Sick and Tired

A tragic accident, underpaid, overworked personal-care attendants, and one pissed-off patient

The anecdote is an extreme example, but it's not entirely an aberration. Doctors, social workers, and other disabled people who have reached out to Marco in sympathy have often been pushed away. "It's a mess out there, but in all honesty Mike contributes quite a bit to his mess," ventures John Schatzlein, manager of the disability-services program at Catholic Charities of the Archdiocese of St. Paul and Minneapolis, and paraplegic himself. In the past Schatzlein has arranged for Marco to get furniture for his apartment and has tried to secure him reliable housing and home care. But Schatzlein's efforts have generally ended in exasperation. "Mike has a very checkered history of cooperating with authority and working systems," says Schatzlein. "A lot of people have thrown up their hands in frustration. He keeps coming back and calling me when he's burned everybody else out."

Like Jim Boen: Marco and Boen met when the former was flat on his back at a physical-rehabilitation facility at Fairview Hospital about three years ago, recovering from surgery to close a bed sore on his butt. The 68-year-old Boen understands well the anger that comes with the loss of your limbs. Boen became a quadriplegic 49 years ago as the result of a gymnastics accident. He went on to earn a doctorate and took a post as a biostatistics professor at the University of Minnesota, where he was also associate dean of public health.

"None of the nurses could stand him," Boen recalls of his introduction to Marco at Fairview. "He was speaking in almost continuous expletives, throwing things at the nurses."

James Jukes

Boen offered to arrange for a surgical procedure that would help Marco regain some use of his hands, primarily the ability to grasp objects. To demonstrate the efficacy of the operation, he remembers, he produced an unloaded pistol and showed how similar tendon surgery allowed him to rapidly click off shots.

In addition to that surgery, Boen arranged for Marco to undergo a colostomy. He also linked Marco up with a personal-care attendant he'd relied upon himself. Over a two-year period Boen became something of a mentor. He visited Marco's apartment on a weekly basis and put up with as many as five phone calls per day from him. The relationship was often tumultuous. "One time he threatened to fight me," Boen remembers. "He wanted to hit me over the head with a baseball bat."

Boen says it all came to an end because Marco refused to follow through on two promises: to keep a job and to not mistreat his PCA. "He's narcissistic," Boen explains. "He thinks about himself all
the time."

Counters Marco: "It's a learning process. You don't go to school for four years to learn to be a quadriplegic before you get hurt. I know that I've pushed some good people away, but that's all in the learning process. The stubbornness comes with the fight that's in me."

Marco is not a hero. He has not triumphed over adversity; he has become mired in it. If the system that exists to serve him has failed, he has failed the system right back. But is heroism a requirement for receiving adequate medical treatment and social services? Or, as Sindy Mau of the Advocacy Center for Long-Term Care puts it, "Does someone have to be a model citizen in order to reap the full benefits of the system?"

 

It is Mike Marco's 37th birthday. He views the occasion as just one more miserable marker of time lost, time wasted. "In my opinion, from age 31 to age 37, I haven't lived," Marco says, a sentiment he expresses frequently. "It's been like a five-year jail sentence. I've sat in here and watched the seasons change, and at times I've sat in much less pleasant settings than this."

Marco still talks about attending college, or studying computer science. He even boasts about his desire to travel through all 50 states in his wheelchair, bringing awareness of the needs of people with disabilities and raising money for an assisted-living facility. Most of the time, though, he's just angry.

Marco knows his injury makes it unlikely that he'll live a long life. Jim Boen, at age 68, is the exception rather than the rule. Marco has suffered two urinary-tract infections in the past year. The possibility of a stroke is a constant threat because the paralyzed part of his body is unresponsive to warning signals, such as heat or pain, which can signal an elevated blood pressure. Earlier this year he broke his ankle but didn't realize anything was wrong until he began sweating profusely. Quadriplegics are also at risk of respiratory failure, because their breathing capacity is only about one-fourth of what it should be. "I probably don't have much time left," Marco often says.

Despite his grim mood, a small birthday celebration is under way this evening. A half-eaten stuffed-crust pizza sits on a chair, a present from Marco's neighbor, Cherryl. The baseball playoffs are on TV, the Yankees versus Seattle. Cherryl, who is blind, sits facing away from the TV screen, listening to the play-by-play, occasionally pounding her fists on her knees in reaction to the game. Renada has yet to show, but she and Marco have settled their differences. ("At least she calls," Marco explains. "There's some that don't even call and you're just stranded.")

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1 comments
TJhomas
TJhomas

Testing, one, two, three ...

 
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