife, Kathy, are both from Columbus, Ohio. Both graduated from Ohio State University. Both are big fans of the Buckeyes, currently ranked No. 1 in the nation.

Kathy, a case manager at Sarasota Memorial Hospital, is low-key, as she is about most things. She wears jeans and a gray polo shirt.

Rich, though, sports an authentic Ohio State jersey, No. 7, while bundled in a scarlet-and-gray Buckeye comforter. He sips Mountain Dew through a straw from an Ohio State glass.

The fireplace mantle of the den is crowded with framed and autographed photos of Buckeye players and coaches. A souvenir banner celebrates the 14-0 season that produced a 2002 national championship.

On TV, Ohio State is winning big, as usual.

Rich doesn't offer color commentary -- he turns off his computer to relax and enjoy the game -- but he and Kathy follow every play.

Their younger son, Nathaniel, 15, is typing online in another part of the house. No Buckeye fever for him.

Their older son, Noah, 20, bounces between the Buckeyes and another game on another television in another room. He's living at home again, after two years at the University of Florida, but he shows pride in the Gators with a blue-and-orange "Swamp Thing" T-shirt.

"I don't know what I'm going to do," Noah jokes, "when they play Ohio State for the national championship."

'Not a happy illness'

During timeouts and commercials, I ask Kathy about family life.

In 1995, Rich was diagnosed with ALS, amyotrophic lateral sclerosis, popularly known as Lou Gehrig's disease. It's a neurological disorder which gradually causes muscles to weaken and atrophy throughout the body, even though patients often retain their memory, intelligence and personality.

This is the special hell for people living with ALS. They're all too aware of being trapped in their dwindling bodies.

"I'm not going to lie to you," Kathy says. "This is not a happy illness. There are days when it gets tough. But what are you going to do?"

Noah chimes in: "It's the hand we've been dealt. We've got to play it."

Kathy spent a decade working for a hospice agency, so she knows something about hard times and hard choices. Now she's at Sarasota Memorial Hospital, where she works with families who have greater problems and fewer resources.

So I ask Kathy what, as a professional case manager, she would make of the Brooks family.

"You mean us?" she says, laughing at the very idea. "Oh, we're too crazy."

Noah laughs, too: "I think we're a textbook definition of dysfunction."

"Now, now," Kathy says, shaking her head.

Both look more amused than troubled.

After 11 years of thinking, worrying and crying over ALS, they can joke about their situation.

On weekends, Kathy and her sons take turns looking after Rich. They feed him, clean him, take him to the bathroom. They lift him into his chair in the morning and put him to bed at night.

Sometimes it's hard to figure out what Rich wants. Sometimes it isn't.

When the ballgame ends -- Buckeyes win, 35-7 -- Noah fixes a cocktail for his father. They're out of cherries, but bourbon, vermouth and bitters make a passable Manhattan.

Noah holds the glass while Rich takes a drink to celebrate.

Newsroom camaraderie

Brooks, a former city editor in Venice, always loved the give-and-take of newsroom banter.

If your kid went to Pine View School for the Gifted, he'd razz you about the fancy magnet school. If Ohio State lost a game, he expected to hear about it Monday morning. If copy was late, he'd yell across the newsroom.

Like the dad on "That '70s Show," he was always mock-threatening to put his foot up somebody's rear end.

"He had a unique way of dealing with reporters," says Jon DeVries, a Herald-Tribune editor. "He was very ... gruff, but it was kind of this tough-love thing. He'd knock you down and lift you back up."

Brooks' demeanor didn't change when he began using crutches and then a wheelchair.

Venice reporters watched his physical condition deteriorate over the years. There's still a dent in the wall of the men's bathroom, where he hit his head during a fall.

Those were trying times, often frightening times, but it also brought the journalists closer to Brooks.

Jay Roland used to tie his tie. Phyllis Breeden used to comb his hair before meetings.

They'd have lunch, with her feeding him his food.

When Brooks was no longer able to type, reporters would hear him struggling in his office with voice-recognition software:

" ... 'he said,' period. ... 'he said,' period. ... 'HE SAID,' PERIOD. ... Goddamn it! No, goddamn it! Strike that!"

No matter how bad things got for Brooks, he was always joking and trying to make other people feel at ease. Now he works at home but tries to stay in touch.

"He still forwards me naughty e-mails that I probably shouldn't be getting on my workplace computer," DeVries says. "He was always a wiseass."

Rich and Jerry

Brooks writes in the living room, facing a wall covered with family photos, bulletin-board reminders and still more Buckeye memorabilia.

Behind him is a large print of a black-and-white photograph by Steven Katzman, a Sarasota artist. The lighting is dramatic. The composition is of Brooks' face, angular and pale, framed by a pair of black hands.

Those hands belong to Jerry Denson, his health-care aide.

Denson, a 39-year-old Georgia native, is a former Army diesel mechanic who made a career change. For the past three years, Monday through Friday or Saturday, he's spent 12 hours a day with Brooks.

"You tend to get closer than you would with a patient in a nursing home or hospital," Denson says. "You get to know them better. You become friends."

Denson helps Brooks with everything from his tracheotomy tube to his Internet connection. When Brooks could still speak, Denson would take dictation and type his column. Now it's all on the computer.

The men run errands together in a custom white van. Usually it's trips to Publix or the video store.

"We're in and out of the house quite a bit," Denson says. "A lot of times we'll take the dogs out for a walk in the afternoon. In the evenings, we tend to watch movies."

They both like action movies. They both like detective movies. They both like military movies.

Buddy movies.

Reason for hope

The national Web site for the ALS Association carries a trademarked slogan: "A Reason for Hope." Part of that hope comes from long-surviving patients such as Brooks.

A great majority of ALS patients die within five years of being diagnosed. Brooks has lived more than decade. Many elderly patients choose not to "trache-and-vent" as he has, using a portable ventilator to prolong their lives.

At the Florida chapter of the ALS Association, he's more famous for longevity than journalism.

"He's known for living with ALS," says Dara Alexander, chapter president in Tampa. "A small percentage of the population have the mentality that the disease is not going to beat them. Rich is one of those people. Rich is a fighter."

Writing, editing

After college in Ohio, Brooks moved to Southern California and did public relations for United Cerebral Palsy. Never imagining his own future, he got to see how patients and families lived with severe disabilities.

Brooks went on to work for small newspapers in Burbank and Glendale. He also freelanced for a magazine called The Gambling Times, where the arts writer was a guy named Regis Philbin.

Diane McFarlin, now publisher of the Herald-Tribune, hired Brooks when she was managing editor. Years later, when he was diagnosed with ALS, he had to call her with the bad news.

McFarlin told him he had a job at the paper for as long as he wanted one.

Brooks is still a full-time employee. He writes a column each week. Sometimes it takes all week.

Last year Brooks was a finalist for a column-writing award from the American Society of Newspaper Editors.

Sarasota readers appreciate his straightforward storytelling. He isn't overly sentimental. He's no martyr.

"He's feisty and he's matter-of-fact," McFarlin says. "He writes about courage like it's no big deal. He never, ever hints that we should feel sorry for him."

And he's often funny.

In one column Brooks described himself as "Floppy Dad," having to be lifted and carried everywhere. "It's humor that makes us human," he wrote. "More than anything, I fear losing the ability to laugh at myself."

Shirley Hagelberg-Klemish, a Herald-Tribune reader, lost her husband to Alzheimer's disease, which might be why she appreciates candid descriptions of life-and-death issues.

"Cherish Mr. Brooks' columns," she wrote in a 2005 letter to the editor. "He offers glimpses of what life is truly about."

Deb Winsor, assistant managing editor, edits Brooks' column. She misses the days when he could bark at her about changes and rewrites.

Anniversary rings

Kathy Brooks likes to say she and Rich are meat-and-potatoes people. Wait, she says. More like fish sticks and macaroni and cheese.

They visit his brother in Fort Lauderdale each year for Thanksgiving. They're usually home for Christmas and their wedding anniversary.

"Nothing special," Kathy says, laughing. "We're not particularly romantic people."

But then she thinks of a few things.

After Rich learned he had Lou Gehrig's disease, they celebrated their anniversary with dinner at Turtles on Siesta Key. He gave her a ring he'd had made for the occasion.

Three years ago, for their 25th wedding anniversary, Kathy got them matching birthstone rings.

The Brooks family isn't hoping for a magical cure that will reverse his condition.

Choosing to live with a ventilator meant not giving up. It isn't borrowed time so much as an investment in the future.

"I think of this as chosen time," Kathy says. "Rich said he wanted to live long enough to see his kids graduate from college."

Birdies and laughter

Scott Peterson, sports editor of the Herald-Tribune, used to live near Brooks in Sarasota. They played golf together, even though Brooks was a much better player. Their sons were scouts in the YMCA Indian Guides program.

These experiences gave him plenty of material for dinners and roasts in honor of Brooks.

Peterson claims credit for helping diagnose ALS with a low score on the golf course.

"If you're beating me in golf," Brooks said, "I've got to go to the doctor."

Earlier this year, Peterson visited Nokomis with another sports reporter. Brooks isn't so quick with a comeback these days, having to type out his replies, but otherwise it felt like old times.

"Even with just three grunts, he makes me laugh," Peterson says. "He gets that look in his eyes, like he's pulling something over on you, and it's funny as hell. We go over there and we're laughing our asses off."

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