I took Dad to the dentist today and the latest issue of Sports Illustrated was on top of all the other magazines with a cover story about quadriplegic ex-football player Marc Buoniconti, so I eagerly picked it up to read the story. What a contrast between Buoniconti’s story and that of the Australian former athlete and economist, Christian Rossiter, who is now imprisoned in a nursing home for the crime of needing too much assistance with activities of daily living* and assistive devices to lead a rewarding life and has just won the right to refuse nutrition and fluids through his feeding tube — supposedly because of his unfixable quadriplegia but more likely because he is dying of boredom THAT IS READILY FIXABLE!
Once he wakes in the expansive South Miami high-rise apartment where he has never taken a step, Marc Buoniconti, 42, calls into a nearby speaker to the full-time nurse. Some days it’s Lance, some days Peter, some days Mike or Martin. Within seconds the man appears, places pills in Buoniconti’s mouth, pours medicine down his throat and inserts a catheter into his penis to drain the urine. After removing the catheter he unrolls onto Buoniconti’s penis a condom that is connected to a plastic bag strapped to one leg. He checks Buoniconti’s vital signs, stretches his limp arms and legs and examines him for skin lesions or swelling or redness. He pounds Buoniconti’s chest to clear his lungs. If Buoniconti is due for a bowel routine, he places suppositories in his rectum. Then he picks Buoniconti up, places him in a waterproof wheelchair and guides him to the shower.
Sometimes it’s three hours before Buoniconti is fully dressed. Still, he is far better off than most quadriplegics. That he has survived nearly 24 years in this state is testament to his deep reservoirs of patience and grit, not to mention the power of money. Much of Buoniconti’s $500,000 annual nursing bill, as well as the cost of his $60,000 customized van and $24,000 electronic wheelchair, is covered by the health-care package that his father, Dolphins Hall of Fame linebacker Nick Buoniconti, received during his post-NFL days as president of U.S. Tobacco.
“My dad did well for himself, but if we didn’t have the insurance I have, we’d be broke trying to take care of me,” Marc says. “No—I’d probably be dead.”
It does not cost this much to give every quadriplegic an active and meaningful life. Buoniconti’s family is prosperous and the American can-do spirit has created a system where indoor and outdoor environments are wheelchair-accessible and assistive devices have been invented and made available in the market to allow a quadriplegic to have a useful and rewarding life.
I really recommend reading the whole story. But, even allowing that Buoniconti is in a rare situation because he has family money, influence and support to empower him, when we think of healthcare systems that abandon quadriplegics and create the conditions in which almost anyone would want to die, like Charles Krauthammer, he represents what is possible to accomplish, when properly empowered, even with quadriplegia:
The iPhone rings beneath his fingers. Peter hustles over, holds the phone up to show who’s calling, pushes the button and stands there, arm extended, as Buoniconti speaks. He gets calls all day—from family members, buddies, staffers at the Miami Project to Cure Paralysis—and answers in a voice that ranges from near whisper to brassy baritone as he takes the shallow breaths afforded by a diaphragm operating at 30%. Afternoons he spends at the Miami Project, a few Dan Marino bombs from where the Orange Bowl used to be. In January 2008, Buoniconti became president of the 23-year-old organization, making official what had been clear for years: He is the project, the animating force behind the 250-person staff; the decade-old, $40 million research center; the mind-boggling $300 million that has been raised for research by the Buoniconti Fund.
University of Miami surgeon Barth Green, the project’s cofounder and chairman, had been rejected for an NIH grant two months before The Citadel played in Johnson City in 1985. But in Buoniconti, the cause suddenly had a stirring story to tell, complete with a famous dad who could tap all his moneyed contacts in sports and the media. Nick [Mark’s father]raised $2 million the first year alone, and once his 20-year-old son left the hospital, once Marc appeared at halftime of a Dolphins-Jets game before 80,000 standing fans, the cause had its irresistible face, young and tragic and disarmingly upbeat. Marc Buoniconti—an incorrigible flirt with pretension-puncturing wit and a knack for charming everyone from kids to civic leaders—could get jocks, entertainers and business types to write checks like no one in a lab coat ever dreamed of.
Without Marc? The Miami Project, Green says, would still be a small-scale research center incapable of assembling the team that pioneered its hypothermia treatment, which helped Bills tight end Kevin Everett to walk again after a helmet-first hit in 2007 dislocated the same two cervical vertebrae that Buoniconti broke. Without Marc, Green and his team probably would not be poised to begin, pending FDA approval, the first testing regime for the effectiveness of Schwann cell transplants on human subjects—a regime already proved to restore 70% of spinal-cord function in lab animals.
“Every hospital in the world and paramedics are using hypothermia for cardiac arrest, in cardiac and vascular surgery, and in the future they’ll be using it for brain injury and spinal-cord injury and stroke,” Green says. “Even though we haven’t cured paralysis, we’ve done a lot to change the practice of medicine. Physical therapists are using electrical stimulation because the Miami Project proved [its effectiveness] scientifically. Doctors in operating rooms all over the world are checking patients’ brains and spinal cords because the Miami Project got monitors approved by the FDA. We’re making babies from paraplegics and quadriplegics because we changed a research project into a clinical practice. We’ve made some good contributions to the quality of life for people who are and aren’t paralyzed.
“Marc was the catalyst. And Marc is truly the president: He makes the policies, he’s the speechmaker—a much better talker than his old man and me put together. Used to be, I didn’t want to follow Nick on the stage. Now I don’t want to follow Marc.”
The ingredients that make people want to live are loving and being loved, feeling needed and having a place in the world, and having power to fulfill your desires — by which I mean the basic ones: the kind of care you want, the foods you enjoy, the clothes you prefer, the music and books and TV shows you like. Quadriplegia may not be fixable. But there IS a marketplace where the ingredients for the will to live are readily available. And the recipe for the will to live is VERY fixable.
* “Activities of daily living,” or ADLs, is a term that is defined in medicine and law as the basic activities a person must be able to do in order to live without the assistance of anyone else: ambulate, get to the toilet, bathe, brush teeth, brush hair, shave, put on make-up, dress and undress, cook and clean house, to mention several.