General

SMA: See Mark Amaze

This week, in a measure of extending my own personal Thanksgiving a little longer, I’m sharing my series of columns that I wrote in 2003 for The Daily Times in Ottawa, Ill., about the remarkable tale of Mark Wiebe. Mark’s story, which I also published in my 2004 book “Northern IlliNOISE: Tales of a Territory,” remains the most meaningful that I’ve been blessed with the opportunity to tell during my career. 

SMA: See Mark Amaze

The WISCH LIST

March 11, 2003

When some kids dream, it’s visions of sugarplums they see dancing in their heads. When Mark Wiebe dreams, it’s something entirely different that he sees dancing in his.

Himself.

“When I dream, I’m never in a wheelchair,” said Mark, a 16-year-old junior at Ottawa Township High School. “I’m walking, or floating or flying …”

“I don’t think I’ve ever had a dream where I’m in a wheelchair.”

That’s in spite of the fact that he’s hardly spent a day outside of one. Just months after his birth, Mark – the son of mom, Terry, and stepdad, Brian Scanlon, of Ottawa, and father, Jeff Wiebe, of Florida – was diagnosed with a form of muscular dystrophy now known as Type I Spinal Muscular Atrophy (SMA), or Werdning-Hoffman Disease.

An incurable affliction of the spinal cord, SMA affects the body’s voluntary muscles used for simple activities such as crawling, walking, head and neck control and swallowing. In Type I – the most severe case – those affected are, for the most part, paralyzed.

“The cells don’t build up in your muscles, they just die off, and no one knows why,” Mark explained about SMA, a fairly common but largely unknown terminal disease that affects one in every 6,000 live births, and in most cases leads to death by age 2. “You need those cells to grow, so you get weaker as you get older.”

Such a dickens of a disease is SMA that it has left Mark’s body weighing only 40 pounds and with just enough motor skills to double click a computer mouse. It also has forced him to spend each day wearing braces on his torso and feet, and each night wearing ones on his hands and arms. After 16 years of that drill, Mark is a bigger expert on braces than any orthodontist you’ll find.

“It’s kind of funny,” he said. “I told my mom one night, the next thing you know, I’ll need braces for my eyes … Actually the only things (SMA) doesn’t affect are your eyesight and brain.”

Or, apparently, your sense of humor. Or your optimism. Or your friendliness.

Or maybe that’s just Mark, whose engaging personality has allowed a young man who can’t even move his arms to reach out and touch more people than AT&T.

“He’s an inspiration,” OTHS English teacher Jim Gayan said. “With having been dealt a terrible deck, Mark still always comes up a winner. He gets joy out of life under the most extreme physical restrictions. If and when I ever grow up, I hope to be like Mark.”

Join the club – if you can get in.

“Mark’s spirit is an amazing thing,” said Sue Williamson, a theater and speech teacher at OTHS. “Most teachers at the high school who have come into contact with him feel that he’s the teacher and we’ve been the students.”

For many of the instructors at OTHS, Mark – exceedingly bright and ever bubbly – was a true treasure among Ottawa’s Pirates. And that’s why it was such a downer for everyone on New Year’s Eve in 2001 when Mark was rushed to the hospital with bowel blockage and learned the next morning that his days at his beloved OTHS were over.

“They said I couldn’t go to school any more and that I wouldn’t be able to drive my electric wheelchair any longer,” recalled Mark, who had become too frail for those exertions. “It was a big, big change.”

In typical fashion, however, Mark simply took what appears to be a bummer of a situation and turned it into a boon.

“A lot of good has come from me not going to school,” he said. “I think God had it happen for a reason.”

And it isn’t as if Mark doesn’t still reason on a daily basis. He continues to study at OTHS, same as ever, only now classes are held in the cozy confines of his bedroom. Each morning and afternoon during the school year, OTHS teacher’s aide Debbie Damron delivers Mark’s classwork, writes out his answers and tries to address any questions he might have.

Ask Damron, though, and she’ll tell you that she’s the one doing most of the learning.

“Mark has taught me more about living and life than I could ever teach him,” she said. “For a young man of 16, he has such a grasp on what life is all about … He’s a young man who never once asked me to do anything without saying please and thank you …

“And when I’m down about something, Mark will say, ‘Debbie, let’s pray for you,’ and he’ll say a prayer. Then I’m sobbing because I know he cares about me, and that I’m not just a teaching assistant.”

That’s the kind of effect Mark has on people. His optimism is infectious and his pull downright gravitational, which is why he counts the likes of well-known muralists Byron Peck and Colin Williams, world-renowned marble collector Gino Biffany, and Christian rock superstar Michael W. Smith among his friends and acquaintances.

In spite of his limitations, Mark is living a life that’s richer than Donald Trump and more diversified than his stock portfolio. He’s a poet, a former chorus singer, a devout Christian, a marble collector and a self-taught webpage designer who has his own site (shplooky.com) and one day hopes to run his own computer business.

“Sometimes,” Jim Gayan said about Mark, “he makes me feel like I’m slow and lazy.”

Mark is also a giver. While on Ottawa’s student council, he served as the head of the school’s Hospitality Team, providing care packages for new students. Among his many other good deeds, Mark once spent a day downtown collecting business cards for a dying boy who was trying to get his name in the Guinness Book of World Records.

“Mark is not just wanting people to help Mark,” Damron explained. “That’s not Mark’s purpose in this world. He reaches out to others. And that’s where the inspiration comes from.”

“I can’t say I’m perfect and that I help everyone,” Mark said. “But I try and help when I can. It makes me feel good, I guess. Sometimes, if I’m having a bad day it makes me feel good to a point where I can say, ‘This is a pretty good day.’ ”

Seems like there are a lot of those with Mark Wiebe around.

“I can’t say that I never get down, because I do,” he said. “One thing I know, though, is that God is always there for me. And I have great friends and family to remind me to look at the good stuff and see what I really have.”

And now Ottawa knows what it really has, as well.

Coming Tuesday, Part II of Mark’s life story …