Tuesday, June 8, 2004
Susan Harrison Wolffis
The Muskegon Chronicle
When he dreams, he's never in a wheelchair.
"Well, one time I was," he says, "but the rest of the time, and that includes last night's dream, I'm ambulatory."
He waits a second or two, letting the eloquence of space and silence speak for him, as well as words and circumstance.
Not everyone uses words like "ambulatory" in casual conversation.
"OK," he says, a grin lightening the mood. "In my dreams, I'm walking."
It's been almost 10 years since Paul Novoselick has walked under his own power, longer than that since he's run or played tennis or driven a car to the corner store for a gallon of milk or put his arms around his wife and danced with her on their wedding anniversary, feet touching.
Now on the rare occasion they make it onto a dance floor, he's in a wheelchair, moving to the music near her.
"Actually, I've had two lives," he says. "Pre-multiple sclerosis and post-multiple sclerosis."
Chronicle readers have only known the post-multiple sclerosis Paul Novoselick, who was diagnosed with the progressive neurological disorder 20 years ago, just three months after being married.
In 1989, he added a weekly column about people with disabilities to his business and labor reporter's beat. His was a voice heard around the state of Michigan in advocacy groups, and as a columnist who often used his own experiences to tell the stories of the disabled.
"I was one of the lucky ones. Unlike other people, I have lived and worked a long time with M.S.," he says. "I stumbled on a way to make my career last longer by writing the column."
But in January, Paul had to give up the column that was published in newspapers across Michigan. He could no longer work or write after suffering a third nearly fatal M.S. "episode" in less than year's time. Since then, he has been under the care of Hospice of Muskegon-Oceana in his home.
"I don't know from day to day what my body will let me do until I try," he says. "It's a crap shoot."
As a columnist and advocate for the disabled, Paul has lived with M.S. in full view of the public, unafraid to write about things previously unsaid or issues previously faced.
This month, he wants to tackle the tough stuff.
Or as Cyndy puts it: "the demystifying of urine and poop."
"Nobody talks about it," Paul says, "but everybody has to poop."
He remembers a day in the office when a co-worker made a joke about being old some day and wearing Depends (adult diapers). Paul was wearing Depends at the time.
"It was one of those moments when I think, all of a sudden he knew what he'd said. He looked at me, and I looked at him, then I looked down like I was embarrassed," Paul says, "but I wasn't."
At this stage in his life, he is totally dependent on others to bathe and dress him, feed him on days his hands are too weak, and clean and tend to his bodily functions.
"When I was growing up, people didn't even talk about marital problems or divorce in public, let alone this stuff," he says.
When he and his wife first married, how could they have anticipated that he would need a catheter to drain his urine into a bag? Or that he would talk so openly about the need for Depends?
In most corners, such things signal loss of independence.
Not to mention, personal dignity.
"Hey, let's talk about it," Paul says. "I want to take the chance of people being a little startled in this column."
During the day, when no one else is around, he watches the news on TV.
Paul is consumed -- "the word I would use is galvanized," he says -- by reports from the war in Iraq.
"The war is really getting to me," he says halfway through May.
He has just seen a report on the rising number of amputees among the wounded U.S. military, as well as the Iraqi people.
The information weighs heavy on his mind.
"I know what it's like not to walk ... to have to use a wheelchair," he says.
Except in his dreams.
When he feels well enough, someone helps him out of his hospital bed into his wheelchair.
Sometimes, it is one of the home health-care aides, therapists or nurses who come during the day.
But usually it is his wife, Cyndy, who wraps a mesh pad around him and raises him out his hospital bed with a Hoyer lift, then transports him into the chair.
"It's such a hassle," Paul says.
He no longer has the strength to wheel himself once he's in the chair.
But one day late in May, he was able to retrieve his own e-mail on the computer near his bed, typing with "two lousy fingers" that had previously balked at even the simplest commands.
"Somebody might come in here who doesn't know me ... and feel bad for me," he says. "But I can tell you, I am the happiest I've ever been in my life."
He has waited all day for this conversation. It is May 25, four days shy of his 50th birthday, a milestone in almost everyone's life.
In his case, it could be called a miracle.
"To me, turning 50 is kind of scary," he says. "Age forces you to confront your own mortality, regardless of the M.S."
Even his own doctors say they weren't certain he was going to pull through his January hospitalization.
"Don't get me wrong," Paul says. "I'd love to walk. I'd love to run. I fantasize about that sometimes. If I could get up right now, man, I'd take off. I'd find some kind of shoes and sail down the street."
It happens to be a beautiful spring day, rain-free and full of sunshine. He looks out the window from his hospital bed in the living room of his home. Outside, the world moves at an urgent pace. Lawn mowers going on every corner, taking advantage of the good weather. Motorcycles whining. Bicyclists, runners, people with dogs -- all in pursuit of fresh air and exercise.
"I'd love to run again," Paul says, "but it's not meant to be."
He is still in bed, something he does to conserve energy when people are coming to visit.
"I don't like to say too much to most people about how hard some days are ... how I have to rally myself," he says.
He interrupts himself, asks for a piece of candy from the dish Cyndy keeps filled on a nightstand. He likes butterscotch best, but he cannot unwrap the cellophane and has to ask for help, before finishing the point he wants to make.
"Where was I?" he asks. "Oh, yes."
He pays the price physically when he's in his wheelchair for hours at a time. The next day, he sleeps more "and sometimes I'm grouchy," he confesses.
"But I like to push myself to the limit," he says. "As long as there are no lasting effects, I'll go at it again the next day."
He's been testing himself, staying as long as he can in his wheelchair, challenging himself for all that lies ahead: his 50th birthday bash, his daughter Alissa's high school graduation ceremony and open house, and whatever else is ahead.
"I like the fight," he says. "Man, I like the fight."
Copyright © 2004, The Muskegon Chronicle