ORMOND BEACH -- Tom Davis is working the room like a presidential candidate.

With his frail arms extended, he locks onto his next target. Another familiar face, another inescapable bear hug.

"Oh wow, thanks so much for coming," he beams, bracing himself on the shoulders of an old colleague from Daytona Beach Community College, where Davis taught math until last year.

More than 130 friends have gathered for his 71st birthday party, a tribute dinner at the Aberdeen community clubhouse. It will be a night for music, laughter and reminiscing -- a night for embracing life.


"It's a wonderful birthday, the best," he tells his wife, Kathy, who is blind. "I'll remember it forever."
Davis' words are anything but hyperbolic. He knows that after nearly 11 years of marriage the couple's good times are nearing an end, and that the harshest test of their vows lies ahead.

An avid tennis player and life-long athlete, Tom was diagnosed a year ago with amyotrophic lateral sclerosis, a cruel and terminal disease that can quickly turn an able-bodied adult into a bedridden invalid.

Outwardly, Tom hasn't let the disease sap his spirit, even as it saps his strength. His disarming smile and heartfelt hugs remain his calling cards. As are his courage and compassion.

"Isn't it a shame that people bring flowers to funerals?" he tells his guests. "Flowers should be for the living."

Tom is determined to live with the illness, known both as ALS and Lou Gehrig's disease, rather than wallow in his ultimate fate. So is his wife, a counselor at the college, who herself has survived a brain tumor. After some soul searching, Tom followed Kathy's lead as an advocate for the blind and decided to do the same with ALS.

He'll remain the educator until the end.

"She is my role model, my strength. I don't know how she does it," Tom says, shaking his head. "I am astounded by how she lives her life."

But his struggle with ALS is very different. The facts are clear and grim.

There is no known cause or cure for the 30,000 Americans battling the disease, which shuts down the body, while the mind remains sharp and fully functional. And while each case is different, death often occurs within a year or two after diagnosis. Only 10 out of every 100 people survive a decade.

"But I have Kathy Davis," he says, flashing his signature smile. "If the others had Kathy, they'd still be around."

His disease is progressing, however, faster than expected.

His speech has started to slur and he is having more trouble swallowing. His limbs are weak and stiff, as muscle mass disappears. And he becomes winded even after walking short distances with the support of a special pushcart.

Adapting to the ever-growing physical challenges is frustrating and often depressing. Tomorrow is never like today.

"I've been getting worse the last months," Tom confides while alone. "My hands are going and my legs are going. I can only stand for three or four minutes. Kathy can't see this. But she knows it."

Tom can find humor in his condition, however. He jokes about the perks, especially the nurses who show up regularly to clean, cook and even give him baths.

"Since I haven't played tennis in 12 months, I started eating a lot of ice cream and peanut butter. I thought, what the heck," he says with a grin, patting his soft belly. "But I've had to lose weight out of sheer embarrassment."

Giving up driving proved more difficult. So did giving up tennis, his second love, a sport he played daily.

"I want to go out and take a couple of last swings," he says, passing a tennis complex on the drive back from an ALS medical research conference in Orlando.

A friend, a middle-aged former student, usually provides the transportation for doctor's appointments (as far away as Miami), shopping and church.

The loss of that freedom is what upsets Tom, a man of strong faith, more than anything. He no longer can be his wife's eyes.

"What frightens me is not death, but the living until I get there," he says. "I thought I'd be the one who did things for her. But the next few years are not going to be easy for her or me. I don't want Kathy to be alone. She's going to have to find someone to help."

But right now, he works hard at masking those feelings. Whether he's with friends at a birthday party, entertaining neighbors at home or attending a monthly meeting of his local ALS support group, Tom demands that pity be checked at the door.

His arms and heart are always open to others.

"It's about time you showed up," he jokingly hollers at a fellow ALS patient as she shows up for a support group meeting in Ormond Beach.

Quickly, the mood and conversation shift. The conference room grows solemn, as 15 family members, friends and patients discuss everything from medications to mortality. No subject is avoided. The pain, fear and grief, as well as the small triumphs are all shared.

"We're a family here. Sometimes we shed tears and sometimes we share joy," says Betty Jo Babic, who helped start the support group two years ago after losing a friend to the disease. "I hate to think someone's at home with ALS who doesn't know we are here."

Before leaving, Tom hands an envelope to Babic that's filled with more than $1,100 in cash. One of his three sons raised the money for ALS research running a marathon. That research probably won't lead to a cure in time for Tom.

And that's what's so troubling to Kathy, a vivacious and dynamic woman who must now depend even more on her seeing-eye dog, Rosie.

"When we got the diagnosis, I had no idea how we were going to handle this, with me blind and Tom with this," she recalls. "For us, it's the deep faith we have that gets us through."

That faith was tested on Nov. 20, 2001, when a Gainesville specialist matter-of-factly delivered the news the couple feared. The disease Tom suspected since 1996, when his body began to weaken, was confirmed. That night the couple cried together for an hour.

"We were in a stunned state. Tom didn't want to tell anyone, even the kids (three each from previous marriages)," Kathy recalls. "I remember thinking, 'Oh no, how can we handle this on our own? How was I going to be able to push Tom's wheelchair with Rosie?' We knew we had a big whammy ahead of us."

The stress of the first month nearly ruined their marriage, as Tom wallowed in depression. He refused to attend the support group meetings. So Kathy went. She wanted to learn everything she could about ALS. She also searched the Internet, using special audio software on her computer.

As always, Tom admired Kathy's spunk, how she relished life and confronted every challenge, including his terminal illness. They were qualities he fell in love with all those years before. And he fell in love with them again.

Tom opened up. He decided not to face his death alone, welcoming the love and support of friends and, more importantly, his wife.

"The worst thing that could happen to Tom is to be isolated," Kathy says.

People often drop by the couple's townhouse for a quick visit, offering rides, conversation and home-cooked meals.

One friend, Bada Dehili, has even developed a voice-producing software program with his business partners for a laptop computer that will allow Tom to audibly communicate with Kathy when he no longer can speak.

"Maybe this will help in a miniscule way, so their life is enjoyable," says Dehili, a DBCC math professor who has known Tom for 15 years.

Tom and Kathy Davis no longer take walks in the woods or romantic vacations abroad. The life they knew is gone. But the commitment they made is eternal.

"The other night Kathy said, 'Tom, let's not die,'" he recalls. "We're praying for a miracle. But we've just had a ball living."

ray.weiss@news-jrnl.com