Monday, September 27, 2010

Former football player continues to push for paralysis research

From USA Today:

MIAMI — Marc Buoniconti (pictured) never sits in his dreams. He runs at top speed instead. Or he plays football. Or makes love.

"Sometimes I wake up and think, 'That was awesome, man, I was running all night,' " Buoniconti says. "It does not make up for reality, obviously; it's just a glimpse. You know how dreams are — sporadic, but still pretty neat to have."

Buoniconti, 43, says this from his mechanized wheelchair in the living room of his high-rise condo with its commanding views of Biscayne Bay and the Miami skyline. A smile plays across his still-boyish face at the thought of all that glorious, dreamy mobility.

Next month it will be 25 years since Buoniconti slumped to the turf as he made a tackle for The Citadel in an otherwise unremarkable college football game. He was rendered a quadriplegic at that ghastly moment, never again to move his arms or legs on his own.

His father, Nick, 69, a Hall of Fame linebacker who played for the Boston Patriots and starred on the famed 1972 Miami Dolphins team that went 17-0, refused from the outset to see quadriplegia as a life sentence. Father and son soon became animating forces for the University of Miami's fledgling Miami Project to Cure Paralysis.

Scientists snickered at the audacity. Cure paralysis? Might as well try to cure death. But Nick leveraged his fame and his connections and Marc his never-give-up story of hope, and together they've raised roughly $350 million for the Buoniconti Fund, the fundraising arm of the Miami Project.

Monday they hope to raise $7 million more at the 25th Great Sports Legends dinner in New York, which will feature an array of stars from Willie Mays and Annika Sorenstam to Bill Russell and Bob Costas. There is a level on which the biggest star in the Waldorf-Astoria ballroom each year is Marc himself, no longer a mere mascot or poster child.

"He's changed his role from someone who was a symbol to someone who was a spokesman to someone who sits in on our scientific meetings," says neurosurgeon Barth Green, Miami Project chairman. "We wouldn't be here without him."

Green expects real breakthroughs in coming years. "We expect to be doing FDA-approved clinical trials on injecting Schwann cells into people's spinal cords" next year, he says.

Schwann cells, in oversimplified terms, are sheathes that wrap and support neurons — sort of the glue of the peripheral nervous system.

Miami Project scientists plan to use patients' own Schwann cells to promote nerve growth in damaged spinal cords, a procedure that shows promise in lab animals.

"When I say cure, it's relative," Green says. "For Marc it might be the ability to scratch his nose for the first time in 25 years."

Green says the typical lifespan for someone with an injury of that severity was only a few years in 1985. Now, thanks to medical advances and top care, Buoniconti has a normal life expectancy.

"Twenty-five years?" says his mother, Terry, 70. "I didn't think he'd make it 25 days."

Buoniconti's injury made national news at the time, partly because he was the son of a famous athlete but also because of the questions it raised about playing football safely.

Buoniconti sued The Citadel for $16 million, claiming he should not have been allowed to play because he missed practice that week with a neck injury. He settled for $800,000, but not before attorneys on both sides said harsh things. Buoniconti and The Citadel were estranged for more than 20 years. They made up in 2006 — and in May, Buoniconti received an honorary degree of Doctor of Public Service.

Forgiveness gives him peace. "The older I get," he says, his voice raspy but strong, "the more I want to rid my mind of anything negative."

Buoniconti remembers the last moments of his ambulatory life:

The Mini-Dome in Johnson City, Tenn. … Third-and-1 for East Tennessee State. … Buoniconti lunges at tailback Herman Jacobs. … His helmet collides with Jacobs' lower back. … And then — .

Nothing. Buoniconti recalls seeing an arm at an odd angle in the pileup. Whose? In the flash of an instant he recognized the terrible truth. That arm he couldn't feel was his.

Paralyzed is the title of the book he's writing, due out next year. In it, Buoniconti tells how he turned blue and nearly died on that field. An ambulance took him to the hospital. His parents, not at the game, learned by phone and rushed to his bedside.

"There he was, heavily sedated, with tubes in his nose and throat," his father says. "He couldn't speak. I bent over to give him a kiss and looked into his big, brown eyes and I could read in them: 'Daddy, please help me.' "

The retired Dolphins star resolved then to work for a cure that doctors told him wasn't possible. "As a father," he says, "you want to change those odds."

The tube in Marc's throat was a breathing machine that saved his life. And he hated it.

"Living life on a ventilator is hell," he says. "I didn't take any visitors for a month. I didn't wash my face. I didn't eat. I lost 100 pounds."

It took seven months to wean Buoniconti. "They turn that air down, man," he says, "and make that body fight for that breath." He sank into depression.

"I went through those classic stages," he says. "You go through the denial, you go through the anger, you go through depression. There's one at the end, they say 'acceptance' — you accept your situation, and it helps you deal with it and move forward.

"And I always hated that word. To me, it's defeatist in a way. I'll never accept this injury. I think as soon as you accept something like that you've lost."

The Miami Project reflects that refusal to accept the unacceptable. Buoniconti was moved to the University of Miami Hospital days after his accident.

There, he and his father met Green. The three of them would become co-founders of the Miami Project. Today the younger Buoniconti is its president and he knows just about everyone on its staff of more than 250 scientists, researchers, clinicians and support staff.

"I think of myself as having two lives," Buoniconti says. "The life I had on my feet before my injury; this second life that I have right now. … What I'm hoping for is really a third life that blends the first two. … A third life, for me, would be a cure.

"That's the spirit of the project: Never, never, never give up. We have too much to lose. We're fighting for so much. We're fighting for so many."

He means not only those who sustain one of the 12,000 new spinal cord injuries of varying severity in the USA each year, but also millions more around the world who suffer from other neurodegenerative disorders such as traumatic brain injuries, ALS, stroke, Parkinson's and multiple sclerosis.

Buoniconti rises each day at about 8 a.m. — "I don't want to interrupt any of my nice dreams" — and it takes his male nurses three hours or more to prepare him for the day. Catheterize. Take a shower. Stretch his limbs. Physical therapy. Check vital signs and blood pressure. Take medications.

"If I'm lucky," he says, "I'm in the chair by 11 or 12. And then I go face the day."

Buoniconti was a wild child growing up, with bad grades in class and worse marks for deportment.

"I think my books stayed in my trunk my entire junior and senior years" of high school, he says. "I just concentrated on football and girls."

That didn't change much at The Citadel. He jokes now that the honorary doctorate is great because he didn't have to study for it.

After his injury Buoniconti realized he would have to rely on his brain. He enrolled at Miami and made the dean's list as he studied post-traumatic depression and earned a degree in psychology.

"That's really where I learned a lot about myself," he says. He also learned about the science of dreams. Mostly he dreams the way anyone else does, he says, but on rare occasions he has "lucid dreams," a phenomenon in which the dreamer is aware he is dreaming.

He compares the vividness of lucid dreams to the scene in Avatar in which Jake Sully, the paraplegic ex-Marine, gets up and runs when his mind is linked to an avatar body.

"He was squeezing sand between his toes," Buoniconti says. "Sometimes lucid dreams are like that. That part of the movie really hit home to me."

Buoniconti declines at first to say what happens in these dreams, though he has nearly total recall of them. At last he relents and offers a rare, raw peek.

"You have free rein to do whatever you want and there are no consequences," he says. "So I've done just about everything in lucid dreams.

"I've killed people. I've jumped off buildings. Just about everything you can think of — wild, crazy things, because I could."

Buoniconti says he can control what he does in these dreams but not the settings in which they occur. And these settings, he says, often are violently dangerous, leaving him to fight his way out of them.

"Maybe I don't show a lot of anger or resentment in my waking life but there's probably a lot in my subconscious," he says. "Maybe some rage, down in deep — those dreams are where I'm trying to let it out. That's OK. Better a little rage and running around than not at all."

Lucid dreams come only a few times a year. His other dreams are often pleasant. Sometimes he dreams of sexual experiences.

"They're great," he says, grinning. "And if they're not great, who cares?"

Buoniconti motors into the lobby of the Miami Project in his breath-controlled wheelchair. He spots a young woman he doesn't know and quickly strikes up a conversation.

"I have the Buoniconti curse," he says later. "We love women. We're just always attracted to them. That's OK. All I was doing was being nice."

He spends a good deal of time with Cynthia Halelamien, whom he describes as "a special friend." This night she feeds him during dinner at his condo, alternating forkfuls of marinated swordfish between his mouth and hers.

Such chores typically are left to Buoniconti's round-the-clock nursing help; he says his medical bills come to $500,000 to $600,000 a year, paid for by the catastrophic insurance policy his father held when he was president of U.S. Tobacco.

Buoniconti lives with Smokey, a roly-poly Ragdoll cat who greets him at the elevator that opens directly into his condo. His mother lives a few floors above. (His parents divorced in 1997.) She joins him for dinner most Mondays; they watch Dancing With the Stars instead of Monday Night Football.

"Well, for an hour, maybe," Buoniconti says, "if she's cooking."

He still watches a great deal of football, especially the Dolphins, his father's former team, and the University of Miami, where he is a trustee.

Sometimes his dreams are of playing football for The Citadel, as he once did, or for the Dolphins, as he never could. He thinks, even at 5-11, 220 pounds, he might have played in the NFL.

"Maybe I'm not Ray Lewis," he says, "but I think I would have had what it took to be a special-teams leader. Deep inside, I would have loved to have had a shot. If not in this life, then at least in my dreams."

Buoniconti was a kid of 19 when his spinal cord snapped. Next week he will be 44. He sees the 25th anniversary of his injury as reason to celebrate: His disability offers him a chance to change the world.

Don't get him wrong. He would take away his injury if he could. But that's not worth thinking about, he says, because he can't change history.

He can only make some.

"That's what I love about being who I am. I try to help humanity. It's a great position to be in. I'm lucky. I'm really lucky when it comes to that."