Illinois man paralyzed in HS football tries to survive without health insurance

From The Huffington Post in Chicago:

ROBBINS, Ill. -- Rocky Clark sometimes dreams he's running track, racing around the oval as he once did, his heart pumping fast and his long legs a blur as he crossed the finish line.

Just thinking about it makes him smile.

Some nights, though, he has another recurring dream, this one pure fantasy. He sees himself in white shorts and track shoes, running again, then stopping, kneeling in prayer before a church door, somehow unable to make it inside.

When he awakens, Rocky Clark inhabits a world largely confined to four walls. Surrounding him are glass-encased autographed footballs and cherished memories of his glory days: Blue-and-gold ribbons. Trophies. And giant varsity letters from Eisenhower High School, his alma mater.

Clark can do little but swivel his head. He can't move his arms or legs. More than a decade ago, he was paralyzed from the neck down after being tackled in a high school football game. After nine months in rehab and a hospital bill approaching $1 million, he went home.

As a quadriplegic, his long-term prospects were slim. And over the years, there have been regular hospital stays and health scares – no surprise, considering Clark's fragile condition. He has just one working lung. His right lung is partially paralyzed; certain infections could kill him.

And yet Clark has endured. His doctor credits top-notch, round-the-clock home health care paid for by the school district's $5 million catastrophic health insurance policy. But that's run out, so the nurses and money are gone, replaced by his mother, growing financial pressures and a new sense of foreboding.

Rasul "Rocky" Clark beat the odds. And now he wonders if he's paying a price for his survival.

A week before his injury, Rocky Clark vowed to his mother that he'd strike it rich as an athlete one day and buy her a house.

Annette Clark remembers her son as an acrobatic kid who mastered back flips at age 7, ran too fast for a spanking and was always throwing balls and rocks – the inspiration of his nickname, bestowed upon him by an uncle. He took up track, football and baseball and excelled at all three, collecting ribbons, trophies and medals.

"I love awards," he now says. "It's a need thing."

On a warm September night in 2000 just four plays into the game, Clark – a high school junior and running back for Eisenhower's Cardinals – was grabbed by the shoulder and tackled. His head hit the ground. At first, he recalls, there was silence.

"When I started coming around, I heard a bunch of ringing," he says. "My whole body was vibrating, like a spring. I felt cold air. I tried to get up, but I couldn't."

Clark's neck had been broken in two places.

He spent about nine months at the Rehabilitation Institute of Chicago, wondering if his injury was some sort of cruel payback for something he had done in his 16 years.

"I said to myself ... `Maybe there was something I said I shouldn't have said. Maybe there was something I did that I shouldn't have done,'" he recalls. "I didn't do anybody wrong. I didn't get in trouble. ... I prayed every day. I didn't go to church all the time ... but I was good."

"Then," he says, pausing for a breath, "I realized things happen. Life doesn't always give us what we expect. I've got a spinal-cord injury, but there's nothing wrong with my brain. I've got a strong spirit and courage. You've just got to learn to deal with it."

Clark finished high school, donning cap and gown and having a friend wheel him across the stage so he could accept his diploma. He took some college courses, but a full-time schedule proved too difficult. (He'd like to return, but can't afford it.) He became a volunteer coach at Eisenhower, attending games.

All of it was made possible by the care provided through the district's insurance policy. And Clark says when the $5 million policy ran out several months ago, he assumed it would be renewed.

But it was not.

"A limit on life? That's crazy," Clark says, his pencil-thin frame covered by a white sheet. "I thought I'd be being taken care of the rest of my life."

His mother, Annette, who filed for bankruptcy because of financial problems, says they feel abandoned by the school. "They have a moral responsibility to take care of him," she says. "It depresses me and makes me angry. My son deserves better."

But the school district says both its new insurer and the one that held the $5 million policy refused its requests to obtain a new policy for Clark. "No one is going to sell us insurance for Rocky," says John Byrne, the school superintendent. "I feel kind of helpless."

Rocky Clark's injury is unusual, but his predicament is not.

A 2009 study estimated that 20,000 to 25,000 people in the U.S. reached the limits of their catastrophic health insurance. Many find themselves in dire straits – critically ill, facing crushing medical bills, struggling to remain in their homes, according to the state insurance commissioner.

"They're facing unenviable decisions that balance life, death, financial security and poverty – meaning the choice they make is a choice no person ever wants to make,'" says Michael McRaith, director of the Illinois Department of Insurance.

Annual limits are being phased out and lifetime caps ended last September as part of the new health reform law, so the ranks of those exhausting their policies will drop sharply over the coming years, and will totally be eliminated by 2014, McRaith says.

That doesn't help Clark, whose insurance has been so critical, according to Dr. Charles Beck, who has cared for him the past eight years. He wrote a letter to the school and insurance company, claiming "the loss of these benefits eventually is going to lead to his demise."

In recent weeks, Clark's mother, along with an array of supporters – some new, others longtime boosters – have drummed up attention with news stories, fundraisers, a letter-writing campaign to the school and two new websites. Their theory is simple: If they can keep his cause alive, they can keep him alive.

Denise King, whose husband is an associate pastor at a church in Chicago's Loop, knew about Clark and when she heard of his latest troubles, she couldn't sleep. "I thought this must be God telling me to do something," she says. The church hosted a small fundraiser in May.

This spotlight has helped: Dozens of people have donated money, supplies, even a water cooler.

They join others, notably the Chicago Bears, who've been generous supporters over the years, donating, among other things, more than $100,000 to make the Clark house in this southern Chicago suburb wheelchair accessible, according to Don Grossnickle, a deacon who heads Gridiron Alliance. The group helps disabled high school football players in the state and tries to draw attention to safety issues.

Clark's chances of surviving a decade or more were only about 10 percent, according to Beck. He credits Annette Clark – who receives government aid as a caregiver – and top-flight nurses with doing "an absolutely remarkable job," of protecting him from potentially fatal infections and illnesses.

He also praises the resilience of mother and son: "They don't fold," Beck says.

But Beck believes that Medicaid and other state support Clark now relies on aren't enough to provide the necessary supplies, medicine, breathing equipment and 24-hour specialized care. And moving him, Beck says, isn't a good option.

"If he had been living in a nursing home, he would have been dead five years ago," Beck says, and if he's sent to one now, "I would say goodbye to him. He would go to God. ... He requires more care than any nursing facility I am familiar with."

Insurance is a business, and Beck says he knows that. But he also believes that defying medical expectations has somehow become almost a punishment.

"It's confusing to me why their responsibility ends when that $5 million is gone ...," he says. "If he happened to outlive the actual projection ... does he suffer now because his care was good enough ... and he was lucky enough? I don't understand it."

At 27, the sculpted biceps that once filled the No. 21 red-and-white jersey have long since withered beneath a husk of skin and bones.

As Clark has grown from teen to a man, he's learned to adjust to a life where someone else has to brush his teeth or scratch an itch.

He misses using his hands: He liked to sketch as a teen – his walls are adorned with pencil drawings of people and dogs that show raw promise. And he wonders how far he could have gone as an athlete. "To have so much talent and never reach my full potential ...," he says, his raspy voice trailing off in a whisper.

But Clark tries to focus on what he has, not what he's lost. An iron will. Drive. And pride. "People tell me how inspirational I am," he says. "I've always been a motivator."

He relies on faith, too: "I leave it in God's hands." And he says it's pointless to be bitter.

"There's always someone who's got it worse than you," he says. And yet, he adds: "There are people who are not in my situation and they take life for granted. They have no determination. They don't know things can take a turn for the worse in the blink of an eye."

Annette Clark is her son's constant companion. She feeds him, washes him and sleeps on a recliner in the living room so she can hear him when he wakes at night. It's a punishing pace.

"Eventually, she'll break down," Beck says. "She has no ability to get a night's sleep. It's just a matter of time."

There's also sadness in her routine.

"It hurts for me to see him go down from muscle to nothing," she says. "It hurts for me when I have to turn him. It really hurts my heart. ... I have moments when I feel like throwing my hands up. I want to ask why. ... I have my moments when I want to run away."

Instead, she soldiers on.

From mid-April through early May, Rocky Clark was hospitalized with a blood clot in his paralyzed right lung.

The morning after he was admitted, at 1 a.m., Annette Clark says her son looked at her and declared: "`I'm tired of being sick.'"

"What are you telling me?" she asked. Then, sensing he might be giving up, she warned: "Don't say that to me anymore."

She walked out into the hall and cried.

When she returned, he was asleep, and she wiped a tear running down his face.