Beating the odds: Man defying disease that is often fatal set to get college degreeDetermination. Focus. Hard work. All are qualities often attributed to college students about to walk through graduation. But when 37-year-old Mark Boatman rolls across the graduation stage to receive his bachelor’s degree in journalism, by all accounts he will embody those traits.
By: Wendy Reuer, INFORUM
MISSOULA, Mont. - Determination. Focus. Hard work.
All are qualities often attributed to college students about to walk through graduation. But when 37-year-old Mark Boatman rolls across the graduation stage to receive his bachelor’s degree in journalism, by all accounts he will embody those traits.
Boatman was diagnosed at age 5 with Duchenne muscular dystrophy, a disease that has taken away his muscle control, leaving him unable to breathe or move most muscles of his own accord.
Despite the Jamestown, N.D., native’s condition – which is typically fatal much earlier in life – Boatman has defied the odds, moved more than 800 miles away from his family and caretakers and enrolled in the University of Montana’s School of Journalism. Later this month, he’ll graduate with honors.
‘This happy, smiley kid’
It was around Aug. 1, 1980 that Dr. Curt Nyhus, now the Fargo Sanford Walk-In Clinic Manager, started his first job as a resident doctor at a Jamestown clinic. That Friday, he had what he thought would be a routine appointment with Jim Boatman and his son, Mark.
Nyhus said he still remembers it like it was yesterday. Jim Boatman wanted Mark’s balance and coordination checked.
Nyhus said something just clicked and he remembered reading about muscular dystrophy, although he had never treated a live case. Nyhus asked Mark to do a simple sitting test, then ordered a blood test that would show high indicators of muscular dystrophy.
“Mark was just this happy, smiley kid who looked perfectly normal,” Nyhus said.
Boatman was diagnosed with Duchenne muscular dystrophy. At the time, the average life span of a child diagnosed with the debilitating disease was 15 or 16 years.
Jim Boatman, who was not yet 30 years old, said the diagnosis came as a shock to him and wife Linda Boatman.
“Basically I told my parents, take me home and give me the best life they possibly can. Spend as much time with me as they can,” Mark Boatman said.
Although the diagnosis could have darkened Mark’s life, he decided to shed light on the disease, studying it and even helping Nyhus with his treatments, Nyhus said.
Nyhus continued to treat Boatman throughout his life, the only patient Nyhus has ever had with Duchenne.
“I gained way more from him, from taking care of him, than I think he did from me,” Nyhus said. “He helped me take care of him. So often, he would know trouble signs and let me know.”
By high school, the disease confined Boatman to a wheelchair, but the avid sports fan was not slowed.
“Mark didn’t want to sit around and let things pass him by,” Jim Boatman said.
Boatman said it was important to him to live as normal a life as possible. So, like any other 18-year-old, he moved out of his parents’ home after graduation and into Jamestown’s Dewey Apartments, which are designed to cater to people with disabilities.
Confined among the old
All was going well until around 2003, when Boatman’s muscular dystrophy looked to get the better of him. His diaphragm was weakening and he dropped down to about 86 pounds, as eating and breathing were becoming nearly impossible.
“That was a really tough time. No doubt it was a lot tougher on him, but he tried not to let on,” Linda Boatman said. “It was pretty scary; we thought it may be the end for Mark.”
Boatman was forced to decide if he was willing to go through an invasive tracheotomy to help him live through aids, such as a ventilator, or refuse, knowing he would likely die soon after.
“I went to see him and it was kind of crunch time, there was just no way he could go on,” Nyhus said.
Boatman moved forward with the surgery and after recovering at a Fargo rehab center, he was eventually moved to a nursing home in Jamestown – a place that proved one of Boatman’s biggest challenges.
“In a nursing home, you don’t have much freedom, you don’t have any privacy and you pretty much have to do things on their schedule,” Boatman said. “Maybe for somebody that is 90 that would be OK, but for someone that is in their 20s, who wants to do that?”
Boatman said his parents and sister Becky helped him remain sane during that time, often taking him on outings and continually showing him their support.
“Once I started feeling better, I told my folks I was going to pursue getting out of the nursing home.” He said. “I don’t think they thought there would be a chance of it.”
Mother letting go
While in the nursing home, Boatman continued work on his blog, where he has gotten to know many other patients with Duchenne. He caught the eye of Theresa Martinosky, a Montana caretaker of another young man suffering from muscular dystrophy.
The two got to know one another online, and they hatched a plan for Boatman to move to Montana, where laws and services are more conducive to helping those with disabilities than in North Dakota.
With a deep admiration and gratitude, Boatman said he often thinks of how difficult the day of the move was for his mother.
A licensed practical nurse at North Dakota State Hospital, Linda Boatman was both mother and caretaker. She was faced with trusting a virtual stranger with Mark’s care.
“I could see the excitement in his eyes, there was no hesitation on his part. He was ready to go for it,” Linda said. “It was tough. I figured if Mark could do this, certainly I could.”
Each morning, it takes Boatman about an hour and a half to get out of bed and get ready for the day, with the help of a nurse and Martinosky. Throughout the day, he retains constant care. “If my trach gets clogged, or my ventilator comes undone, I could die within five, six minutes,” Boatman said.
He is able to operate his wheelchair through a breathing mechanism. Voice recognition software and a head and nose control for his laptop help him work and study.
“I’m able to run a computer as quick as anybody else,” he said.
Boatman began his education at the University of Montana in Missoula in 2007. A life-long newshound, he said he was attracted to journalism as a way to give others a voice, a mode of sharing stories.
After a nervous wait, Boatman was accepted to the university’s journalism school. He later landed an ink-slinger’s internship at The Missoulian, the city’s daily newspaper, with a circulation of about 30,000.
Missoulian City Editor Michael Moore said journalism is a physically demanding career, especially at The Missoulian, where reporters must be ready to run out for breaking news on the side of a mountain or along the base of a rocky river bed at a moment’s notice.
While Moore said he was cognizant of Mark’s condition when assigning stories, over the eight-week internship, Boatman’s story load varied.
“Frankly, it wasn’t very hard to accommodate him. He’s a very hard worker. He really believes in our profession,” Moore said.
While the newspaper industry faces an uncertain future, and many larger papers have cut staff in recent years, Boatman hopes to pursue a job in the field, perhaps in a small weekly paper or somewhere that will allow contributions from off-site.
Moore said that if he had an opening that was fitting, Boatman would be on the list of possible hires.
“Frankly, everybody has something about them that makes them their own weird little self. Every reporter is a different person. Mark’s difference stands out in a physical way, but it’s not something that would preclude him from being a good fit in a newsroom,” Moore said.
While Boatman calls his time at the Missoulian inspiring, Moore said it was Mark who did more of that.
“I would say he was never less than impressive or inspirational to me,” the city editor said.
Though Boatman’s initial diagnosis more than 30 years ago suggested he might die as a teen, today’s medicine still predicts most with Duchenne will die by age 25.
During a recent visit by Boatman’s parents to Montana, and during the good-natured ribbing common in the family, Jim Boatman pointed out a few gray hairs finding their way to Mark’s head.
“He said to me, ‘I never thought I’d live long enough to have gray hair,’ ” Jim Boatman said.
Next week, the Boatman’s will travel back to Montana for Mark’s graduation May 12. It is something they say they could not be more proud of.
Mark is quick to point out he hasn’t traveled alone.
“My parents, my sister (Becky), my whole family have always been supportive. This wouldn’t have been possible without the help of a lot of different people.”
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Readers can reach Forum reporter Wendy Reuer at (701) 241-5530