Man's illness provides direction

This much he remembers. His name is Kevin Smiley. He and his wife, Debbie, worship at West Acres Baptist Church in Evans. He drove to services there a few Sundays ago.

That's where his memory fails.

"People would come up to him, good friends, and he wouldn't speak to them," Mrs. Smiley said. "He had trouble standing."

The spell was a familiar one for Mr. Smiley, who is 46.

"I know I went to church Sunday but can't remember it," he said. "I went to talk to the pastor and couldn't say anything. I had no emotions. I had no feelings. I am a walking zombie."

They are symptoms of an uncommon brain disease, frontotemporal dementia, with which Mr. Smiley was diagnosed two months ago. Doctors think he has had the disease for 18 months. It shrinks the part of the brain that controls behavior, emotions and language.

Most people with the disease have two to five years to live.

"There's no cure. It's progressive," Mrs. Smiley said. "The episodes will increase until they take over. He'll have trouble eating. He'll eventually be bedridden. He'll stop being able to take care of himself."

And that's OK with Mr. Smiley.

"I mean that. It is OK," he said one afternoon last week in his wife's office at the Medical College of Georgia. She works as director of parking services, but he left his job as director of Information Services at the end of July.

Mr. Smiley, a retired Army veteran who served in the Persian Gulf War, has been a Christian since his youth, but says he has found new purpose since his diagnosis. His church has launched a Bible study and sermon series called One Month to Live, and Mr. Smiley will cap off the program with his testimony in September.

He's one of several in the church to have received a life-changing diagnosis over the past year, said the Rev. Larry Harmon, the church's senior pastor.

With each, he said, "their lifestyles started changing. They looked at things totally different."

Their priorities center, first, on getting right with God and, second, on getting right with others.

"I believe Scripture teaches us that's how we're suppose to live every day," he said. "That's why we're doing this series."

Mr. Smiley is glad to participate.

"I've basically spent 46 years of my life not doing God's work. It's brought this realization upon me. It's brought me peace," he said. "Most people don't have this opportunity, and it is. It is an opportunity. God's will is for me to teach about commitment, faith and trust. So many people walk through society unwilling to pick up their cross."

Four weeks ago, Mr. Smiley lay in bed, unable to sleep.

"I prayed and God said you need to get up and write," he said. "I'm not a writer, but he said to write anyway. I started at 11 and didn't finish until 2 a.m."

The result was a statement of faith, a declaration of his intent for his final months or years, however long he has left.

"Just in the last four months, my faith in JESUS has grown to the height it should have always been," he wrote.

He started a Web site, www.smileykevin.com, and committed to sharing his faith.

"I have never led anyone to the Lord but I'm going to now," he said. "Forty-plus years of my life, in one sense, have been wasted. I could have been doing something positive instead of just working for myself."

A blackout in June convinced Mr. Smiley it was time to submit his resignation and go on long-term disability. He has chosen to stay on as a volunteer and consultant for as long as he can.

"If you asked me a year ago if this was my life, I wouldn't have believed it. I thought I was invincible. I worked probably 12 hours a day and I loved it," he said. "The question is, how can I do good now? Before, I was leading a life, getting up, going to work. God took last place. Now he's first. My family is second."

The Smileys have been married for 15 years. They have five children from previous marriages. The youngest is 16; the oldest is 26.

"He makes it easier on everyone else," Mrs. Smiley said. "We're still coming to terms with it."

When he first found out, Mr. Smiley said, "I tried to be strong for my family. I've been more honest since then. God could heal me. It could happen. But it's not up to me. I'm not scared to die now. I used to wonder what would happen. My eyes have been opened."

He prays his disease will open eyes for others, as well.

"People say 'What do you have?' and you tell them and they don't know what you're talking about," Mrs. Smiley said. "It's totally different than what people think when you say the word dementia."

The disease is often misdiagnosed.

"There are such behavioral changes that patients can be diagnosed as schizophrenic or as having a mental disorder," said Dr. Suzanne Smith, Mr. Smiley's doctor and the director of MCG's Memory Disorders Clinic.

The disease is different from Alzheimer's and other forms of dementia, which set in later in life and often have a longer life expectancy. The symptoms differ.

"You don't see memory impairment, not at first. You see language and behavior problems," she said. "It's important to remember that the behavior coming from the patient is the disease, not the person. There are a lot of cases where people get divorced or they isolate themselves. It's easy for friends to back away. The family can be embarrassed. Often they don't know what the patient is going to say or do."

It was Mr. Smiley's odd behavior that led to his diagnosis.

When his grandson was born, Mr. Smiley was, "for lack of a better word, apathetic," Mrs. Smiley said. "I kept saying why are you so cold? Why have you become so mean? He was always the peacekeeper, but now ..."

"I showed no empathy, no sympathy," he said.

"I thought he was becoming just a mean old man," Mrs. Smiley said.

Headaches started and the Smileys went to a neurologists, and several tests, including an MRI and spinal tap, pointed to dementia.

The headaches remain five months later.

"When he's having bad days, he says it's like a monkey is on his back," Mrs. Smiley said.

The Bible helps, which is weird, Mr. Smiley said, because he has never been much of a reader.

Mr. Smiley plans to spend his last days studying the Bible, and with his family, fishing and camping, and preaching about Jesus Christ.

"It's a calling on my life. I can use what illness I have to speak to other people, to show them how to have faith even though I will ultimately die from this. My death," he said, "is not a spiritual one."

Reach Kelly Jasper at (706) 823-3552 or kelly.jasper@augustachronicle.com.