The Patient’s Perspective on the Burden of Disease in Ankylosing Spondylitis by Lisa See

If you’d rather read or download the pdf, you can do so by clicking this link.

When Dr Michael Weisman asked me to contribute an essay for this collection, I was flattered, but I also reminded him that I am not a doctor and I have not done any medical research. He laughed, and said, “I know that!” He requested I write something personal about my experiences as an ankylosing spondylitis (AS) patient, and that is what I have tried to do. Going back over my 51 years with AS, I see that I have had a lot of adventures—some good, some bad, some funny, and a few creepy, depressing, scary, uplifting, and even inspiring. Nothing I write here is meant to be critical of the doctors or treatments I have had. Some doctors and treatments were better than others, though. I have hardly been perfect, either. As an AS patient, I have at times been dubious, gullible, optimistic, sad, scared, and stubborn.

I was 13 when I first started having back problems. My family lived in Topanga Canyon, California. My mom was a bit of a hippie. Taking me to what she called a regular doctor was not her cup of tea, so she took me to visit what would be the first of many chiropractors. The adjustments gave me some relief but not enough. I still woke up nearly every night with my lower back in spasms. I was stiff. I may have been moderately athletic in elementary school—I was a fast runner and I was not bad at playing first base—but these things hurt my body too much now that I was in junior high. Complaining did not get me anywhere. My mother was a magical thinker.

When Dr Michael Weisman asked me to contribute an essay for this collection, I was flattered, but I also reminded him that I am not a doctorand I have not done any med- ical research. He laughed, and said, “I know that!” He requested I write something per- sonal about myexperiences as an ankylosing spondylitis (AS) patient, and that is what I have tried to do. Going back over my 51 years with AS, I see that I have had a lot of adventures—some good, some bad, some funny, and a few creepy, depressing, scary, uplifting, and even inspiring. Nothing I write here is meant to be critical of the doctors or treatments I have had. Some doctors and treatments were better than others, though. I have hardly been perfect, either. As an AS patient, I have at times been dubious, gullible, optimistic, sad, scared, and stubborn.

I was 13 when I first started having back problems. My family lived in Topanga Canyon, California. My mom was a bit of a hippie. Takingme to what she called a reg- ular doctor was not her cup of tea, so she took me to visit what would be the first of many chiropractors. The adjustments gave me some relief but not enough. I still woke up nearly every night with my lower back in spasms. I was stiff. I may have been moderately athletic in elementary school—I was a fast runner and I was not bad at playing first base—but these things hurt my body too much now that I was     in junior high. Complaining did not get me anywhere. My mother was a magical thinker.

If I had a sore throat, it was because I was swallowing my emotions and therefore my words. If my back hurt, it was because I did not want tobear the weight of my respon- sibilities, like taking out the trash or doing my homework.

There came a day when my mom realized that my visits to the chiropractor were not helping me all that much, whereas at the same time I was not getting any closer to what she saw as the deeper emotional source of my physical issues. She broke down and took me to a regular doctor. The pediatrician bent me this way and that. Although I was only 13, I could no longer touch my toes. Once the examination was done, the doctor announced with something like awe, “You have the back of a 90- year-old man” (“man,” not even a woman), This was followed by, “You will never be able to bear children.” The doctor gave me a list of don’ts: Don’t go horseback riding. Don’t jog or run. Don’t do any sports that would have a jarring impact on my spine. I was not prescribed painkillers, which was a good thing, but I also was not prescribed any other type of medication or physical therapy. This was 1968. Was he unable to make a diagnosis  because he was not accustomed to seeing arthritic diseases in  his pediatric practice, because I was a girl (when the common wisdom at the time was that AS was a man’s disease), or because my mom seemed so flakey, and, by extension, I must have been flakey too? I do not know. What I do know is that the source of my problems remained a mystery, and my prognosis seemed,  even  at that age, rather grim.

Spring ahead to 1974. I was 19, going to college but living at home. I had gotten stiffer, and I continued to wake up in the middle of the night with my lower back mus- cles in spasms. We lived in an old, funky, 2-story cabin. To get from my bedroom to the main part of the house, I had to walk outside. One morning I awoke in terrible pain. I hobbled outside, wound my way upstairs, entered the house, and fainted on the kitchen floor. The pediatrician, whom I was still seeing, announced that I had lumbago and sciatica. He said I should stay in bed, which I didfor the next 6 weeks. I lay on my back with my legs propped up on pillows. Not moving, I now know, was the worst thing I could have done.

My mother was desperate. She became convinced I would spend the rest of my life as an invalid. (There was a part of me—still a teenager, remember—that was rather enchanted by the idea, thinking of all the invalids in literature: Camille, Clara in Heidi, Pollyanna, Beth in Little Women, and Colin in The Secret Garden.) My mother may have been flighty in some ways, but she also has a PhD, was a singlemother support- ing my sister and me through her writing and teaching as an English professor, and was a woman who never gave up through all the hardships in her life, of which there were many. She wrangled every person she could think of to see what, if any, treat- ments might help me. I was caravanned down to Orange County to have electromag- netic field therapy. I was driven out to the desert tosoak in hot springs and mud baths to draw out toxins. I was taken to a new set of chiropractors. Some crystals may have passed over me once or twice. I returned to my pediatrician, who only repeated what he had said years before—that I would never be able to bear children. This time he added that I would never be able to walk without a limp. Bottom line: nothing helped. I was flat on my back in bed, hopeless.

One night while out to dinner, my mother overheard a couple at the next table talking about an acupuncturist—recently arrived in the United States—who was introducing the ancient technique at a local university medical school and secretly giving treat- ments at his home. (This was still 1974. In 1976, California became the eighth state to license acupuncture.) My mom leaned over and asked how to reach this Chinese doctor, whom I will call Dr Yee. The diner outlined an elaborate system of calling a number, letting it ring so many times, hangingup, calling back, letting it ring another specific number of times, and then calling back again. My mother followed the instruc- tions and got an appointment.

I could barely walk. I mean, barely. I had already been in bed, except for visits to various traditional and nontraditional doctors, for 6 weeks. My mother drove me to    a tract house in the San Fernando Valley. She stayed in the living room, while Dr Yee’s pretty, young wife led me to their baby’s bedroom, outfitted with a crib, chang- ing table, and twin bed. I was told to take off all my clothes and lay on the bed. (Because acupuncture was not practiced in the state, no one—apart from that man  in the restaurant—had any experience with it. Neither my mother nor I questioned the fully naked request.) Dr Yee came in, spoke to me for a few minutes, and then brought out the longestneedles I had ever seen. The deepest one went several inches into my hip. Dr Yee left me alone. Laying there, not moving and hoping therewould not be an earthquake, I felt something I had not felt in weeks, no, years. It was a total absence of pain. The doctor returned, pulled out the needles, and left me to get dressed. I walked out of that house without a limp.

The relief did not last, however, and I returned twice a week for treatments. I improved so quickly that I was able to attend classes again. I started driving again too. One day when I arrived at the house, Mrs Yee and the baby were out. This time Dr Yee led me to the master bedroom, where I was told to take of all my clothes, as usual. And, as usual, once I was settled, Dr Yee came in and inserted the needles. Later, after he pulled them out, he sat on the edge of the bed. I remember this so clearly: the big mirror on the ceiling, his matching white patent leather belt and shoes, and the earnest look on his face. “Now that I have cured you,” he said, “I must have sex with you.”

I was stark naked, on the man’s marital bed, but somehow I had the wherewithal to say, “We don’t do things like that in this country!”

As a 19 year old, I talked my way back into my clothes and out the door. He began calling me at home. Would I like to take a ride in hisCitroe¨ n? (No.) Would I like to have lunch? (No.) Did I want him to heal me? (Yes.) My mother came up with a solution: she asked one of her students, a Vietnam veteran who had served in the Marines, to accompany me to all future acupuncture appointments.

Now I know that this episode was my first major flare-up, but I had no such knowl- edge then, because I still did not have a diagnosis. Lifewent on. I continued my college work. I went to parties and discos. My dad—an anthropology professor—got a new job, which came with good insurance benefits. Although I had not lived with him since I was 3 years old, he put me on his policy and got me in to see an orthopedistat Kaiser Permanente. The doctor confirmed things I already knew: I had the back of an old man, and I would never be able to bear children, because he could see on my radio- graphs that my sacroiliac bones were fused. He came up with a treatment plan, which included a stretching routine and regular sit-ups. I was religious about my physical therapy, which seemed to help, especially if I did my exercises at night just before bed. I was still to follow that initial list of don’ts, however: no horseback riding, running, jogging, etc.

After 2 years in college, I left to travel around Europe for a few years. I came home, graduated, started writing, drifted away from doing my exercises and stretches, and began to get tighter and stiffer. When I met my future husband, I was 25 years old and I could just barely touch my knees. I was in unrelenting, low-grade pain, but I had lived with it so long that I did not think much about it. The constant inflammation took a toll on my body, though. When I got married, I weighed 44.4kg. (It was not until years later that my husband would confide that when we married he expected that I would 1 day end up an invalid—in a wheelchair if I was lucky, bedridden if I was not.) I am happy to say that I gave birth to 2 children. I am not going to say it was a walk in the park, but, thankfully, all the dire predictions failedto occur. After my second son was born, I was exhausted, achy, and unable to sleep because my back hurt so much. I went to my general practitioner. I listed my complaints. He looked at me and not un- kindly said, “What do you expect? You’re a mother with young children.” I felt slightly vindicated when the bloodwork he had ordered came back and revealed that my thy- roid levels were low. He suspected Hashimoto disease. I have been on thyroid med- ications ever since, which improved some symptoms but did not ease my aching back.

That is how things remained for another 5 years or so. Then there came a night when my husband and I were at a dinner party. Just as when my mother had overheard someone talking about the acupuncturist, on this night I eavesdropped on a conver- sation about a doctor who seemed to perform miracles on people with back and  neck pain. I made an appointment. A new round of radiographs were taken, and, finally, I got my diagnosis. The way the doctor explained it, there had recently been

2 young men who had died in motorcycle  accidents.  Radiographs  showed  that their sacroiliac joints were fused. Their deaths, and this discovery, led to a way to di- agnose AS.

Just now, having looked up the history of AS, I must doubt the veracity of this story, but at the time it made sense to me. It also made sense when the doctor said that on average it took much longer for women than for men to be diagnosed. In the 1970s, as I understand it, it took men 3 years to 4 years to receive a diagnosis, whereas for women the average was 10 years. I was in my mid-30s. In my case, it had taken approximately 20 years. I was prescribed Indocin, as well as physical and occupa- tional therapy, and given a pamphlet suggesting I might struggle with the diagnosis and that I could benefit from joining a support group. On the one hand, I was relieved. I could finally put aname to the pain I had suffered. AS was not something in my head or some mysterious way my body was trying to communicate, as my mother had al- ways told me. The Indocin worked amazingly well. (In the coming years, I would also try Celebrex, Mobic, and Vioxx, all ofwhich produced side effects while not working as well for me as Indocin did.) On the flip side, after all the years of uncertainty, I did indeedstruggle with the diagnosis. The word, disease, did not sit well with me. Instead of trying to deal with my feelings, I told my husband I was not the type of person who joined support groups. I went ahead with the physical therapy and occupational ther- apy—some techniques of which I use to this day.

When this doctor retired, I was at long last referred to a rheumatologist. He was hor- rified that I had been on a nonsteroidal anti-inflammatory drug (NSAID) for 20 years. I did not react well when he gave me a stern lecture, informing me that I had been taking Indocin for far too long and that, although I had never had a reaction to the drug, if I ever did, I probably would have a stomach hemorrhage and die. “You’ll never get to the hospital in time,” he warned. This should have scared me. This should have inspired me to consider other medications. Instead, I was so mad that I immediately looked for another rheumatologist. Let me note for the record that I have not always been the best patient. But you could also look at this another way: in all the years I had been taking Indocin, not a single doctor, including my personal physician, had ever mentioned anything about side effects that might include stomach hemorrhage, let alone death. And, unless he had a better idea, I needed that Indocin.

My second rheumatologist prescribed lansoprazole to protect my stomach from po- tential NSAID damage. She spoke to me about the new biologics, which sounded promising. But when I heard that I would have to  give myself a shot.forget  that! She also mentioned thatCedars-Sinai Medical Center here in Los Angeles was looking for AS patients willing to participate in a national clinical study. In Los Angeles, the study was being overseen by Dr Weisman. Would I be  interested in finding out  more about it? Absolutely! By this time, I knew of Dr Weisman’s reputation but had been told he was not accepting new patients.  If I joined the study, he would see   me, if only for a few minutes, every time I came in to have my blood drawn, have ra- diographs, or have measurements taken.

My participation was not entirely self-motivated. After my own adventures and mis- adventures, and after all the information and misinformation I had received over the years, I wanted to be a part of something that might create new ways to diagnose  the disease, possibly change perceptions of who might get it, and look at the differ- ences between how the disease presents in men and women (or if these differences are more a function of gender biases). Most important, I hoped that by participating in the study, I could be part of a cure, atbest, and better understanding of the disease, at least, in case my children, grandchildren, or great-grandchildren should find them- selves with back pain and stiffness as they entered puberty. I am proud to say that when additional studies came up, I prevailed on my parents andmy sons to participate along with me. They all did.

I am a writer by profession. I go on the road for 6 weeks to 12 weeks a year on exten- sive—and grueling—book tours. On a typical day, I fly to a new city, speak at a lunch event, speak at an evening event, maybe do an interview or 2, shake lots of hands, sign piles of book, and get plenty of impromptu hugs from fans. In other words, I am in an environment of high stress, not enough rest, with a heightened exposure to germs. In 2011, when my novel Dreams of Joy was published, it debuted at number 1 on The New York Times bestseller list. Whensomething like that happens, the publisher dou- bles down. My tour was extended. I did even more events. I was in Raleigh, North Car- olina, when I developed a cough. By the time I got to Atlanta, I was very sick. But everyone was relying on me, so I kept traveling. Whenever I flewback to Los Angeles, I would see my personal physician. I was prescribed antibiotics and different medica- tions to help with the cough. Icontinued to travel hard and put out a lot of energy doing events. I lost weight. I started to have pain in what felt like every joint. My knees,wrists, and fingers were swollen, hot, and pink. My hips, neck, and back felt like they were on fire. It hurt to sit. It hurt to lay down. It hurt tomove. I was exhausted.

When the tour ended, I saw my rheumatologist. My bloodwork showed a high level of inflammation. Actually, all my bloodwork looked bad. She did more tests. We tried all the usual treatments, plus cortisone injections. I did not improve. If anything, I got worse. I developed the symptoms and markers for Reynaud disease. My rheumatol- ogist was sure that 1 or more new autoimmune diseases were emerging—Sjo¨ gren syndrome, rheumatoid arthritis, lupus, or rhupus. I was told it might take as long as   5 years to get a conclusive diagnosis.

If I have learned anything over all these years, it is that I need to be proactive about my care. It is important to try different treatments. It is important to get second opin- ions and sometimes third opinions. It also is important for a patient to keep his or her own medical records.(Now these can be accessed more easily online, but in the past I had to request copies of test results.) The next time I had an appointment for the AS study, I brought the file I had kept for the previous 20 years with me. When Dr Weisman came in for his usual quick visit, I asked himto look at my file and inquired if he would consider taking me on as a patient. He said yes to both. He told me not to worry. Those other diseases were not on my horizon. I was, however, having a serious flare-up    of my AS.

It was through Dr Weisman’s encouragement that I finally agreed to take Enbrel. He said it might take months before I felt a difference. Forme, relief from my symptoms was immediate, and I kick myself to this day for being so resistant to giving myself a shot, which turned out to not be a big deal after all. Forsomeone like me, who travels a lot, there are challenges to having to take a medication that requires refrigeration. I realize that now some ofthese requirements have been relaxed; nevertheless, patients must be careful with how they handle delivery and storage of this drug. (It cannot, for example, be delivered to your front door and wait all day in the sun for you to come home. Believe me, no patient wants to pay the out-of-pocket replacement cost for     a single injection, let alone a box of 4 injections.) This refrigeration requirement has led to some interesting experiences. I have been invited to store my medicine in hotel kitchens and bar refrigerators across the country as well as in SouthAmerica and Asia. I have had conversations with chefs, bartenders, maıˆtres d’s, general managers, and hostesses. I have been given sneakpeeks of what is coming up on dinner menus and been treated more than once to the house cocktail.

It has been a long and circuitous route. I still do not sleep very well, and many nights I can be found sleeping seated on the couch with my back and neck supported by pil- lows. The fatigue I feel—from lack of sleep, too much stress, and a daunting work- load—may or may not be worse than what other AS patients experience. I feel fortunate compared with people like my father’s cousin, who did not receive a diag- nosis of AS until a few years ago, when she was 85 years old. She had lived in pain for the vast majority of her life, not knowing why.

I try to cover all bases in my care. I watch what I eat to avoid—or at least cut down on—foods known to cause inflammation, and I try to rest for an hour in the late after- noon before resuming work. I do not dwell on the ways the disease can manifest in the eyes, bowel, or heart, but that does not mean I do not watch out for symptoms. I now have an ophthalmologist and a cardiologist. I am my mother’s daughter, so I also have a naturopath, chiropractor, acupuncturist, and Chinese traditional medi- cine doctor. (I would not go—or pay the money—if I was not helped by their treat- ments to some extent.) A few years ago, I started working privately with a Pilates instructor, who said the goal should be for me to touch my toes within 2 years. Although I thought the idea was far-fetched, I agreed to try. I not only met the goal   of touching my toes but also, on a good day, I can get my palms flat on the floor. Now, in addition to hiking, tennis, and Pilates, I have added yoga. My current goal    is to keep being able to touch my toes until the day I die. (So much for a back like     a 90-year-old man!)

Now, when I learn of someone who has been diagnosed with AS, I always offer to talk to them. Usually, they are upset to have a disease.They are scared, having looked up various outcomes on the Internet. They ask me a variety of questions: Will I end up bent over like a pretzel,or will my case be mild? Will I be able to work? Will I be able to travel? Will I be able to take care of my family? Will I be able to rock climb, skydive, garden, knit, or golf? I cannot give them definitive answers. I can only share what I have learned from my own experiences. Try different treatments, because you never know what will work for you or help you, even if it is for a short time, even if it is only from theplacebo effect. Trust your doctors but be willing to move on—and up—to new ones if, and when, you can. Remember doctors can be wrong. They are only human, after all. Understand that every new physician you see—whether a gynecologist or neurologist—will doubt your diagnosis, as still happens to me to 30 years after finally receiving mine. (These days it is easier to prove to a new physician with the results from an antinuclear antibody or HLA-B27 test.) Keep your freezer stocked with ice- packs and bags of frozen peas to reduce inflammation but know that sometimes  only a heating pad will give you relief. Most important, remember that although the dis- ease is now a part of you, itdoes not define you. Try to look at AS as an adventure, with plenty of twists, turns, and discoveries along the way. And always remember to thank the people who help you—whether physical therapists, yoga instructors, nutritionists, or rheumatologists—for their insights, patience, persistence, and encouragement. Then thank your body, flaws and all, for getting you through another day.

Bustle Talks to Lisa See about her New Book China Dolls


BUSTLE: In this book, you depict a time in American history when Asian women endured huge obstacles, especially in the entertainment industry. Could you have set this book in the present day?

LISA SEE: Oh, I think so. How many Asian-American women can you name in the entertainment industry today? Lucy Liu, Sandra Oh, and Margaret Cho are the only ones that pop immediately into my mind. If you’re looking for big Asian women stars, they usually are from China, Taiwan, or Hong Hong. So yes, I think there are still many obstacles for Chinese-American women — and men — in the entertainment industry, whether before or behind the camera.

In writing this era, you include some great details about the reality of the business of entertainment. What research did you do to flesh this out?

I did all kinds of research. I was able to access the collections at the Museum of the Chinese in America in New York and the Chinese Historical Society of America in San Francisco. They had costumes, photographs, videos, and all kinds of ephemera — from nightclub menus to scrapbooks kept by individual performers. I also was able to use oral histories of performers (all of whom are gone now) done by MoCA and Eddie Wang back in the 1970s and 1980s.

In addition, I interviewed what I would call pioneer performers who started in the 1930s, as well as those who came up in the nightclub scene in the ’50s and ’60s. Many of the characteristics for the fictional characters of Grace, Ruby, and Helen come from actual Chinese-American performers. Dorothy Toy, for example, was considered to be the Chinese Ginger Rogers, yet she was actually Japanese. Her experiences in Hollywood during World War II inspired some of what happens to Ruby in China Dolls.  READ THE FULL INTERVIEW

Another Essay for Reading Group Guides

Here’s a second essay I wrote for ReadingGroupGuides.com.  I really love this site for all the fun ideas they have for book clubs.  Check it out!

These days, every writer—and publisher too, for that matter—will tell you that it’s important to reach out to book clubs.  But few people talk about how important book clubs are to writers.  I don’t mean that a book’s success or failure can hinge on whether or not book clubs buy our books.  (Don’t get me wrong.  This is a wonderful thing and very important, and I’m grateful to all the book clubs who have bought my books.)  I’m talking about something else. I’m talking about the inspiration and courage book clubs give writers to sit down, be vulnerable to emotions (and possible criticism), and write from the heart.

Let’s go back in time about five years.  I think I had a pretty good reputation as a writer.  I was “critically-acclaimed,” meaning I got good reviews but not many people read my books.  When I sat down to write Snow Flower and the Secret Fan, people—friends, other writers, folks in publishing—told me, “No one’s going to read that book.”  They had all sorts of reasons: it took place in the past.  It took place in China.  It was about women. Worse, it was about women’s friendship.  It was sometimes heartbreakingly sad. And that footbinding stuff! Yuck!  No one’s going to read it.

All that doom and gloom was actually quite freeing.  If you think no one’s going to read your book, then you can write whatever you want, and I did. Well, to my great surprise, everyone was wrong.  Now I can look back and say with absolute certainty that the success of Snow Flower was due 100% to book clubs.  Over these past four years, I’ve visited or talked by speaker phone to something like 200 book clubs.  It’s been in these conversations—which are sometimes about the book but more often about life—that readers in book clubs have inspired me.  They’ve encouraged me to go deeper, to feel deeper, and to write deeper.

This was a great help as I started writing Peony in Love, which is a historical novel based on the true story of three lovesick maidens in 17th-century China who together wrote the first book of its kind to have been written and published by women anywhere in the world.  I suppose you could say this was another one of those subjects that “no one was going to read,” and in many ways I was going out much farther on a limb.  Peony in Love has many of the same elements as Snow Flower—footbinding, women, China, the past—but I also chose to write the novel as a Chinese ghost story, which is about as different from a western ghost story as you can get.  But more than anything, I wanted Peony in Love to be an exploration of the different aspects of love: pity love, gratitude love, respectful love, erotic love, mother love.

In my conversations with book clubs about Snow Flower, we often talked about the different aspects of love.  What I learned from women in book clubs is that nearly all our actions and relationships connect to the various aspects of love and their offshoots—hate, jealousy, envy, boredom, desire, anger, etc.  Again, these weren’t conversations about plot or characters, but about our lives: how we felt about our children, our husbands or boyfriends, friends, work, responsibilities to parents, loss, failure, birth, marriage, and death.  But it’s one thing to talk about and be inspired to write about these things and quite another to actually sit down and write about them.

A few centuries ago, a Chinese woman writer said that writers have to “cut to the bone” for their writing to be good and meaningful.  I believe that’s true.  At the same time, it’s difficult, challenging, and often grueling to do it. After all, who wants to wake up in the morning and say, “Ah, today I get to cut to the bone and go to some very dark and sad places just like I did yesterday and just like I’ll do tomorrow”?  I don’t mean to sound like a big baby, but this is hard, hard, hard, and it takes an emotional toll.  Because, you see, writers live these experiences as we write them.  They aren’t something separate from us; they are us. But again, it’s women in book clubs who’ve inspired me to do just that.  They push me.  They cajole me.  They tease me.  They make me laugh and sometimes they make me cry.  They give me inspiration and encouragement, and for that I’m forever grateful, honored, and deeply indebted.  As one of my characters might say, Ten-thousand thank yous.

A Post for Bookreporter.com

I wrote this piece about book clubs for Bookreporter.com and they have kindly allowed me to post it here too.  I highly recommend this website for information on books, book clubs, writers, and amusing publishing news.  Check it out!  And in the meantime, enjoy my trip down memory lane.

When I was a kid – oh, about forty years ago, and how scary is that? – my mom and step-father used to drag me along to their monthly “discussion group.” It was a book club made up of couples – all graduate students.  My step-father would complain all the way to whoever’s house we were going and all the way back about how so-and-so was a jackass or how the book selection was “moronic.”  My mom complained she never was as sleepy as she was at those meetings, digging her nails into her palms to stay awake when everyone was trying to prove that he or she was the smartest person in the room. I lingered on the edges, listening, and watching as everyone – as my mother has put it – “tried to fake their way into the adult community.”  This was the Sixties, so people had things like giant looms in the living room and homemade macramé for curtains.  We’d eat a potluck of tuna casseroles, hotdogs and beans, and other dishes that graduate students could afford to make. As the decade wore on, the members of the group became far less interested in discussing books like than smoking pot, drinking too much tequila, and committing adultery.  Fun for all!

Jump ahead to 1995 when my first book, On Gold Mountain, came out.  I was invited to talk to my first book club, which was comprised of parents from my son’s elementary school class.  (Let me say right here then I hadn’t known this book club existed, because my husband and I hadn’t been invited.  Not that I hold a grudge or anything.)  The women wanted to talk about the book, the characters, and the underlying themes.  But the men had something else on their minds altogether:  “How much money do you make?”  “How did you get an agent?”  “How does your husband feel about you shilling yourself?” “Did your editor help you write the book?” “Who takes care of Alexander when you’re writing?”  Yikes!

All I can say is thank God for Oprah.  She single handedly changed the dynamic of the book club.  Overnight men decided – for the most part – to stay home.  I can’t say how many book clubs I’ve visited in person in the last thirteen years, but it has to be in the hundreds.  These last three years, I’ve limited myself to visiting two book clubs a week by speaker phone.  By now, I think I’ve spoken to book clubs in nearly every state, as well as in several countries. Boy oh boy, have they changed!

I’ve visited book clubs made up of women who were either pregnant or had children under the age of two, who only wanted to talk about the pregnancies and births in Peony in Love.  I’ve talked to numerous book clubs with just mothers and daughters, and a few with granddaughters too.

I’ve seen a growth in book clubs with specialized membership: hospice-care worker, church, country club, retirement, Jewish, Mormon, lesbian, and sailing – all of them women-only book clubs.  Even the one that started in my son’s class sent the men home.  When I visited for Snow Flower and the Secret Fan, the ambiance had changed completely: better food, better wine, better discussion, more tears, and far more laughs.

This isn’t to say that women in book clubs these days don’t still drink or do some of that other stuff that I remember from my childhood.  Alcohol seems to play a major role in a lot of book clubs.  I spoke to one book club that called itself The Winos.  Another had an ongoing contest to see who could make the best margaritas.  And of course how can women gather together and not eat?  On the down side, there are still those occasional know-it-alls who try to monopolize the discussion.

The single biggest change I’ve seen and the one I love most – and maybe this will sound funny coming from a writer – is that the book is usually secondary to the experience of women talking to each other.  Often women tell me that they spend about twenty minutes talking about the book and the rest of the meeting talking about life.  I understand that.  We’re all so busy, yet we all desire companionship and a place to let down our hair.  When and where else do we get to be with other women to boast, complain, commiserate, and laugh at silly stuff?  I may be popping in to talk about my books, but what we’re really talking about is life.  I feel very privileged to get to be a part of those conversations.