ORMOND BEACH - After he was diagnosed with amyotrophic lateral sclerosis last November, Tom Davis says he would have just sat around waiting for the deadly illness to take its course, had it not been for one thing: his marriage to a blind woman, who taught him acceptance and patience and not to fear death.
"If I weren't married to Kathy, I probably would have retired, got my money out of the bank and gone off and died on my own somewhere," he says.
As it was, progression of the disease in his arms forced him to retire from his teaching post at Daytona Beach Community College. But Tom plans to continue his lifelong role as an educator, this time showing people how to deal with ALS.
"My role as a mentor and a teacher, that's the gist of this whole thing," he says. "Most people don't know how to approach my disability. I've seen how they've done that with Kathy. I'm going to try to do the best I can with this however long I have to live; we don't know."
ALS is characterized by degeneration of nerve cells in the brain and spinal cord which leads to progressive paralysis of the muscles. If, as the Ormond Beach couple are used to saying, there is no miracle, Tom has from three to five years to live, according to the doctors.
"They say it's slowly progressing, but I see it progressing," he says.
The 70-year-old Tom had been an athlete all his life. "But not like Lou Gehrig," he is quick to add, referring to the baseball player after whom the disease is named. Up until last year, Tom had kept an active schedule of tennis, basketball and long walks. Now his arms are visibly thin and frail. After talking for an hour, saliva collects around his mouth, a sign of weakness in his facial muscles.
"There are a lot of things we miss, that we can't do anymore," he says -- such as taking long walks through the tree-lined roads of North Forty, the development where they live. Now Tom can only walk short distances before getting winded.
Tom first noticed something was wrong five years ago on the tennis court. He felt a strange weakness in his left hand when tossing balls up to serve. As the weakness progressed and the fleshy tissue in his hand continued to thin, the doctors were uncertain about what to do. It took four years, two operations and a multitude of tests to finally determine that Tom indeed had ALS. By then, the disease had shown up in his other hand.
"We were stunned," says Kathy. "You wake up one day and everything seems to be fine and then you get this news and there's nothing to be done -- we were just numb. You know, I don't know how we got this double whammy."
Tom says initially he wanted to deal with the disease by himself, "like a man." So when he first heard of a new support group for ALS, he was reluctant to join it.
"I didn't want to go to any of the support group meetings, because you see what's coming down the road. You see other people who are more advanced in the disease than you are and you know that will probably be you in a few months, or a half a year or a year -- whatever it is."
But while Tom did not want to go, his wife Kathy said she was going to the meetings without him, because she felt she needed to know everything about ALS. "He was devastated about it, looking at what he knew would lie ahead and he didn't want to read about it -- he just couldn't cope with it and I had to read about it to cope with it."
Kathy then went into hyperdrive. Using keystrokes and special audio software on her computer, Kathy trolled for every bit of ALS information on the Internet.
When it is time to talk about symptoms and medicines, it is Kathy who explains: Tom takes quinine for his twitching -- "vesticulations," Kathy calls it. "Those are muscles trying to fire," she adds. "The bad news is when they quit firing, they don't work anymore."
As vice-president of the National Federation for the Blind of Florida for five years, Kathy knows the business of advocacy and education for the disabled.
"I've gone through losing my sight and I know. I have worked with zillions of disabled people. I know that it is so unhealthy to stuff your anger and your fear inside yourself and not to discuss it with anybody. It's just going to get faster and be worse and you're going to die a bitter man."
The first month after the diagnosis, the disease almost wrecked their marriage, Kathy says.
"It was really frightening to me because we had always been so close and I could just feel us erecting our individual walls. I was protecting myself so I could learn, and he didn't want to go there."
Tom says he had read the book, "Tuesdays with Morrie" by Mitch Albom, and, for him, the knowledge he'd end up like the character with ALS in the book was too much to bear at first.
"There were a lot of things on my mind. I was going to die, I was going to end up like Morrie and this is going to come down two years down the pike, which is like next year. Here it is December, then it'll be next December. But now I'm not afraid anymore. Interesting. I'm not afraid to face it."
Tom says he realized there was a purpose in his getting ALS -- to become an advocate and a teacher on the disease, the same way Kathy has been an advocate for the blind.
"If Kathy has the courage to face life every day, I certainly can use that as the inspiration," he says, during an interview at his wife's office in the DBCC administration building, where she works as a counselor. "I thought I came into Kathy's life to help her. Now the truth comes out, she actually came into my life to help me."
Tom shares the fact that he has Lou Gehrig's disease with friends, former students, whomever he happens to meet. In support group meetings, he goes around the room and hugs each person and tells them they are not alone.
As Tom loses his ability to grip things, Kathy helps him with daily tasks such as buttoning buttons. Tom still has power and control in his right arm and is able to drive.
"I have great hands; he's got good eyes. We have to be very creative. I guess you would call it adapting," Kathy says.
But the couple worries what they will do when the day comes when he no longer can drive. The Davises, who have spent their lives volunteering for various causes, says they may have to put pride aside and let others help them, even though it would be turning the tables.
"We started a list of people who offered their help," says Kathy. "And we stopped at number 45 and just decided to hold a gathering, invite everyone and tell them what we need."
Tom, who has a Ph.D. in mathematics, was a popular professor at DBCC. During a short walk through the administration building lobby, he is given three hugs by passers-by and encouragement all around.
"This is where my personal history needs to be shared with everyone," he says. "We are all going to die eventually, and I've accepted this as another phase of my life, like becoming a teacher."
Even with support from others, Tom eventually will have to make the decisions only he can make: Whether he wants to go on a ventilator as soon as the muscles that support his respiratory system fail, whether he wants a feeding tube to keep him alive.
"We are really going to be tested in the months ahead," says Kathy.
But Tom also worries about what will happen to his wife once he is gone. He is hoping that a new gene therapy might just hold the key to Kathy getting her sight back.
Kathy has a rare type of blindness caused by Leber's congenital amaurosis, which attacks vision at an early age. But a group of researchers at the University of Pennsylvania successfully used gene therapy to treat three dogs with the condition. The couple traveled to Philadelphia over the summer to see if Kathy could be a candidate for human clinical trials. She was told by the researchers she would make a superb candidate, but then the university was sued by a family of a person who died in a clincal trial, so the gene therapy was put on hold.
"I would love to see Kathy's eyesight returned before I pass away," Tom says.
"He's just worried sick about what'll happen to me is the bottom line," she says, adding that she's not holding her breath for the therapy. "With my being blind and his not being here, I worry, too. You know, I will find a way. We just have the hardest time thinking about one living without the other. That's the hardest thing."
As long as he is physically able, Tom will continue to help people in the group and inform people about his disease.
"Even if I don't receive a miracle -- and why should I, there are a lot of people in the support group worse off than me -- I have received one anyway. I am going through this with a purpose and I know something good will come of it."
Kathy, who has been an advocate for the blind for 22 years, says she is constantly coming up against people's misconceptions about disabled people. But the biggest lesson she says she can teach is about human fragility.
"You just cannot believe the fact that your whole life, you're going to be in public relations," she says, "teaching people about the fact that tomorrow you could be the one with the ALS or the blindness or the quadriplegia or the deafness." 
