Roland Merullo's Blog, page 2
November 26, 2019
Happy Thanksgiving
I have always truly loved Thanksgiving. No one is excluded from that celebration. It doesn't matter what you believe in or how many gifts you can afford. You can dress up if you want to, but you don't have to. You can watch a great parade from the comfort of your own home. Food, family, friends, gratitude — everything a holiday should be. The only thing I don't like is that, in these parts at least, Thanksgiving often signals the end of golf season and the beginning of snow season.
I'd like to share an excerpt from the greeting I wrote for the November 2016 edition of our newsletter.
Happy Thanksgiving. I send my best wishes to you all.
Roland
***
I've spent enough time in less luxurious places — the former USSR, Mexico, the islands of Micronesia — to be thankful for what I have and for what surrounds me. It's still so easy to take it all for granted, so easy to pay attention to what we don't have, what we feel we should have, but I've known enough difficulty in my life to be grateful for the small mercies, even things as basic as a mostly painless day, a good conversation, a solid night's sleep, a meal with friends.
Though not unique in this regard, the writing business is one in which it's particularly easy to place envy before gratitude. There's no empirical standard by which to measure one's ability, so it's tempting to look at other writers and think "I should have won that prize, been given that healthy advance, been praised in a review like that one."
I do what I can to keep those thoughts at bay. I'm mostly a glass-half-full kind of person anyway, and that attitude carries over into my working life. I know how lucky I've been in the writing world. Yes, I've worked hard at it for almost forty years, and yes, Amanda and I have taken and continue to take some big risks in pursuit of the artistic life, but I've been lucky. I know writers with more talent who have not had even my modest amount of success, or who've been ignored entirely by the New York book-making machine.
I have a wonderful family, decent health these days, good friends. I live in a place where — unlike so many who lived in the USSR and still live in places like it in the world - I can go to sleep at night confident that someone won't knock on my door and drag me away to be interrogated or sent to the camps; a place — unlike the outer islands of Chuuk — where, if I'm ill or injured, I know I can get medicine or see a doctor almost immediately. Except for intentional fasts, I've never been truly hungry, not for a day. My work — not without its stresses and frustrations — allows me to spend a lot of time with Amanda and the girls, to play golf or hit the gym on a weekday, or write from breakfast until bed, my choice. And I've had a lot of wonderful letters from readers — this past week especially, for some reason — and they always bring with them a little dose of feel-good and the sense that I am where I'm supposed to be.
And so, as we approach Thanksgiving, my favorite holiday, I send out a heartfelt thank-you to my family and my readers and also to the greater forces that are not of this earth.
In the midst of that gratitude, it's true that, for me and millions of others, the election was shocking and disappointing. I worry about the future of democracy in a country where a candidate can win by two million votes and lose an election. And I worry even more about the reports of hate crimes.
I wonder if these people who spray-paint swastikas on cars and buildings really have any sense of the vicious history that symbol represents. For Italian practice, I'm reading Se Questo e' un Uomo, (SURVIVAL IN AUSCHWITZ) Primo Levi's account of being sent to Auschwitz as an Italian Jew. Maybe the swastika-painters and those who encourage and applaud them should spend a day, one day, in the conditions Levi experienced for almost a year — being starved, humiliated, brutalized and tormented by sadistic camp guards and an evil system, and see if they truly wish to stand behind that symbol and terrify others with it.
In my own smaller circle, I will try to be as kind and caring and sane as I can possibly be, to compensate, in a tiny way, for some of the violence and anger and near-insanity that stains our streets.
Other people of politics similar to my own, counsel anger and activism. I don't see much evidence that anger has ever played a positive role in human history. The most successful opponents of oppression and bigotry, it seems to me, were persistent and brave, not furious. Lech Walesa, Aung San Suu Ki, Vaclav Havel, Martin Luther King, Mahatma Gandhi, Nelson Mandela in his later life, all may have been angry, but anger didn't rule them and hatred didn't rule them.
Activism is another story. I think we all have to decide, whatever our political views, how active we want to be, and for which causes. I would just like to see American activism without enmity.
One thing I'd like to write more about — I've done this already to a small extent — is the tendency in our society to label each other, to place each other into boxes, to reduce very complicated issues to a slogan on a bumper sticker. I have a lot of compassion for those people who belong to groups that have historically been oppressed, insulted, or ignored. I completely support and will stand up for their desire to be treated fairly.
And I think it's essential to speak up about evil and inequity.
But the way in which we conduct that conversation — on both sides — matters very much. Unless we're talking about hate-groups, you can't really know or judge a person by what segment of society he or she belongs to. I've met good and bad people from every group imaginable, Italian Americans, Russians, gays, African Americans, Mexicans, Micronesians, men, women, old, young, educated, uneducated, conservative, liberal, vegetarian, carnivore, atheist, believer; I've even known a few golfers I don't like.
What I try to do is to see each person as a human being first, and only secondarily as a figure in a certain category. I try to start from a place of giving that person respect, according to the most important moral guideline I've ever heard — do unto others as you would have them do unto you.
In the Tibetan Buddhist teacher Pema Chodron's latest book, LIVING BEAUTIFULLY, she talks about being a 'warrior', and defines that as someone who doesn't close himself or herself off to other people, who keeps trying, who criticizes when criticism is called for, and acts when action is called for, but doesn't reject the "Other" by some panicky self-protection reflex or because of a buried psychological trigger that has little to do with the actual moment. I see that kind of damaging behavior on both sides of the political spectrum, and feel the urge toward it in myself. Look where it's gotten us: to a bitterly divided nation.
"Label me and you negate me," Martin Buber said in his great book I AND THOU. And yet it seems we are labeling each other more and more. So-and-so is a white male. So-and-so is a black lesbian. So-and-so is a liberal, a right-winger, a feminist, a member of the 1%, a welfare recipient, an addict. On one level those descriptions have some usefulness. But, too often, they fuel a righteous anger and lead to judgment and hatred.
I want to operate below or beyond that level and have this as my first thought: so-and-so is a human being. I'm trying to resist the temptation to label, and all the judgments that immediately follow, because I've come to believe that therein lies the cause of most of our troubles.
That's my promise for the next four years and beyond. Try to see through the label to the human essence, try to see the similarities, not the differences. Start there. If I feel criticism or censure is due, I'll act accordingly. If something troubles me enough, I'll go out in the streets, or write about it as bravely as I can, or both.
But, I want to at least try to start from a place of hope, not fear; kindness, not hatred; understanding, not ridicule.
Mockery, it has always seemed to me, is the province of the insecure. Humor, it has always seemed to me, is the solace of the sane.
Writing helps, because when you make or describe characters you have to get beyond the surface, carry them past the cliche, and it dawns on you after a while that we are all tremendously complex beings, some evil, some good, some mixed, but each carrying his or her burden of difficulties, each marred by flaws and weaknesses.
Every single soul pushes a cart of invisible baggage through the world — addiction, physical pain, emotional duress, the scars of abuse or family dysfunction, the buzz of chronic anxiety, the pain of divorce or abandonment, a crippling overabundance of narcissism or self-love, the suffering or early loss of those close to us, the difficulties of old age, the shortcomings of the society in which we live.
Though we like to think so, it seems to me that we very rarely get everything right - including the sense that our political opponents get everything wrong.
This idea of seeing each person as a human being first is an idealistic approach to personal interaction, I know that. It's so much more fun to let go of that ideal, brand the other side as inferior or evil, and feel righteous all the time as we battle and scream.
When I write these words, when I think the thoughts behind them, a little voice inside mutters, "But you can't live up to this, you don't live up to this." True enough, I don't, but I'll never agree that I can't. Until I get to my last breath, I don't want to set up artificial limits on what I might learn in this life. I don't want to take my worst and most petty instincts and let them dictate how I behave.
As I may have said before in these notes, I like to remember something I heard at the Providence Zen Center when I made a brief retreat there years ago. The late, Zen master Seung Sahn happened to be visiting - more good luck for me (there is fair bit of him in the character Rinpoche) — and in response to someone who complained about the difficulty of meditating and leading a pure life, he said these three memorable words:
"Try, only try."
I do try. To a greater or less degree, most of the people I know are also trying. That, it seems to me, is why we are here.
I'd like to share an excerpt from the greeting I wrote for the November 2016 edition of our newsletter.
Happy Thanksgiving. I send my best wishes to you all.
Roland
***
I've spent enough time in less luxurious places — the former USSR, Mexico, the islands of Micronesia — to be thankful for what I have and for what surrounds me. It's still so easy to take it all for granted, so easy to pay attention to what we don't have, what we feel we should have, but I've known enough difficulty in my life to be grateful for the small mercies, even things as basic as a mostly painless day, a good conversation, a solid night's sleep, a meal with friends.
Though not unique in this regard, the writing business is one in which it's particularly easy to place envy before gratitude. There's no empirical standard by which to measure one's ability, so it's tempting to look at other writers and think "I should have won that prize, been given that healthy advance, been praised in a review like that one."
I do what I can to keep those thoughts at bay. I'm mostly a glass-half-full kind of person anyway, and that attitude carries over into my working life. I know how lucky I've been in the writing world. Yes, I've worked hard at it for almost forty years, and yes, Amanda and I have taken and continue to take some big risks in pursuit of the artistic life, but I've been lucky. I know writers with more talent who have not had even my modest amount of success, or who've been ignored entirely by the New York book-making machine.
I have a wonderful family, decent health these days, good friends. I live in a place where — unlike so many who lived in the USSR and still live in places like it in the world - I can go to sleep at night confident that someone won't knock on my door and drag me away to be interrogated or sent to the camps; a place — unlike the outer islands of Chuuk — where, if I'm ill or injured, I know I can get medicine or see a doctor almost immediately. Except for intentional fasts, I've never been truly hungry, not for a day. My work — not without its stresses and frustrations — allows me to spend a lot of time with Amanda and the girls, to play golf or hit the gym on a weekday, or write from breakfast until bed, my choice. And I've had a lot of wonderful letters from readers — this past week especially, for some reason — and they always bring with them a little dose of feel-good and the sense that I am where I'm supposed to be.
And so, as we approach Thanksgiving, my favorite holiday, I send out a heartfelt thank-you to my family and my readers and also to the greater forces that are not of this earth.
In the midst of that gratitude, it's true that, for me and millions of others, the election was shocking and disappointing. I worry about the future of democracy in a country where a candidate can win by two million votes and lose an election. And I worry even more about the reports of hate crimes.
I wonder if these people who spray-paint swastikas on cars and buildings really have any sense of the vicious history that symbol represents. For Italian practice, I'm reading Se Questo e' un Uomo, (SURVIVAL IN AUSCHWITZ) Primo Levi's account of being sent to Auschwitz as an Italian Jew. Maybe the swastika-painters and those who encourage and applaud them should spend a day, one day, in the conditions Levi experienced for almost a year — being starved, humiliated, brutalized and tormented by sadistic camp guards and an evil system, and see if they truly wish to stand behind that symbol and terrify others with it.
In my own smaller circle, I will try to be as kind and caring and sane as I can possibly be, to compensate, in a tiny way, for some of the violence and anger and near-insanity that stains our streets.
Other people of politics similar to my own, counsel anger and activism. I don't see much evidence that anger has ever played a positive role in human history. The most successful opponents of oppression and bigotry, it seems to me, were persistent and brave, not furious. Lech Walesa, Aung San Suu Ki, Vaclav Havel, Martin Luther King, Mahatma Gandhi, Nelson Mandela in his later life, all may have been angry, but anger didn't rule them and hatred didn't rule them.
Activism is another story. I think we all have to decide, whatever our political views, how active we want to be, and for which causes. I would just like to see American activism without enmity.
One thing I'd like to write more about — I've done this already to a small extent — is the tendency in our society to label each other, to place each other into boxes, to reduce very complicated issues to a slogan on a bumper sticker. I have a lot of compassion for those people who belong to groups that have historically been oppressed, insulted, or ignored. I completely support and will stand up for their desire to be treated fairly.
And I think it's essential to speak up about evil and inequity.
But the way in which we conduct that conversation — on both sides — matters very much. Unless we're talking about hate-groups, you can't really know or judge a person by what segment of society he or she belongs to. I've met good and bad people from every group imaginable, Italian Americans, Russians, gays, African Americans, Mexicans, Micronesians, men, women, old, young, educated, uneducated, conservative, liberal, vegetarian, carnivore, atheist, believer; I've even known a few golfers I don't like.
What I try to do is to see each person as a human being first, and only secondarily as a figure in a certain category. I try to start from a place of giving that person respect, according to the most important moral guideline I've ever heard — do unto others as you would have them do unto you.
In the Tibetan Buddhist teacher Pema Chodron's latest book, LIVING BEAUTIFULLY, she talks about being a 'warrior', and defines that as someone who doesn't close himself or herself off to other people, who keeps trying, who criticizes when criticism is called for, and acts when action is called for, but doesn't reject the "Other" by some panicky self-protection reflex or because of a buried psychological trigger that has little to do with the actual moment. I see that kind of damaging behavior on both sides of the political spectrum, and feel the urge toward it in myself. Look where it's gotten us: to a bitterly divided nation.
"Label me and you negate me," Martin Buber said in his great book I AND THOU. And yet it seems we are labeling each other more and more. So-and-so is a white male. So-and-so is a black lesbian. So-and-so is a liberal, a right-winger, a feminist, a member of the 1%, a welfare recipient, an addict. On one level those descriptions have some usefulness. But, too often, they fuel a righteous anger and lead to judgment and hatred.
I want to operate below or beyond that level and have this as my first thought: so-and-so is a human being. I'm trying to resist the temptation to label, and all the judgments that immediately follow, because I've come to believe that therein lies the cause of most of our troubles.
That's my promise for the next four years and beyond. Try to see through the label to the human essence, try to see the similarities, not the differences. Start there. If I feel criticism or censure is due, I'll act accordingly. If something troubles me enough, I'll go out in the streets, or write about it as bravely as I can, or both.
But, I want to at least try to start from a place of hope, not fear; kindness, not hatred; understanding, not ridicule.
Mockery, it has always seemed to me, is the province of the insecure. Humor, it has always seemed to me, is the solace of the sane.
Writing helps, because when you make or describe characters you have to get beyond the surface, carry them past the cliche, and it dawns on you after a while that we are all tremendously complex beings, some evil, some good, some mixed, but each carrying his or her burden of difficulties, each marred by flaws and weaknesses.
Every single soul pushes a cart of invisible baggage through the world — addiction, physical pain, emotional duress, the scars of abuse or family dysfunction, the buzz of chronic anxiety, the pain of divorce or abandonment, a crippling overabundance of narcissism or self-love, the suffering or early loss of those close to us, the difficulties of old age, the shortcomings of the society in which we live.
Though we like to think so, it seems to me that we very rarely get everything right - including the sense that our political opponents get everything wrong.
This idea of seeing each person as a human being first is an idealistic approach to personal interaction, I know that. It's so much more fun to let go of that ideal, brand the other side as inferior or evil, and feel righteous all the time as we battle and scream.
When I write these words, when I think the thoughts behind them, a little voice inside mutters, "But you can't live up to this, you don't live up to this." True enough, I don't, but I'll never agree that I can't. Until I get to my last breath, I don't want to set up artificial limits on what I might learn in this life. I don't want to take my worst and most petty instincts and let them dictate how I behave.
As I may have said before in these notes, I like to remember something I heard at the Providence Zen Center when I made a brief retreat there years ago. The late, Zen master Seung Sahn happened to be visiting - more good luck for me (there is fair bit of him in the character Rinpoche) — and in response to someone who complained about the difficulty of meditating and leading a pure life, he said these three memorable words:
"Try, only try."
I do try. To a greater or less degree, most of the people I know are also trying. That, it seems to me, is why we are here.
November 20, 2019
Some Background To Once Night Falls
[This is taken from November's edition of our newsletter. Incidentally, Lake Union Publishing is sponsoring a GoodReads Giveaway for this novel which ends November 30th.]
In 2007, an editor at Simon and Schuster, Zachary Shisgal, gave me a generous advance for a book on golfing, eating, and family time at Lake Como. I hadn't written a word of the book, just showed him an outline and some ideas, and he took a chance on it. (Zach left S&S shortly after THE ITALIAN SUMMER was published; I hope my work had nothing to do with that.)
The girls were nine and six. A real estate genius named Harold Lubberdinck, who sold and rented houses in northern Italy, found us a small house—half a house, really—on a hill overlooking the lake's western shore. One of the great features of the place was a swimming pool shared with half a dozen neighbors, so we were able to make friends quickly, and there were even some young boys for our girls to play with.
One afternoon, with the girls safely occupied, Amanda and I took a stroll along the paved, unlined road that ran in front of the house and parallel to the lake. The views were otherworldly, the weather was perfect, our kids were healthy and happy, and we felt like the luckiest couple on earth. After we'd gone a few hundred yards, we came upon an elegant, two-story home to our left, a place called Villa Belmonte. It was surrounded by fruit trees and set back behind tall wrought-iron gates and a low stone wall.
When we turned around there, we happened to catch sight of a two-foot-high black cross on the wall to the left of the gates. On the cross was written:
BENITO MUSSOLINI 28 APRILE, 1945.
It made no sense to me at first. I thought Mussolini had been killed in Milan, an hour to the south. There's a famous picture of his mutilated body hanging by the heels near a gas station in Piazzale Loreto.
When we got back to the house I went online, did some research, and was surprised to discover that the cross-shaped plaque marked Mussolini's place of execution: he'd been killed right there, in front of Villa Belmonte.
I started to wonder how he'd ended up there, and, just out of curiosity, I did a little more research. I learned, among other things, that the first—and by certain measures, largest—Allied landing on European soil wasn't in France on D-Day in June, 1944, but in southern Sicily in July of 1943. That landing—the fact that il duce, as the Italians called him (The Leader) had brought the war to Italian soil—resulted in a vote of no-confidence by Mussolini's previously compliant Fascist Council. And that vote led King Vittorio Emmanuelle III—also previously cowed and obedient—to have Mussolini removed from power.
The king had him arrested, in fact, but then didn't know what to do with him. Everybody was after Benito—the Allies wanted to capture him; the Italian partisans wanted to kill him; his good pal Adolf wanted to rescue him. So the king and the Italian generals now in charge of Italy moved him around—first to the tiny island of Maddalena just off the northern Sardinian coast, and then back to the mainland, to a hotel high up in the central mountains.
By a kind of evil magic, one of Hitler's commandos figured out where he was, and put together a daring mission—crash-landing gliders on the mountaintop—that freed Mussolini from captivity and brought him to Germany for a meeting with Hitler. By then, the Allies were battling their way up the boot, the King had signed an armistice, and suddenly the Italians were officially fighting, not against the Allies, but with them. Some troops remained loyal to the Italian fascists and fought with the Germans. Some fought with the Allies. Some just left the army and went home.
Hitler knew he was losing Italy, and he insisted that Mussolini return, to inspire his loyal troops. He installed il duce on a different northern lake, Lake Garda, where he remained, overseeing a puppet government called The Republic of Salo, until the Allies drew close, in the spring of 1945. Although he'd long boasted that he'd fight to the death, Benito gathered a million or so dollars in various currencies, sent his wife ahead, took his young mistress with him, and made a run for the Swiss border in a column of retreating Nazi soldiers.
He almost made it. The partisans caught him on the western shore of Como, a few miles from neutral Switzerland, held him and his mistress for a night in a house in the hills, then brought them to Villa Belmonte and machined-gunned them, along with a couple of loyal associates. They then took the bodies to Milan and dumped them on the stones of Piazzale Loreto, because the Germans had killed fifteen partisans there less than a year before. A mob of Italians did unspeakable things to the corpses, and then hung them up by their heels.
This strange saga intrigued me, and, over the next several visits to Italy, we made a point of visiting various places connected with it: Maddalena Island; Predappio, where Mussolini was born; the mountaintop hotel in the Abruzzo National Park, where he'd been held. I did this, not out of any affection for the Benito Mussolini, it should go without saying, but because I've been fascinated with WWII in Italy for as long as I can remember, and the twisted story of Mussolini's last years had been a chapter of history completely unknown to me.
At the time, I honestly had no notion of writing about it. But then I found a new agent, the wonderful Emma Sweeney. We met for the first time in Manhattan, went into a Morton's Steak House and had a drink, and, since I already had one of my quirky spiritual books in production (THE DELIGHT OF BEING ORDINARY), she asked if I had other interests, other things I wanted to write about.
"I've always had this strange fascination with World War II," I told her, "in Italy, especially."
"Why don't you write a novel about that?" she said.
I liked the idea. A quick look at my books will tell you that my interests are weirdly eclectic, and while the better-selling books have to do with spirituality and road-trips, I've also written about gambling addiction, cystic fibrosis, Russia, Revere, Cuba, badly treated young women in the woods of New Hampshire, golf, food, and Vietnam veterans living in the Micronesian Islands.
So I went home and started researching the partisans in Italy. I felt like a lot had been written about the French resistance, but not much about the Italian resistance, not here in the US at least. I had no interest in writing a whole book about Mussolini, but he fit naturally into the story of the brave Italians who fought against him and against the Nazi occupation. I tried to imagine the lives of ordinary people who lived through the terrors of World War II and the horror of Nazi rule.
After six months or so, I finished the book and sent it to Emma. She liked it, but had a lot of suggestions. I made those changes, according to my own vision, and sent it back to her. She still liked it, maybe even more, but offered another long list of changes. I went through it several more times, and sent it to her again, and at last she felt comfortable showing it to editors.
No one wanted it.
I did not have a readership for WWII suspense novels. I didn't have 'the numbers', which is what the marketing people at the big publishers care most about these days. How many editors rejected the book, I don't remember. A dozen, I'd guess. One by one, disappointing email by disappointing email, Emma gave me the bad news. After another couple of months, she felt she'd showed it to every major house in NY, and we agreed it was time to set it aside.
This was not a good moment for me, to put it mildly. I support my family by writing books. It looked like I'd worked for the better part of a year and would earn exactly nothing from it. At that point, thanks to my friend and former classmate, Joyce Maynard, I met up with the amazing Patricia McFarlane and she hired me to write the story of her life and business, Special Vacations, a company that hosts travel and recreation events for adults with intellectual and physical challenges. (I've written about that in an earlier newsletter.)
While I was on one of Pat's incredible trips, Emma called. "I was just contacted by someone at Amazon," she said. "They have a publishing arm called Lake Union Press and they're looking for historical fiction. Do you mind if I send your book to them?"
I didn't mind.
Lake Union bought the book right away. The advance was low, but I found their terms to be much fairer to writers than what I'd seen in the past, and since then, I've found their editors to be smart, thoughtful, and efficient: they actually answer emails within a day! The contract we agreed upon left me free to publish other kinds of books with other publishers (I have a new spiritual/road-trip book nearly done.)
There were several more rounds of re-working, but Lake Union's editors were respectful in the extreme, careful, attentive, offering good suggestions while giving me the last say in every instance.
My original title was 1943. The editors—and other friends—thought that sounded more like a non-fiction book, and wasn't particularly catchy. Emma suggested THOSE LEFT BEHIND, and, while the people at Lake Union liked that one, it sounded too negative to me. After a lot of back-and-forth, I decided on ONCE NIGHT FALLS, because there's a moment in the novel when one of the Italian mountain-fighters says to the Jewish girlfriend he's hiding:
"Once night falls, Italy belongs to the Italians."
We settled on that. They came up with a design (giving me, as few other publishers had done over the years) some say in it. They found someone to read the audio book (also giving me some say in choosing the reader). And so it turned out that the stroll Amanda and I took in August, 2007, was the mysterious seed of a novel that would be published twelve years later.
If you read the book, I hope you like it. Different as it is from most of my other novels (maybe not so different from FIDEL'S LAST DAYS) I think you'll encounter some of my usual obsessions: the struggle between good and evil; the challenge of finding meaning in life; a bit about food, a lot about place, a fair amount about belief or the lack of it.
November 18, 2019
Follow Up to Cystic Fibrosis & A Little Love Story
After my most recent post, a few readers have asked for some additional background to my novel A LITTLE LOVE STORY. It would be difficult to respond to all of your questions individually. What follows is a piece I wrote about 5 years ago for my monthly newsletter. I apologize for its length, but do appreciate those of you who took the time to express support and ask questions. I remain grateful for your interest. Thank you.
* * *
Fifteen years ago, when I first started playing a lot of golf, I resolved that for every time I played I would set aside a dollar for the local food bank. It was a small thing, a gesture to keep me from feeling too guilty about the many pleasures in my life, and the many hardships in the lives of others. This charitable impulse - we give more to other causes - resulted in less than a hundred dollars a year, but it felt right.
Long before I started playing golf, I started having back problems: I broke my upper back in a bad fall, had surgery on my lower back for a ruptured disc; all of this was, and is, complicated by a bad inherited arthritis. I saw - and see - chiropractors and massage therapists and yoga practitioners and rheumatologists, and I take pills and give myself shots. I'm fine, really. I can golf and lift weights and walk and bang nails and climb ladders, and I'm always grateful that the fall didn't cripple me and that the pain is small compared to that suffered by other relatives with even more serious types of arthritis.
During my weekly visits about twenty years ago, one of my chiropractors - a friend, really - would often tell me about his three daughters. They all sounded so bright and wonderful that I have to say, as someone who had not yet known the joys of fatherhood, I was sometimes jealous.
And then one week the story changed radically: he and his wife had discovered that their oldest girl, who'd been coughing for ten years, had been misdiagnosed all that time. Their new doctor had done some tests and discovered that the girl actually had, not allergies or sinus issues, but something called cystic fibrosis.
More tests revealed another terrible piece of news: the youngest girl had CF as well.
I'd heard of the disease, but only vaguely. My friend filled me in: it was caused by a genetic
glitch that resulted in dehydrated mucus. That seemed a small thing, but it turned out that sticky mucus led to bad lung infections, and often to reduced function of the pancreas, and that, at the time, the life expectancy for people with cystic fibrosis was in the high twenties. He and his wife, naturally, were in a state of shock. They'd begun researching the disease, taking their daughters to the nearest CF center - an hour away - doing a daily regimen of chest physical therapy that involved the parents drumming on the girls' chests, sides, and shoulders for 45 minutes at a time.
The girls started taking a number of medications, did what they could to avoid colds, changed their diets.
I felt so sad at this news that, in another tiny gesture, I started giving my "golf dollars" to the CYSTIC FIBROSIS FOUNDATION IN BETHESDA MARYLAND. (www.cff.org)
Not long after that our own first daughter, Alexandra, was born. She seemed healthy, although we noticed when she caught a cold it seemed to last an unusually long time and often produced a cough that went on and on and seemed better suited to an adult pair of lungs than to hers. Three years later, when Amanda was pregnant with our second child, a genetic counselor asked if our first had been checked for CF. We didn't know. To avoid having Alexandra go through the testing procedure, Amanda and I were first tested: unless both parents are carriers of the defective gene, their children can't have CF.
It turned out we were both carriers (carriers are mostly asymptomatic but can have some sinus and digestive troubles). It was too late in the pregnancy to test the child in Amanda's womb, but Alexandra was tested, and, after a very difficult waiting period, we learned that she did, indeed, have cystic fibrosis.
It was almost as if the conversations with my chiropractor friend had been preparation for that harsh moment. I already knew a lot about the disease and immediately Amanda and I set out to learn more. We started doing nightly chest PT, we started keeping Alexandra away from kids with colds, we started doing the fundraising walk every spring, and our friends and relatives responded with a generosity that often brought us to tears.
I won't go into all the medical details here; there's plenty of information online for those who are interested. But I began to write about CF, both in an attempt to learn more about it and to increase awareness. I wanted more money to be raised for research, and I didn't want any more parents to be blind-sided the way my friend and his wife had been.
I published a piece in the PHILADELPHIA INQUIRER SUNDAY MAGAZINE, another in GOOD HOUSEKEEPING, and then a longer one in READERS DIGEST. I spoke to doctors and patients, interviewed family members and caregivers, and read whatever I could find on the subject.
Of all these interviews and articles, the one that hit me most powerfully was a phone conversation with a young professional woman with cystic fibrosis. Like most people with the disease, she was stoic about the sometimes grim and always inconvenient treatments, about the breathing troubles, the recurrent infections, the hospital visits to "clean out" the bad colonies of bacteria in her lungs, the digestive issues, the enzymes with every meal, the worry that she'd be infected with a virulent strain of B-Cepacia and her condition would quickly grow worse. She was even at peace with one particularly horrible aspect of cystic fibrosis - that sufferers should not be within an arm's length of each other for fear of passing along one of the long list of bacteria that present no danger to the rest of us, but can gradually destroy the lung tissue of someone with CF.
She was typically without complaint about those things, but what bothered her - and I could clearly hear the pain in her voice - was the social aspect of the disease, the fact that, as she put it, "I'm not a good long-term investment," so guys were happy to date her, but unwilling to enter into any kind of serious relationship.
I could not keep from imagining my own daughter in her situation.
My books always come from what I think of as "my center". I don't write at arm's length, don't decide to research subjects out of intellectual curiosity and then write books about them (not that there's anything wrong with that; it's just not how I operate). I write, almost always, about what I really care about, and since cystic fibrosis was continually on my mind, I decided to write a novel about it.
The article in Readers Digest had been about a young man in San Diego named Matt Joyce, a passionate and expert surfer, whose life had been saved - 'extended' is a better word - by the generosity of two men, one a complete stranger. Each of them donated a lobe of their lungs - one from the right lung, one from the left - so that this young man's ruined lungs could be removed and he could keep breathing. The surgery - it's called a 'living lobar transplant' and is performed only about fifteen times a year in the US - worked, and when I saw Matt he was at the beach, on his board, and looking fine, I used that surgery in A LITTLE LOVE STORY, and created a situation in which the woman had an advanced case of CF but the man was committed to her anyway.
I'll say no more about the plot, and certainly not about the ending, except that I didn't want to write some kind of Hallmark Card finish to the story. The first few pages of the novel are actually its ending. Some readers have been confused by that, some bothered; many like it. But I wouldn't change the last line of the book for anything.
During my tour for the novel, after a reading /talk at Baker's Books in South Dartmouth,
Massachusetts, a beautiful young woman came up to me and said she had CF and had driven an hour to thank me for writing the story.
Alexandra is 17 now. She's had three sinus surgeries and a myriad of other troubles, but she is leading a life that is very close to that of a healthy young woman. Her boyfriend, a young man from Italy, a first-class guy, seems, almost as if he stepped out of the pages of A LITTLE LOVE STORY, completely unbothered by her sometimes persistent cough and the various changes she's had to make in her life because of CF.
Juliana, tested shortly after birth, is a carrier, like her parents, and very healthy. My friend's
daughters - both of them with more serious manifestations - are doing well, but they have
suffered mightily over the intervening years, and the stress on the parents is not measurable.
The life expectancy of people with CF has jumped ten years since Alexandra's diagnosis, and new medications promise, if not a cure, then at least a treatment regimen that will make life much more bearable for the 70,000 people worldwide who suffer from what is truly a vicious disease.
My heart goes out to all the CF sufferers and to their families, and my thanks and thoughts to the researchers and doctors and respiratory therapists and social workers and dietitians, and everyone the disease has touched in any way. May its impact be reduced, even eliminated in some lives, by
the time another summer has given way to fall.
Thank you for reading.
* * *
Fifteen years ago, when I first started playing a lot of golf, I resolved that for every time I played I would set aside a dollar for the local food bank. It was a small thing, a gesture to keep me from feeling too guilty about the many pleasures in my life, and the many hardships in the lives of others. This charitable impulse - we give more to other causes - resulted in less than a hundred dollars a year, but it felt right.
Long before I started playing golf, I started having back problems: I broke my upper back in a bad fall, had surgery on my lower back for a ruptured disc; all of this was, and is, complicated by a bad inherited arthritis. I saw - and see - chiropractors and massage therapists and yoga practitioners and rheumatologists, and I take pills and give myself shots. I'm fine, really. I can golf and lift weights and walk and bang nails and climb ladders, and I'm always grateful that the fall didn't cripple me and that the pain is small compared to that suffered by other relatives with even more serious types of arthritis.
During my weekly visits about twenty years ago, one of my chiropractors - a friend, really - would often tell me about his three daughters. They all sounded so bright and wonderful that I have to say, as someone who had not yet known the joys of fatherhood, I was sometimes jealous.
And then one week the story changed radically: he and his wife had discovered that their oldest girl, who'd been coughing for ten years, had been misdiagnosed all that time. Their new doctor had done some tests and discovered that the girl actually had, not allergies or sinus issues, but something called cystic fibrosis.
More tests revealed another terrible piece of news: the youngest girl had CF as well.
I'd heard of the disease, but only vaguely. My friend filled me in: it was caused by a genetic
glitch that resulted in dehydrated mucus. That seemed a small thing, but it turned out that sticky mucus led to bad lung infections, and often to reduced function of the pancreas, and that, at the time, the life expectancy for people with cystic fibrosis was in the high twenties. He and his wife, naturally, were in a state of shock. They'd begun researching the disease, taking their daughters to the nearest CF center - an hour away - doing a daily regimen of chest physical therapy that involved the parents drumming on the girls' chests, sides, and shoulders for 45 minutes at a time.
The girls started taking a number of medications, did what they could to avoid colds, changed their diets.
I felt so sad at this news that, in another tiny gesture, I started giving my "golf dollars" to the CYSTIC FIBROSIS FOUNDATION IN BETHESDA MARYLAND. (www.cff.org)
Not long after that our own first daughter, Alexandra, was born. She seemed healthy, although we noticed when she caught a cold it seemed to last an unusually long time and often produced a cough that went on and on and seemed better suited to an adult pair of lungs than to hers. Three years later, when Amanda was pregnant with our second child, a genetic counselor asked if our first had been checked for CF. We didn't know. To avoid having Alexandra go through the testing procedure, Amanda and I were first tested: unless both parents are carriers of the defective gene, their children can't have CF.
It turned out we were both carriers (carriers are mostly asymptomatic but can have some sinus and digestive troubles). It was too late in the pregnancy to test the child in Amanda's womb, but Alexandra was tested, and, after a very difficult waiting period, we learned that she did, indeed, have cystic fibrosis.
It was almost as if the conversations with my chiropractor friend had been preparation for that harsh moment. I already knew a lot about the disease and immediately Amanda and I set out to learn more. We started doing nightly chest PT, we started keeping Alexandra away from kids with colds, we started doing the fundraising walk every spring, and our friends and relatives responded with a generosity that often brought us to tears.
I won't go into all the medical details here; there's plenty of information online for those who are interested. But I began to write about CF, both in an attempt to learn more about it and to increase awareness. I wanted more money to be raised for research, and I didn't want any more parents to be blind-sided the way my friend and his wife had been.
I published a piece in the PHILADELPHIA INQUIRER SUNDAY MAGAZINE, another in GOOD HOUSEKEEPING, and then a longer one in READERS DIGEST. I spoke to doctors and patients, interviewed family members and caregivers, and read whatever I could find on the subject.
Of all these interviews and articles, the one that hit me most powerfully was a phone conversation with a young professional woman with cystic fibrosis. Like most people with the disease, she was stoic about the sometimes grim and always inconvenient treatments, about the breathing troubles, the recurrent infections, the hospital visits to "clean out" the bad colonies of bacteria in her lungs, the digestive issues, the enzymes with every meal, the worry that she'd be infected with a virulent strain of B-Cepacia and her condition would quickly grow worse. She was even at peace with one particularly horrible aspect of cystic fibrosis - that sufferers should not be within an arm's length of each other for fear of passing along one of the long list of bacteria that present no danger to the rest of us, but can gradually destroy the lung tissue of someone with CF.
She was typically without complaint about those things, but what bothered her - and I could clearly hear the pain in her voice - was the social aspect of the disease, the fact that, as she put it, "I'm not a good long-term investment," so guys were happy to date her, but unwilling to enter into any kind of serious relationship.
I could not keep from imagining my own daughter in her situation.
My books always come from what I think of as "my center". I don't write at arm's length, don't decide to research subjects out of intellectual curiosity and then write books about them (not that there's anything wrong with that; it's just not how I operate). I write, almost always, about what I really care about, and since cystic fibrosis was continually on my mind, I decided to write a novel about it.
The article in Readers Digest had been about a young man in San Diego named Matt Joyce, a passionate and expert surfer, whose life had been saved - 'extended' is a better word - by the generosity of two men, one a complete stranger. Each of them donated a lobe of their lungs - one from the right lung, one from the left - so that this young man's ruined lungs could be removed and he could keep breathing. The surgery - it's called a 'living lobar transplant' and is performed only about fifteen times a year in the US - worked, and when I saw Matt he was at the beach, on his board, and looking fine, I used that surgery in A LITTLE LOVE STORY, and created a situation in which the woman had an advanced case of CF but the man was committed to her anyway.
I'll say no more about the plot, and certainly not about the ending, except that I didn't want to write some kind of Hallmark Card finish to the story. The first few pages of the novel are actually its ending. Some readers have been confused by that, some bothered; many like it. But I wouldn't change the last line of the book for anything.
During my tour for the novel, after a reading /talk at Baker's Books in South Dartmouth,
Massachusetts, a beautiful young woman came up to me and said she had CF and had driven an hour to thank me for writing the story.
Alexandra is 17 now. She's had three sinus surgeries and a myriad of other troubles, but she is leading a life that is very close to that of a healthy young woman. Her boyfriend, a young man from Italy, a first-class guy, seems, almost as if he stepped out of the pages of A LITTLE LOVE STORY, completely unbothered by her sometimes persistent cough and the various changes she's had to make in her life because of CF.
Juliana, tested shortly after birth, is a carrier, like her parents, and very healthy. My friend's
daughters - both of them with more serious manifestations - are doing well, but they have
suffered mightily over the intervening years, and the stress on the parents is not measurable.
The life expectancy of people with CF has jumped ten years since Alexandra's diagnosis, and new medications promise, if not a cure, then at least a treatment regimen that will make life much more bearable for the 70,000 people worldwide who suffer from what is truly a vicious disease.
My heart goes out to all the CF sufferers and to their families, and my thanks and thoughts to the researchers and doctors and respiratory therapists and social workers and dietitians, and everyone the disease has touched in any way. May its impact be reduced, even eliminated in some lives, by
the time another summer has given way to fall.
Thank you for reading.
November 17, 2019
Cystic Fibrosis and A Little Love Story
As many of my readers know, our older daughter was born with cystic fibrosis. As some of you also know, Vertex recently developed a drug, Trikafta, that promises to be of great help to 90% of people suffering with that awful disease. My friend and sometime publisher, Peter Sarno, tried for years to get the rights back to A Little Love Story—the novel I published when Zanny was first diagnosed. The main female character there has CF. Peter did finally get the rights back (it was basically out of print) and is bringing out a fresh version in honor of the Trikafta approval. The eBook version is now available and the paperback should be released in about a week. My thanks to everyone who participated in our various CF fundraisers over the years. Your generosity contributed to the development of this new drug and others and eased a lot of suffering for tens of thousands of people and their families. We still have a way to go, but this month's announcement was a huge deal in the CF community.
