Monday, April 19, 2004

Rosemary Quigley - a tough one to kill

Update 9/9/04: Rosemary Quigley passed away on Monday, 9/6. I wrote about this here. A vigil is being held Friday, 9/10, and funeral and burial are Saturday, 9/11 at 10am at St. Elizabeth’s in Acton. -Rick

I just had the wind knocked out of me, and I feel blessed. (The appropriateness of the metaphor will be obvious in a sec.)

A month ago, while returning from boys only breakfast with my sons, I had NPR on the radio and heard this report about genetic testing. As they recounted the experiences of a couple who decided not to test their baby for evidence of cystic fibrosis, my mind wandered to two people: Andy Winders and Rosemary Quigley.

Andy was a year behind me in high school. A CF patient, Andy was told that daily exercise (without any exceptions) would greatly increase his chances of living a full life (relatively speaking; the expected lifespan for CF patients is 33 years.

So Andy became a basketball player. Every day, often for hours, Andy played hoops. As you would expect, after a dozen years of playing 365 days a year, several hours a day, Andy got good. So good, in fact, that he led his team (a bunch of white kids from the burbs with not a single one over 6’4”) to the state semi-finals. He played his final game on the fabled parquet floor at Boston Garden (the real one, not the imitation Fleet Center), where he scored his team’s final dozen points and came within one possession of beating a superior team. (With a few seconds left, the other team triple-teamed Andy, and he wasn’t able to get the ball to an open man.) Later that year, Andy’s performance was honored at a reception at the Basketball Hall of Fame, where he sat next to none other than Larry Bird.

After the game, Boston Globe sports columnist Bob Ryan was moved by one of Andy’s teammates, Rick Wurster. Rick, standing in front of a locker that had seen greats like Kareem Abdul Jabbar and Julius Earving, said simply, “I wish he could have my lungs. Think of how good he would be then.”

Andy often would be racked with coughs in between trips up the court. Yet he still managed to dominate every game he was in. (His CF was kept secret from all but teammates and friends until the playoffs that year, when the media got hold of the story.)

Amazingly enough, Andy wasn’t the only CF patient in my life. Another family who we went to church with — the Quigleys — had a daughter who was a year ahead of me. Rosemary, who would go on to Harvard and then Michigan Law and is now an assistant professor of medical ethics at Baylor College of Medicine, also had CF.

Strange that Rosemary had been in my thoughts lately — and while browsing Slate tonight, I happened to see her name in the Diary section. Two months ago, Rosemary had a double lung transplant. Her diary takes you through the remarkable journey of someone who’s both fortunate (she was on the transplant list just two weeks) and persistent. She’s aware of the challenge ahead, and appreciative of the opportunity she’s received. We’re fortunate that, as one of her doctors said, she’s a “tough one to kill”.

I haven’t spoken to Rosemary in at least five years or more — but after seeing this I’ll be dropping her a line again. I was not only excited to learn that she’s recovering, but that she’ll be getting married next month, and that her sister Anne (who also went to high school with me), just had a baby girl.

Rosemary’s account is harrowing (her condition had worsened to the point that she was hospitalized for weeks, at one point nearly unconscious) and uplifting (while acknowledging her “jampacked” 33 years of life, she writes, “it is not hard to imagine living much longer than a decade with these new lungs. I don’t mean to be greedy, but I think I’ll always want more of life”).

Continued good luck in your recovery, Rosemary, and congrats on the upcoming wedding. I can’t wait to see pictures!

CF is a scary disease that afflicts 30,000 children and adults in the U.S. There are many ways you can help — visiting the CF website for ways to give is a good start.

1 comment:

  1. Heartwarming stories and relatively rare among those with CF. If you want to really help, in addition to raising money, urge prenatal testing. Most people have no idea of the frequency of distribution of the gene, especially among white people.