All About Multiple Sclerosis

More MS news articles for March 2004

Full disclosure: Columnist shares details of his struggle with multiple sclerosis

Monday, March 01, 2004
Susan Harrison-Wolffis
The Muskegon Chronicle

Turning the corner

Editor's note: After battling multiple sclerosis for 20 years, Paul Novoselick is no longer able to write his disabilities column. But Paul still has much to say about life, family and battling a progressive disease. In this monthly column, Paul shares his journey

Each night, before sleep calls and his schedule of medicine kicks in, a man whose world is bordered by a hospital bed and the woman he loves talk as if there is no tomorrow.

Sometimes it's silly stuff: college memories, stories about their daughter and other adventures they've shared, what the dog's done that day.

But most nights when Paul and Cyndy Novoselick talk, things end up getting serious.

Conversation turns to the big picture in life: what it is like to live and love and work with multiple sclerosis, the neurological disorder with which Paul was diagnosed three months into his marriage nearly 20 years ago.

"Being where I'm at," he says, "I've had time to reflect."

Since the end of January, Paul's been home, his physical world limited to and defined by the hospital bed he inhabits in the family's living room once used for formal occasions and his daughter's piano practice.

Now the room is a jumble of hospital equipment, nurses, home health care workers, family and friends -- and a man not yet 50 faced with the urgency of life.

"I have turned a corner in my life," he says. "Sometimes in directions I'm not happy with or don't want to go ... but that's what's happening. I've turned a corner, a big one for me and my wife."

On Valentine's Day, while other couples celebrated with chocolates and champagne, the two of them snuggled in his hospital bed, split a pizza and watched a Jack Nicholson movie.

In between bites of pepperoni and stolen kisses, they planned his funeral.

"Even so far as to who's going to preach," he says. "I don't know how long I'm going to last."

If that sounds morbid, it is not the intent.

Ever since Paul Novoselick broke new ground at The Chronicle in 1989, writing a weekly column about people with disabilities, he has introduced things once left unsaid into every conversation.

"So many people are afraid to talk," he says. "They're afraid to address things that shouldn't be off-limits."

So he saves up things he wants to tell people, especially Cyndy, accumulating topics through the day like so many chapters in a book.

"He's such a deep thinker," she says. "I just love that about him, the way his brain works, the way he comes up with things."

After dinner, when the dishes are done and just the two of them are home together, she pulls her chair close, holds his hand and they talk. They talk until it is time to call it a night, promising more in the morning.

"We've had the most incredible conversations these last weeks," Cyndy says.

On Jan. 20, Paul was hospitalized for the second time in 10 months with a major "episode" of multiple sclerosis, fighting for his life with major doses of steroids that "bring him back" but leave him battling hallucinations of horrifying magnitude.

No matter how serious his next bout may be, and there will be another with this disease, Paul has made everyone promise -- Cyndy, his doctors, his health care workers -- there will be no more steroids.

He came home from the hospital Jan. 27 under the care of Hospice of Muskegon-Oceana, not because death is imminent but because of the services and level of care the agency can offer.

"Am I scared?" he says, repeating a question friends dare to ask on days it seems appropriate. "Isn't everybody scared of death a little bit?"

It is not his final answer.

"Really, I'm pissed," he says. "I've worked so hard. I want to retire and be able to travel and have time with my Cyndy ... and I haven't frickin' moved in four weeks."

He's lost count. It's been almost six weeks since, as he puts it, never one to mince words, that he's "stared out the same frickin' window at the same frickin' pine tree."

But when he came home from the hospital in January, he was so weak he couldn't lift his head. He couldn't hold a fork or spoon or a pen -- the tool of his trade. Forget about sitting at a computer. Someone had to help him put on his glasses, open and read his mail, hold a cup of water and straw to his lips.

When he came home from the hospital, he says his legs felt like "the dried-out bones you find on a beach." They feel stronger now, but he's only been in his wheelchair once, and the ordeal left him exhausted.

Just a few years ago, he did wheelies in that chair, careening around all sorts of corners, traveling as fast as he could, the same way he raced motorcycles as a kid.

"You only get one chance at life ... " he says one day early in February.

It is a good day. He's charmed one of his home health aides from Hospice, a woman who has a friend with a motorcycle and sidecar. The two of them have been cooking up the possibility of an outing when he's stronger.

One story leads to another, and soon he's telling about the summer in college he and a buddy hitchhiked across country with his parents' blessing -- "amazingly enough." The years fall away as he talks. His voice, a little gravelly and slow moving these days, grows stronger.

"You can't live your life thinking something's going to happen," he says to friends from work who come to visit on their lunch hour.

When it is time to leave, he asks them to move in just a little closer.

"I am afraid of one thing," he says. "I'm afraid of being forgotten. I know old people are like that, too. When people stop by (to visit), I appreciate that."

He and his bed have become the center of all things in the house since late January. It is where visitors congregate, where his nurses and home health aides care for him, where the Novoselicks' daughter rubs him on the head -- her way of saying goodbye -- on the way out of the house.

"I haven't smiled much recently," he says one day, making an unexpected turn during casual conversation, "because this is serious business. It's almost like I have to learn to smile again."

To help him laugh, a friend loans him a video of "The Blues Brothers." While he's at it, he wants to see "Casablanca," his all-time favorite movie, with his all-time favorite scene: Rick and Louis on the runway on their way to fight with the Allies.

It is the friendship between the two men that is so special to him -- it reminds Paul of his own friendships.

"I'm for full disclosure," he jokes.

His is a disease once whispered about; sometimes even kept secret until the person started to stumble in public or slur words or need a wheelchair to get around.

Paul has always talked openly about MS, which sapped his strength and reined him in; a disease that wasn't his and his alone to face. It also became the property of his wife and daughter.

He not only talked about such things; he wrote about them in a weekly column carried by newspapers across Michigan until the end of 2003, when he turned a corner he dreaded.

"I am no longer able to be a reporter on a beat," he says.

When he was in the hospital in January, Paul painstakingly dictated a final column one long night to his wife. "The spirit is willing, but the flesh is weak," he wanted to tell people, relying on one of his mother's favorite sayings "when she grew too tired in her later years; it applies to me now."

Weary, yes, but Paul Novoselick's voice is hardly silenced.

Nor is his story.

It continues here, every month.

Copyright © 2004, Muskegon Chronicle