Sick and Tired

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

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.

James Jukes

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.

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