Mann: ‘I really believe they’re going to cure me’
Sitting in the faculty lounge of the Darla Moore School of Business, he’s wearing a short-sleeved, white, button-down shirt. No necktie, though.
Steven Mann rarely wears a tie, because it takes him nearly half an hour to try to tie one. His hands just don’t do what his brain tells them to.
He has Parkinson’s disease.
A professor of finance at USC for the past 25 years, Mann doesn’t think of himself as being sick; he thinks of Parkinson’s as a nuisance in his life.
“It’s a challenge. Each day is different,” he said. “I tell people that Parkinson’s has a mind of its own. It’s totally random. You can be having a good day, and suddenly it turns out to be not so good, or the other way around.”
The day he was diagnosed in May 2002 was “one of the best days of my life,” he said.
He was worried he had ALS — “a death sentence,” he said.
When his doctor told him that he had Parkinson’s, Mann says he was so happy that “if I didn’t think he would’ve slugged me, I would’ve kissed him.”
“If I had Parkinson’s, I didn’t have ALS, and I had a fighting chance,” Mann said he remembered thinking. “It was the best news I think I’ve ever had.”
Parkinson’s is a degenerative disease of the central nervous system that causes a body’s dopamine-generating cells to die. Its symptoms vary widely, from jerky movements and tremors to halting speech and insomnia. Essentially, Mann said, Parkinson’s causes his body to function “like a car without motor oil.”
His mind, though, “still works at Mach 5, like it always has,” he said.
Mann is an accomplished professor with more than 20 teaching awards to his name. Before Parkinson’s took control of his speech and movement, he taught his classes as if they were “the greatest show on earth,” he said.
“I was like an evangelical minister cranked up on speed. … Words just tumbled out,” he said. “I can’t do that anymore. It’s different now.”
When Mann teaches now, his students lean in attentively to hear his soft voice. He repays them, he says, “by telling them things worth listening to and worth knowing.”
“The thing that Parkinson’s affords me is it forces me to think before I speak,” Mann said.
Given the luxury of time to search his “internal thesaurus” for just the right words, he said, “I can say more in fewer words than about anybody I know.”
He speaks slowly and deliberately, his face sometimes contorting as the words struggle to free themselves.
But the words that emerge are eloquent, almost as if he’s reading from a novel, like the one he plans to write after he retires. It already has a title, “Dial 9 to Get Out.” And he can sketch a portrait of the main character, a retired finance professor with a neurological condition who solves crimes.
He also wants to write a book about Parkinson’s after his teaching career ends, though he hopes that won’t happen for a long time.
Writing makes Mann feel like he has a measure of control over a situation that’s uncontrollable. He writes poetry, too. A poem titled “I Walk the Night” was born out of the insomnia he sometimes faces as a symptom of his disease.
But Mann isn’t the only person who has to deal with the effects of his disease. He remembers to be sensitive to the ways it affects his wife of nearly 30 years, Mary, and their two daughters, Meredith and Morgan. His eyes tear up slightly as he talks softly about his daughters and the effect Parkinson’s has had on them.
Morgan, a senior at Cardinal Newman High School, was in kindergarten when her father received his diagnosis. It took her a while to grasp the meaning of his disease. In a recent scholarship essay, she wrote about how she began to come to that understanding as a 10-year-old:
“It was like glass shattering over my head,” Morgan wrote. “My childhood suddenly wasn’t like all of my friends’. Their dads didn’t have a stutter or have hand tremors. My friends didn’t wake up early each morning to help their dad fasten buttons on his dress shirts. They didn’t have a bowl of pistachios on their kitchen counter for motor skill practice. The word ‘What?’ hadn’t been banned from their vocabularies to prevent frustrations. My dad wasn’t like everyone else’s, and it took me four years to realize it.”
Mann says one of the toughest challenges of living with Parkinson’s is knowing what his future likely holds.
“Relative to most people, I know too much about what my future’s going to be like,” he said. “With every word I speak, I’m reminded of my mortality. You’ve got to make peace with the disease, because if you concentrate on that, it’ll eat you up inside.”
Parkinson’s, he said, has given him a sense of urgency to do the things he wants to do, like travel.
“Parkinson’s encourages you to move,” Mann said. “And when Parkinson’s finally has its way with me, I won’t be able to move. So I want to spend every minute I can [doing things].”
But Mann believes his best days are still ahead of him. He tells people he’s a “crazy optimist.” In the next 10 years, he feels confident that there will be a cure for Parkinson’s.
And he already knows what he’s going to do the day after he’s cured.
“I’ll probably get up late because I’ll be hungover (from celebrating). I’m going to go and buy a motorcycle — big Harley, a cruiser — and learn how to ride it,” Mann said. “I really believe they’re going to cure me. One of those nerdy neurologist guys is going to think of something to fix me. So I’ve just got to stay in good enough shape to enjoy it when that day comes.”