Sick and Tired

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

At 9:30 on a Tuesday morning, Mike Marco places a CD on his stereo and hits play. "Gimme All Your Lovin'" punctures the air of his one-bedroom apartment in St. Louis Park. "Working music," he says grimly.

A makeshift collection of well-worn furniture is scattered around the room: wooden chairs without seats; a lumpy, tan two-person couch; a brown recliner. With the exception of the Aiwa stereo and a 19-inch TV set, all of the furniture was acquired from Catholic Charities for $100. As ZZ Top blares, Marco guides his $14,000 electric wheelchair down the hall toward his bedroom. The white walls are streaked with black, the results of navigating the 300-pound vehicle through a narrow space.

Marco positions himself next to his electronic bed. Metal rails run down the sides to keep his six-foot-two-inch frame from falling to the floor while he sleeps. The softball-size hole in the footboard is a reminder of the time he inadvertently smashed his knee through the faux wood. A Sammy Sosa poster is the room's only decorative touch. The air smells of pharmaceutical supplies and is dense and dank with cloistered humanity.

James Jukes

It took Marco more than two years to learn how to get in and out of his twin bed, one of the few morning rituals he can perform by himself. ("You literally can't wipe your butt anymore," he'll tell you. "It takes some getting used to.") After detaching the wheelchair's left footrest and armrest, he wedges a wooden plank under his butt. Bracing himself with his left hand on the bed, Marco awkwardly slides his heavy frame down the board and into bed. Then he reaches back for his legs, which stubbornly cling to the wheelchair. He heaves them onto the bed one at a time, each leg thudding down on the mattress like a dumbbell.

Renada, a personal-care attendant, is assisting Marco this morning. She is somber but agreeable, responding to his constant requests for help with silence. She removes her patient's sweatshirt and sweatpants. He is naked underneath, save for the mass of tubes, bags, and bandages around his waist that pump morphine and a muscle relaxant onto his spinal cord and permit him to perform bodily functions without immediate assistance from others. One of the things he recalls his former wife saying before she left, he relays dryly, was "'Mike, I don't know if I can live with bags.'"

A partial quadriplegic, Marco cannot feel anything below his chest, but his body is a living, breathing medical chart. One wrist is marked by a scar, left by an infected IV line. Bandages cover sores on his toes where the skin has worn away. The right side of his forehead, where he wore a metal halo for seven weeks, is slightly indented. A blue-green, snakelike scar runs down his spinal chord, which doctors fused together five years ago in a five-hour operation.

Renada hands Marco a damp washcloth and squeezes several dollops of soap onto it, and he begins scrubbing his arms, shoulders, and chest. When he's finished she hands him a damp towel to wipe off the soap. Then she performs the same task on the parts of his body that he cannot reach. She scrubs his back, lifts each leg straight up in the air to wash them down. She leaves him one scrap of dignity: Marco cleans his genitals himself. "Nothing's sacred anymore," he mutters. "Nothing."

Renada replaces Marco's Frisbee-size overnight urine bag with one that's slim enough to be concealed by a pant leg. She fortifies his bandages, sprinkles medicated powder along his flaccid thighs to prevent chafing, wrestles socks and sweatpants onto his uncooperative legs. Then Marco reverses the slide along the board from bed back to wheelchair and heads off to the bathroom to wash his hair in the sink, brush his teeth, comb his hair, and shave. The jerky razor-swipes of his crippled hands leave his face speckled with blood. By 11:00 a.m., an hour and a half after beginning his morning routine, Marco is ready to face the day.

This was the easy part.

 

On July 28, 1995, Mike Marco was leaving his native Chicago for Colorado to study physiology at Red Rocks Community College outside Denver. His Nissan Sentra was packed with everything necessary to make a fresh start in a new state. Stacy, his wife of three years and sweetheart for more than a decade, was to follow in a couple of weeks.

The westward move was designed to get Marco's life back in order. Since dropping out of high school at age 16 and earning his G.E.D., he had worked in print shops and as a personal trainer. More than a decade of lifting weights had transformed him from a gawky teenager into a chiseled, 270-pound man. But in the late 1980s Marco had begun to use his physical strength to cause destruction. Alcohol and drugs were playing a primary role in his life as well. "I used to solve problems with my fists," he says of the bullying and bar fights. "I was a nasty individual at some point there, someone you didn't want to see."

As Marco tells it, he was so eager to turn over a new leaf that after fueling his car for the trip, he forgot to pay. Realizing his mistake, he pulled off Interstate 39 near Mendota, Illinois, about 100 miles from the Windy City, with the intention of calling the station and rectifying the situation. He never made it to a phone.

Passing what he remembers as a Lincoln Town Car in the deceleration lane, Marco moved over toward the exit ramp. At that moment he realized the other car was still beside him. He jerked at the wheel hard, hoping to avoid a collision, but lost control of the Nissan, which skidded sideways as if on a sheet of ice, then tumbled side over side. Marco's body flew through the windshield.

The next thing he can recall is lying on the roadside with the cars whizzing past. It was difficult to breathe. A man, probably a passing motorist who had stopped to help, knelt over him. "I couldn't feel any pain, but I wanted to wait until he looked at me before I moved," Marco recalls. As the stranger began to grasp what had transpired, his face ballooned with panic. "Hurry up, he's still alive!" the man screamed. Lying there, Marco thought to himself, "What? Am I gonna die here? Is this it?

"Every time that mark passes by, it's like a cold slap in the face," he says of the accident's anniversary. "It's not a good day to be around people--to say the least."

Marco's immediate reaction to losing the use of his legs and hands was denial. "Jeez, they don't know me," he recalls thinking of the doctors and nurses. "I'm gonna move again." But as the weeks passed--first in an intensive-care unit in Chicago, then in a nearby rehab facility--the permanence of his disability began to sink in.

Just a few weeks after the accident, his wife traveled west as planned. When she finally returned to visit, in January of the following year, the two had a confrontation about whether she was sleeping with other men. Marco was served with divorce papers while he sat in a Chicago nursing home. It was a second devastating blow: Stacy had been the only family he had. When Marco was two, his father abandoned his mother and their only son; he died a few years later. When Marco was ten, his mother committed suicide. His maternal grandparents raised him, but his grandmother died when he was a teenager, and he hasn't communicated with his grandfather for years. "He was psycho," Marco says. "He was nuts. That's where I got all the negativity that I have. I watched him beat my mom many times when I was seven, eight, nine years old. No good. No good at all."

A year after the accident, alone and broke, Marco was hit by the realization that he was fated to spend the rest of his days in a nursing home, waiting to die. He resolved to kill himself. "I was just waiting for the chance to OD," he recounts. "I was just waiting to die. I came pretty damn close, but when it came down to it, and all the nonsense was in front of me, I just couldn't do that." What ultimately stopped him, he says, was the thought that some people are even worse off than he.

In August 1997 Marco moved to Minnesota, hoping to enroll in an assisted-living program he'd learned about while doing some research on treatment. But he ended up at another nursing home instead. He has been stuck in a pitiless game of institutional Ping-Pong ever since, bouncing from his apartment to nursing homes to psychiatric wards to group homes and back again.

He subsists on a $512 federal disability check, $80 in state aid, and $32 worth of food stamps. Of that, $124 goes to pay his subsidized rent. He has been diagnosed as clinically depressed and labeled a drug addict. "Ever since I broke my neck, and this is the God's honest truth, I've had no life," Marco says.

Some days Marco still thinks about killing himself. He takes antidepressants to stave off temptation. "I can't kill myself," he reasons. "It's just not right. Even without the religious beliefs, you just can't do that. It's not normal." Ultimately, in Marco's eyes, if God had wanted him to die, his life would have ended along the side of I-39 five years ago. On good days, he thinks there must be something left for him to contribute, some mark to make. On bad days the accident seems like punishment, payback for years of bad behavior. "The odds catch up to you sooner or later. It just so happens that that day my body wasn't full of drugs and I wasn't drinking and I wasn't speeding," he reflects. "There's a lot of regrets I have before the accident. A lot of regrets. But there's gotta be a reason that I'm here."

 

Wearing a white Mickey Mouse sweatshirt and a scowl, Mike Marco is buzzing along 79th Street in the shadow of the Mall of America. There is no sidewalk; Marco and his wheelchair are competing for road space during the afternoon rush hour, bumping along at five miles an hour en route to the bus station located inside the Mall of America's parking ramp. "I'm just glad there's a light up here," he says as the traffic whizzes by. "It slows shit down a bit."

Marco has just come from a doctor's appointment at a Bloomington clinic. The visit was essentially an interview, and he made the cut: A new doctor has agreed to take him on as a patient. Marco estimates that he's gone through ten primary-care physicians as well as a half-dozen pain specialists since the accident.

The appointment concluded at 4:45, but his ride back to St. Louis Park failed to materialize. The driver was supposed to have picked up another patient before returning for Marco, a trip that should have taken no more than an hour, even at rush hour. Marco called the company that arranged the transportation, but the office was closed for the day. At 5:15, with no other transportation options, he headed for the bus station.

The Number 80 bus is waiting when he arrives. The driver clears out five seats to make room for the wheelchair, brings Marco aboard on the elevated lift, and straps the chair in. Marco keeps a close watch on the proceedings, making sure everything is well secured. "I only care to break my neck once," he cracks.

As the bus heads north, Marco is still livid about being stood up at the doctor's office. "That's crazy shit," he says. "That [driver] didn't call anybody. And he's got a radio in there. Unless he's in the hospital, there's no excuse."

Transportation woes are an everyday reality of life in a wheelchair. To schedule a ride with Metro Mobility, the government-sponsored transportation program for the disabled, a handicapped person must call in at 6:00 a.m. four days in advance. Otherwise all the rides are likely to be booked. As a result, Marco chooses to use the services of other companies, along with public transportation.

Marco tells of the day last fall when he attempted to catch a Metro Transit bus along University Avenue in St. Paul. When the bus arrived, the driver informed him that his lift was broken and that he'd have to wait for the next vehicle. At this, Marco decided to make an impromptu stand for disability rights: He rolled his wheelchair in front of the bus and, despite the driver's loud protestation, refused to budge. Eventually another bus arrived and most of the passengers filed onto the other vehicle.

"Half the people got off the bus and shook my hand," Marco recalls. "Of course, the other half were pretty mad." By the time the transit police arrived a few minutes later, the driver had gotten the lift working.

This afternoon Marco's bus is headed to downtown Minneapolis, where he'll be able to catch another bus back south to St. Louis Park. This transportation contortion is necessary because Marco knows from experience that unless he catches it at the beginning of its run, the bus to St. Louis Park will be too full to accommodate a handicapped passenger.

By the time Marco arrives at his downtown stop, it's past 6:30 and the sky is darkening. Renada is scheduled to show up at his apartment in 20 minutes, and Marco worries that she'll take off if she doesn't find him there. Then he'd face the prospect of being unable to change his urine bag, which might mean yet another trip--this time to the hospital. He tries reaching her on the phone, but without luck.

A bus arrives and Marco rides the elevator aboard. After several minutes of discussion with the driver--while a half-dozen other passengers wait to board--Marco is sent back down the lift armed with a bus map: Wrong route. He attempts to make sense of the pamphlet but only grows more frustrated. "It's just like a street map, right?" he grumbles, clumsily attempting to fold it with his disfigured hands. "Folds like an accordion." In the end he crumples the map and stuffs it in a trash can.

The correct bus arrives a few minutes later. Headed home at last, Marco receives more bad news from a fellow passenger: The Chicago White Sox have just lost another playoff game to the Seattle Mariners. Marco played baseball as a kid, and watching his hometown team is one of the few things that can distract him from the day-to-day. Now the Sox are finished till next spring.

His only solace is neatly folded in the fanny pack wrapped around his knees: a prescription for Valium from his new doctor. Many quadriplegics take Valium because it helps reduce "spasticity," the involuntary twitching of muscles. When Marco checked into the hospital in late August for what turned into a miserable two-week stay, he was taking 30 milligrams per day, an exorbitant amount, and the doctors immediately cut him off. It has been almost two months since his last dosage. "The first month was rough," he says. "No sleep. They just took me off of it cold. Nothing."

Marco arrives home at 7:30 p.m., more than two hours after leaving the doctor's office in Bloomington. Fortunately, Renada was running late and has just pulled into the parking lot. The pharmacy near his apartment stays open until 9:00, and Marco looks forward to a dreamy night of sleep.

 

Stories about disabled people turn up all the time. They're almost always heart-warmers--one triumph over adversity after another. The wheelchair marathoner. The paraplegic defying the odds to walk again. The superhuman social worker who unflinchingly cares for the physically challenged.

The extreme example, of course, is actor Christopher Reeve, who suffered a spinal-cord injury while horseback riding. Reeve is the alpha male of the disability movement. He has helped raise millions of dollars for spinal-cord research as chairman of the board for the American Paralysis Association; started the Christopher Reeve Foundation; even returned to the stage and screen. He is also blessed with round-the-clock nursing care and the best equipment money can buy, including, according to press accounts, a $100,000 exercise bike.

But Minneapolis psychologist Lynn Lockhart says the reality for most disabled people is far grimmer. "It's easy for him to smile because he's not dependent on the state to pay for [personal-care attendants] and he doesn't have to rely on Metro Mobility," Lockhart, who is blind, says of Reeve.

Lockhart notes that a certain amount of psychological turbulence--anger, resentment, self-pity--is inevitable with any serious accident or sudden illness. "A feeling of powerless rage is part of what happens with a person coping with a disability," she says. (Or, as Wesley Snipes's character observes in The Waterdance, a 1992 film about three men struggling with their spinal-cord injuries: "Even a quad needs to slug a man sometimes.")

No wonder. Between transportation problems, the difficulty of finding accessible, affordable housing, and the lack of reliable home care, it's not hard to imagine how a person can literally be driven mad. For instance, because of his isolation and poverty, Marco is completely dependent on state-subsidized personal-care attendants (PCAs) to get him through the day. It is hard, inglorious work, and the pay is low--generally eight to nine dollars an hour. Not surprisingly, there's a chronic shortage of reliable attendants. "We have a PCA shortage right now," says Eva Hansen, an individual advocate with the Metropolitan Center for Independent Living. "For the amount of money they're making, they surely could go to McDonald's and work."

Mike Dreier, who runs a PCA company called Minnesota Independent Living Services and is himself a quadriplegic, says he'd hire 15 more people right now if he could find them. "It's been exacerbated by the economy, but it's always been tenuous," says Dreier. "You're always on that bubble there."

In Marco's case, the bubble keeps popping. Either his personal-care attendants don't show up or he drives them away by being abusive. And when his care falls through, life comes to a halt. "It means that he might not receive assistance in going to bed at night," says Sindy Mau, an ombudsman with the nonprofit Advocacy Center for Long-Term Care who has worked on Marco's case. "It means that he might not receive assistance getting up in the morning, or going to doctors' appointments, or going to an activity that's been planned. It means almost every detail of his day-to-day life is negatively affected by the shortage of staffing."

Earlier this month Renada, Marco's primary personal-care attendant, walked out after a dispute over how many hours of work she'd be paid for. (Marco is entitled to 12 hours of state-sponsored home care a day; he can divvy up the hours any way he chooses.) Another attendant replaced her, but Marco worries that the tenuous situation will collapse, which would force him back into the hospital. According to police records, since moving into the apartment in 1998, Marco has sought assistance from officers on more than 100 occasions, usually for health problems.

Some handicapped people have enough money to purchase immunity from the inadequacies of the publicly funded support system. They can hire and pay their own attendants, purchase customized, wheelchair-friendly vans. Most people with spinal-cord injuries, laid economically low by overwhelming medical bills, have to grit their teeth and endure the daily degradations. And then there are the ones like Marco, who become embittered and lash out in anger.

Four years ago when Marco was marooned in a Chicago nursing home, he assaulted a nurse. The way he tells the tale, he was provoked into taking drastic measures when the medical staff refused to provide him with sufficient pain medication. "I'm sweating, I'm pale, I'm shivering," he recalls. "I'm having withdrawal." He managed to persuade a sympathetic health aide to put a can of shaving cream inside a pillowcase and tie it to his arm, and went in search of the nursing supervisor. When she refused to up his dosage, he pressed the issue. "She said, 'Hey, it's not my problem, I'm off in five minutes.' I said, 'I'm gonna ask you one more time. You see I'm sick. It's obvious that I'm sweating. Call the doctor.'" When the nurse again refused to help, Marco says, he cracked her over the head with the can of shaving cream. "She looked at me for a second, and I said, 'How does pain feel?' And I just watched her knees buckle and she hit the ground. They took her out in an ambulance. She needed stitches in her head."

Marco recounts the incident in a relentless monotone, as if he were enumerating items on a menu. He says the police were called but no charges were pressed. Instead, the episode marked his first stay in a psychiatric ward.

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."

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.")

Cherryl and Marco are united in their hatred of the Yankees. But in a momentary mental lapse Cherryl begins cheering on New York's pitcher, Denny Neagle. "Denny? Denny? Denny's the Yankees' pitcher!" Marco chides. "Can't you see?" He pauses: "That's a joke. "That's got to be hard," he says awhile later. "She's never seen a baseball game. Cherryl, I wouldn't trade you for nothing."

"You'd adjust," she replies. "You're a survivor like me."

Despite the baseball and the banter, Marco's mind is never far from the realities of his life. He is flipping through a catalog of social-service providers, searching for a place that might be able to help him out with a pair of boots and a winter jacket. By the time Renada arrives, it's nearly time for Marco to begin his preparations for bed.

As in the morning, he guides his wheelchair down the hall and positions himself next to the bed. He lodges the board underneath him and slides onto the mattress, grunting with the effort. Renada tugs off his pants and shirt, replaces the smaller urine bag with the overnight one. "It's such a simple thing, but if nobody does that for me I'm in trouble," Marco says.

The nightly ritual isn't nearly as laborious as the morning one, but it's just as essential. After Renada wrestles a pair of pajama bottoms and a zip-up sweatshirt onto his body, Marco returns to the living room and begins lifting weights.

Before his accident, Marco was able to bench-press 400 pounds and squat more than 500. Now he takes a four-pound dumbbell in his left hand and lifts it from the base of his neck until his arm is extended straight up in the air. He repeats the motion again and again, until his face clenches and his arm quivers with the strain. Finally he lowers his arm and drops the weight to the floor. "That's it," he mutters. "Enough. Enough."

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