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Words never fail him
An ailing Sarasota writer can no longer move or even breathe. But life is precious, and Rich Brooks hasn't a minute to waste.
By SUSAN ASCHOFF
Published November 17, 2006



Rich Brooks' two dogs are not allowed on the sofa. But Lily stakes a cushion, her wagging tail proclaiming she is the boss of this living room turned office and care ward.

Brooks cannot order the dogs off the furniture. His muscles are too weak for speech. They are too wasted to even take a breath. A ventilator on the back of his wheelchair presses air in and out of his lungs 12 times a minute.

He has amyotrophic lateral sclerosis, or Lou Gehrig's disease. Most sufferers do not live more than five years after symptoms appear. Brooks was diagnosed more than a decade ago.

Brooks writes a column for the Sarasota Herald-Tribune. It now takes the lifelong journalist a week to research and write 600 words. The disease spares his ability to think: He can compose a column even as the mechanics of writing it become increasingly torturous.

He was 17 years old when he wrote his first newspaper story. He is 54, and he still has something to say. Now the words are keeping him alive.



. When I could no longer walk, I placed higher value on remaining mobile, but in a wheelchair. When I could no longer type and edit reporters' stories, I turned to voice recognition software and focused on writing. When I required too much care to work in the newsroom, my supervisors helped me set up a home office. Unable to breathe, I am grateful for the technology that keeps me alive.

- Nov. 22, 2003, column in the Sarasota Herald-Tribune



Brooks first noticed something was wrong with his golf game. He had a handicap of 15. Now he was slicing the ball.

Scott Peterson, the paper's sports editor, was Brooks' golfing buddy. He was accustomed to losing.

"He was a very good golfer," says Peterson of his friend of 15 years. Then "I beat him."

A few weeks later, the men volunteered for an Indian Guides campout. "We were standing around talking, and he fell down," says Peterson. "He just kind of blew it off."

For weeks, the doctors could not tell Brooks what was wrong with him. At one point they said he had carpal tunnel syndrome. "I think the thing that's so difficult about ALS is it's a diagnosis of exclusion," Brooks' wife, Kathy, says. First you have to decide what it isn't.

She would learn her husband, the fellow Ohio State alum and worshipper of all things Buckeye, father of their two sons, the man she fell in love with because he could make her laugh, was dying.



. Some might say that being in a wheelchair limits mobility. But you always know where to find me.

- Herald-Tribune column, Sept. 30, 2006



There is no sound of fingers striking keyboard as Brooks begins to write his Saturday column. He is typing with his face, moving his jaw and his chin to manipulate a laser light positioned on a pole beside his left cheek. His grimaces adeptly move the cursor on the screen. It still takes forever.

S-o-m-e-t-i-m-e-s

y-o-u

h-a-v-e

a-n

i-d-e-a.

Backspace, letter by letter, to erase idea and an.

a

b-e-t-t-e-r

i-d-e-a.

He is writing about politics and religion, a minefield he revisits often in his support of stem cell research. The research is not an affront to God, he says, but a path to cures for devastating diseases. Like his.

ALS took the function of the former jogger's legs and put him in a wheelchair. It robbed him of the ability to use his arms and hands to wrestle his boys. It ravages the nerves that tell the voluntary muscles what to do, and the muscles wither.

Brooks can only grunt. But he converses through software on his laptop, typing his words with his jaw, and hitting a command for the computer to speak them.

I didn't write the colum backspace to erase colum column until after I was diagnosed, he types in response to a question. The punctuation and spelling are perfect, a reflection of his profession and personality. He is working at home, semi-reclined in a wheelchair, and he is wearing a dress sweater, cuffed and creased slacks and black lace-up shoes. He says when he went to the office, he always wore a tie.

Teased about being so formal, he counters: I used to wear Hawiian (backspace to erase) Hawaiian shirts when i (backspace) I could no longer tie ties.

Brooks chooses his own topics and e-mails his columns to an editor. He writes about restoring a historic train depot, cautions that dolphins bite, advocates for a school funding referendum and asks why it smells so bad near the Venice Avenue bridge.

"When he was diagnosed, he decided he could write about life around Venice" when he could no longer be bureau chief, says Kathy. "For a long time, he wouldn't write about his illness."

Before he needed a wheelchair, Brooks attended a moonlight walk sponsored by a park, eager for the tour of nighttime sky and shadowed Earth. "He fell. He couldn't make it," Kathy says. He was crushed.

"Maybe you shouldn't hide your disability. Maybe you should write about it in your columns," she told him.

"It colors everything."



. If I could, I would shed these splints on my legs and run again. The boys and I would go to the beach . . . I would hoist 6-year-old Nathaniel up on my shoulders while Noah, wearing a dive mask, would grab my legs under water. Then we would fall backward into the warm Gulf, spitting salt water and sand when we came up.

- Herald-Tribune column, Sept. 6, 1997



Health aide Jerry Denson spends weekdays with Brooks in a well-practiced routine of medical treatments, work on the column and van runs to the grocery store and to pick up Nathaniel, 15, from high school. (Son Noah is 20.) Denson does not shoo the dogs from the sofa, either.

The Brookses asked Denson, who was rotating shifts with other aides, to work for them full-time. He could lift Rich when some of the aides could not. "He is funny and sweet," says Kathy. "We knew he was special."

Denson, an Army veteran, would call Brooks "major." Brooks called him "gunny." Trained in the military as a diesel mechanic, Denson served eight months in the Persian Gulf War. He drove 18-wheelers in Georgia before he and his wife decided to put down roots in Florida. He has been part of the Brooks family for three years.

Until Brooks' speech became incomprehensible about a year ago, Denson typed his dictation for the columns. Even now, Denson can interpret grunts before Brooks activates his computer voice, fetching a computer disc, taking Brooks to the bathroom, giving him water through a straw with a towel to catch the dribbles.

Today, Brooks is frustrated. The computer is acting up and he has to reboot. There are some shortcuts: One function key is "yes," another "no." Frequently used phrases appear in a list after he types a letter or two. When he hits the "c" key, up pops "communicate" and "community." Under "b" there is "Bite my butt."

"Working for Rich has always been a learning experience for me," says Denson, 39, "because he's not a dumba--." He says this as he stands beside Brooks. "It's mutual support." The Brookses have encouraged Denson's return to college. He is taking online courses toward a degree in health care administration.

As Brooks writes, Denson connects another hose to send medicine to Brooks' lungs, a treatment administered every four hours. A hissing sound joins the rhythmic wooshing of the ventilator. Denson adjusts the sensor at Brooks' cheek - Brooks' grunt has apparently indicated the setting was too sensitive, ricocheting the cursor across the screen.

Brooks is writing about Katherine Harris. When the column publishes, it will say he holds no grudge against her but he has problems with her comment that failure to elect Christians legislates sin.

He has been working about two hours. He has finished one paragraph.



. Hey Mr. President . . . Earlier this week, you vetoed a bill that would have loosened restrictions placed on embryonic stem cell research. I've always believed science would find a cure. I have a 15-year-old son who can't remember seeing his father walk and a 20-year-old son who lifts me into bed. I'm unable to comfort my wife of 27 years and can't tell her that she means the world to me. This is about hope . . .

- Herald-Tribune column, July 22, 2006



There is no cure for ALS. Medications reduce muscle cramping, spasticity, pain and depression.

"He pretty much has only eyeballs left to communicate," says Peterson, the golfing buddy. "He still hangs in there. He's still got a great sense of humor."

Deb Winsor, Brooks' editor, was bureau chief in Charlotte when he was chief in Venice. She remembers his "outrageousness." "Even as a bureau editor, he wasn't one to dance around. He was always the most candid person in the room."

On the rare weeks when Brooks' column does not appear, the paper publishes a note to forestall a flood of calls from worried readers.

Within the intimacy of family, anger sometimes overtakes them, Kathy Brooks says. "We try to be open about it. We've given the boys opportunities to talk about it."

Their days are different now. "We live," she says, "a very simple life."

Brooks does what he has always done. He finds the words:



. This issue, what is your life worth, holds special meaning for me. It's been two years since I drew a breath. In the two years . . . I have watched my sons grow into young men. We have celebrated birthdays, graduations and anniversaries. You can't put a price on that.

- Herald-Tribune column, Aug. 12, 2006

Susan Aschoff can be reached at (727) 892-2293 or aschoff@sptimes.com



Fast facts

Amyotrophic lateral sclerosis, or ALS

- Often called Lou Gehrig's disease, after the New York Yankees hall-of-famer who was diagnosed in 1939.

- Rapidly progressive and invariably fatal. It attacks the nerve cells that control voluntary muscles, and the unused muscles waste away.

- Causes loss of ability to move arms, legs and body. When muscles in the diaphragm and chest wall fail, sufferers cannot breathe without a ventilator.

- Typically does not affect sight, smell, taste or hearing, sensation of pain, or the ability to think and remember.

- Is diagnosed in about 5,000 Americans each year, the large majority ages 40 to 70.

- Usually results in death from respiratory failure within 3 to 5 years from onset of symptoms. About 10 percent of sufferers survive for 10 years or more.

- Remains a mystery, both for cause and cure.



Folks with ALS

Some high-profile people diagnosed with the disease include:

Astrophysicist Stephen Hawking, former world heavyweight champion Ezzard Charles, baseball player Jim "Catfish" Hunter, NFL's Glenn Montgomery, Sen. Jacob Javits of New York, actor David Niven, composer Dimitri Shostakovitch, jazz bass player Charles Mingus and Sesame Street creator Jon Stone.

[Last modified November 16, 2006, 18:23:26]
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