Word by word, language is stolen
Chicago Tribune columnist Mary Schmich (Zbigniew Bzdak / Chicago Tribune / June 18, 2014)
Mercutio. Montague. Lady Capulet.
His wife had already noticed changes in his speech. He'd started scrambling pronouns. "I" exited his mouth as "they." Nouns vanished.
His wife knew it was odd that he had anything less than perfect control of his basic tools. An English teacher who confuses words is like a carpenter who mixes up nails and screws.
"I'm fine," he'd say when she'd bring it up. "I'm fine."
That day at the blackboard he had to admit he wasn't.
Foote was only 58 when he discovered he had a little-known form of dementia known as primary progressive aphasia. PPA, for short.
Alzheimer's, the dementia we all know, steals memory. PPA begins by destroying nerve cells in a part of the brain that controls language. In other words, it steals words.
"I can find the real world," Foote said Friday. He paused, revised. "Word. I can find words, but sometimes through circuitous routes."
He was sitting in his Wilmette living room with his wife, Cathy Donnelly. They agreed to be interviewed because a big conference on PPA is coming to Chicago this week, and though they haven't discussed his condition even with some of their friends, they believe it's important to help others understand the disease.
"It's my coming out, I guess," Foote said.
Now 66, Foote still looks like a parent's reassuring dream of an English teacher. His full gray hair is as neat as his sweater vest. His smile and gentlemanly humor are intact.
He says "toy" when he means "treat." "Prominent" when he means "permanent." Sometimes he's as articulate as you'd expect of a man who taught English for 22 years at Evanston Township High School and another 15 at Lake Forest. Other times, he's lost in a verbal maze.
"My life has been talking," he said. "And teaching. And helping kids learn to write. And telling stories. I felt there was. I knew. I felt. I guess."
You could almost hear his mind. Scanning. Searching. Shuffling. Waiting. Finally, the words: "I felt parts of me were falling off."
Reading is one part that has fallen off. If he reads now, he has to do it out loud.
And spelling. "Come on, I can do this," he told himself when letters started going haywire. But he couldn't.
"Here's my watch." He held up a wrist and on it, a watch made for the blind. He punched a button on the side. The watch announced: "The time is 11:32 a.m."
A few minutes later, his wife asked if he could read the hour. He gazed at the round dial.
"It's 10. No. It's 11." He looked up. "I don't know."
Because PPA creeps into a mind earlier than most dementias, it often goes unrecognized. Foote was lucky enough to find his way to Northwestern's Cognitive Neurology and Alzheimer's Disease Center, the sponsor of the upcoming conference, where he was diagnosed.
At Northwestern, he learned the bad news: There is no cure. Unlike stroke victims, people with PPA can't recover speech through therapy. Eventually, memory goes too.
At the same time, he learned that people with PPA often develop skills that don't demand much talk. Some garden. Or build things. He has taken up watercolors. He also hangs on to his job as a docent at the Loyola University Museum of Art.
Some days he goes to a support group at Northwestern. It's a place where people who have trouble talking feel safe talking to each other.
"I used to be able to," he said. "To. Be able. Help."
"Help other people," Cathy said.
She finishes a lot of his sentences. She pays the bills now too. The numbers were too much for him. But he cleans and cooks, and if his trouble with measurements results in some strange dishes, she doesn't mind.
"For a while there," he said, "I was, I was driving in the evening and there was a little..."
He waved his hands, smiled, let the unspoken words drift off.
To prepare for our interview, Foote scribbled two lines of a Dylan Thomas poem on a small yellow sheet of paper. He picked it up to read.
"Do not go dentle," he said. Paused. "Do not go gentle." Pause. "Into there."
The lines as he had written them were this:
Do not go gentle into that good night,
Rage, rage against the dying of the light.
"Fight it," he said. "Fight it. I'm not fighting it to be angry. I keep raging to make sure I can keep doing things."
Cathy reached out, clasped his wrist, blinked back tears.
"He's the most upbeat, enthusiastic, joyful man," she said. "But there's going to come a time."
Her words, too, drifted off.