The Stones Applaud -- But I Don't

If you're the parent of a little kid with cystic fibrosis -- and I am -- you can't help but root around for stories of how people have confronted this miserable, life-threatening chronic illness, and when you read those stories you cannot help but feel grateful and inspired. Today the life expectancy of someone with CF is approaching 40 years -- whereas, had I been born with the disease, back in 1958, chances are I would not have survived long enough to see kindergarten. My beautiful little kid with CF is going to outlive me by many, many years -- and, make no mistake, this will happen in no small part because generations of families who came before us endured heartbreak and agony that we will be spared.


One such family is that of Ed and Patricia Mullin -- who lost not one but two daughters to cystic fibrosis. The elder of their two CF offspring, Teresa Ann Mullin, died in 1991 at the sorrowfully young age of 22. But Teresa was a persistent young woman, and an articulate one. Not content merely to struggle against the ravages of CF, Teresa managed to get herself into -- and out of, as in 'graduate from' -- not one but two very prestigious and competitive academic citadels: Phillips Exeter Academy and Harvard. It was while Teresa was studying in Cambridge, and beginning a career in journalism, that she got the idea of writing her autobiography, The Stones Applaud.


Teresa's parents are likewise remarkably persistent folks, and so they soldiered for 16 years to get The Stones Applaud published. Finally, Providence House Publishers, a speciality publishing house in Tennessee whose web site makes clear its overtly Christian purposes, brought out Teresa's autobiography last year.


It is my regretful and reluctantly stated opinion that Mr. and Mrs. Mullin have done the memory of their beautiful daughter -- both of their beautiful daughters, in fact -- a disservice by publishing The Stones Applaud so many years after Teresa's death, at least in the form in which it has appeared.

The world of cystic fibrosis has experienced a sea change since Teresa graduated from Harvard in 1990. Virtually every word of her autobiography is seriously out of date, and for anyone to conclude that what happened to Teresa Mullin is anything like what happens to a CF child today is to be profoundly misled. And yet, The Stones Applaud makes only one tiny reference, in a terribly inconspicuous place, to this important reality. Specifically, on the back of the title page -- you know the place, it's where they put the ISBN number and other publishers' minutia that only librarians and booksellers read -- the Mullin family makes the following deliberately understated disclosure:

In the years since Teresa penned The Stones Applaud, medical treatments and knowledge of cystic fibrosis have changed, so some of the things she experienced are no longer part of the lives of those with the disease today. This is the story as she lived it and her personal perspectives of life with cystic fibrosis; while it is factual, some of the names of individuals have been changed.


As you read through The Stones Applaud, it seems like every other minute she is checking into some hospital somewhere for an extended stay, at which she does stuff with the blessing of her caregivers that medicine now knows is dangerous for a cystic fibrosis patient. She is constantly frolicking with fellow CF patients, and the sad truth is that this probably contributed to her premature death. What kills CF people, by and large, is the effect of opportunistic bacteria to which non-CF folks are impervious -- bacteria that CF patients can and do spread to one another if, say, they hang out together in close quarters when not feeling well. And hanging out with other CFers in close quarters while not feeling well is a fair summary of each and every hospital stay Teresa Ann Mullin experienced.


The other seriously misleading aspect of this book is more subtle in character.

Before Teresa packs off to New England for prep school, she suffers under the care of a pulmonologist in Pennsylvania whose approach to CF care, at least as described in the book, can be summarized by calling her an egotistic disciplinarian. This physician keeps Teresa out of grade school for the better part of two academic years, until the family travels to Boston on other business and Teresa is checked out by the renowned Dr. Harry Shwachman.

Dr. Shwachman immediately promises his new patient a better life and introduces her to the notion that CF is best confronted, by both its caregivers and its patients, with creativity and passion. "Shwachman taught me to nurture a curiosity toward medical matters," writes Teresa. "At first I felt burdened with any new information . . . . But Shwachman helped me see that I needed to rely on my own knowledge and good judgment if I hoped to gain any measure of independence."

This is a key insight. But what Teresa didn't write, and what her parents failed to disclose, is that the story of CF is replete with doctors like Harry Shwachman -- from Dr. Dorothy Anderson, the chain-smoking pathologist at Columbia Medical School who first identified the disease in 1938, to Dr. Warren Warwick of the University of Minnesota, whose restless and daredevil take on the disease has not only endeared him to zillions of CF patients but has served as a much-heralded example of how healthcare in general ought to be approached. Dr. Atul Gawande, the surgeon and author, made Dr. Warwick a central character in "The Bell Curve," his 2004 New Yorker article about rebelling against medical mediocrity. In slightly altered form, this account now appears as a chapter in Gawande's 2007 book Better: A Surgeon's Notes on Performance.


If you care about CF, put down The Stones Applaud and read Gawande's book. Then scrounge around for a copy of Cystic Fibrosis in the 20th Century, edited by Dr. Carl Doershuk and published in 2001. There you can read about CF hero after CF hero -- like Dr. Paul di Sant'Agnese, the guy who figured out (during a New York City heat wave in 1952, before everyone had air conditioning) that CF could be diagnosed by measuring salt content in sweat, or Dr. LeRoy Matthews, who pioneered the physical therapy that has prolonged the life of so many CF patients, or Dr. Philip Farrell, who has successfully championed the absolute necessity of screening babies at birth for CF. (It is worth noting that Teresa Mullin was not diagnosed with CF until she was four years old, and thus she lost four critical years of treatment. This surely contributed to her death in early adulthood.) Yes, Dr. Shwachman is in there too -- my point is that he was not really unique but part of a proud tradition, one that continues to spread.


Why has it spread? Because the Cystic Fibrosis Foundation, under the leadership of some other CF heroes -- Dr. Robert Beall, the Foundation's president; Dr. Preston Campbell, the Foundation's medical director; Dr. Bruce Marshall, the Foundation's director of clinical affairs; and Leslie Hazle, R.N., the Foundation's director of patient education -- has become a tireless champion of what is known in medicine generally as "patient- and family-centered care." This is simply the radical notion that the real experts on CF (or any other condition requiring medical care) are the people who live with it. In practical terms, such an approach to CF means rejecting the very kind of assembly-line, authoritarian care that Teresa Mullin so forcefully condemns in The Stones Applaud.


What an honor to her memory it would be for her family to claim, rightfully, a sliver of credit for helping to move things in that direction. Instead, they simply allow their late daughter to perpetuate, inadvertently, an untruth, ironically by attributing an outdated sentiment to the late Dr. Shwachman. "Though he'd helped found the National Cystic Fibrosis Research Foundation in 1955," Teresa wrote in 1990, "he often talked about how the modern Cystic Fibrosis Foundation had become a politicized big business he no longer recognized."


He would not recognize it today. If you care about curing cystic fibrosis, you should write the Foundation a check.

There is one CF hero, other than Dr. Schwachman, that Teresa recognizes in her book -- but she damns him with faint praise indeed. No human being on Planet Earth has worked more assiduously to reduce CF to a curious medical footnote than sportswriter, novelist and NPR Morning Edition personality Frank Deford. Deford's book Alex: The Life of a Child, about his daughter's death from CF in 1980 at the agonizingly young age of eight, is powerful enought to stand on its own as compelling first-person literature that even people indifferent to CF ought to read. Here's what Teresa Mullin had to say about the work of her fellow CF author:


Although my family and I have great respect for Deford and the work he has done to teach the public about cystic fibrosis, I felt alienated by a book that focused more on Alex's death than her life. Instead of celebrating the short life of a fighter and calling for stepped-up medical progress, Deford cloaked Alex's story with a father's grief.


After you've put down Teresa Mullin's book, after you have read Atul Gawande's book, and after you have read Carl Doershuk's book, go see for yourself whether Frank Deford did nothing but wallow in a father's understandably boundless grief. As a CF dad myself, my favorite part of Deford's book is his list of "four basic things you must understand" about hospitals. One, two and four are, respectively, that you need to know your social security number, that the billing department will screw up but blame you, and that the elevators take forever. No. 3 deserves quotation verbatim:


You have to use one word all the time. That word is "why?" No matter what anybody in a hospital tells you -- and especially if it involves your child -- ask them why. Most doctors have a good bedside manner, but then, they're the bosses. When you confront them, especially standing up, eye to eye, they are not all that commanding; they are not any good at dissembling then, or even hedging. Very few people dare to ask doctors why. You'd be surprised; most always you can tell when a doctor is gilding the lily, or plain just doesn't know. Even Alex could spot the phonies by the time she was only six or seven. So ask why, and if that doesn't obtain satisfaction, ask why again. You will never regret it.


I've lived by those words ever since I read them. Surely they resonate fully with what Teresa Mullin was trying to say -- or thought she was trying to say. And maybe it's because she criticized a fellow CF author so unfairly that I feel comfortable about saying that, even though she died so sadly, I wish Teresa Mullin's book were not in circulation.


Teresa Mullin was not beneath using her chronic illness to help her get admitted to ultra-competitive schools like Exeter and Harvard. She didn't shrink from the fame and attention one gets by literally becoming a poster child for her disease. She didn't mind getting to meet celebrities like Susan Lucci (the seemingly ageless Erica Kane from the soap opera All My Children) or Joan Rivers. She apparently never had to worry about who was paying for all those hospital stays -- or, for that matter, who was paying for Exeter and Harvard. Her promoters today hail her as a young woman of insight and wisdom. And, yet, she manages to write this, in one of her concluding paragraphs:

We will not live in a civilized society until we tend to the disenfranchised among us. In this time when women, people of color, the gay and lesbian community, and the disabled all continue to struggle for basic civil rights, there is another, uncounted minority. The chronically ill, especially those of us with life-threatening illnesses, have spent too many years on the fringes of American society. No matter how content we have been in our own lives, almost all of us in this country have grown up shunned and discouraged. The enlightened among us have learned to hate the word "concern" as a euphemism for discrimination.


Teresa, I respectfully disagree. CF is awful, but it also happens to be, by and large, a disease of white people. Compared to people with other diseases, CF patients have good access to health care, and they have a well-endowed and persuasive foundation that is working day and night, and paying pharmaceutical companies tons of money to work day and night, to cure the disease. They will succeed. Meanwhile, it's hard to think of someone who studied at one of the nation's most elite prep schools, and then went on to study at America's most elite university, as among the "shunned and discouraged." You just died too young, and I mourn your loss. But I still didn't like your book.


[Pictured at the beginning of this post: My daughter using The Vest, a physical therapy device invented by Dr. Warren Warwick. I got to meet Dr. Warwick in 2005. It was like meeting Elvis.]