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The swift, worldwide spread of SARS in recent months provides a small reminder of what life was like before modern medicine largely conquered the most lethal epidemic diseases. Small is the operative word here. Bad as the outbreak is, it pales in comparison to the experiences of our ancestors. Smithsonian writer Jennifer Lee Carrell brings us an engaging account of an early struggle against a deadly epidemic in The Speckled Monster: A Historical Tale of Battling Smallpox.

Focusing on two people who fought smallpox on two different continents during a 1721 outbreak, Carrell tells the stories of Lady Mary Wortley Montagu, an aristocrat in England, and Zabdiel Boylston, a Boston doctor. Both were early advocates of inoculation, a practice then ill-understood and feared.

The Speckled Monster, is not history for purists. As Carrell explains clearly in her introduction, she wants to tell us a “tale,” so she turns history into drama, with invented dialogue and scenes. The book is best considered a highly informed historical fiction.

Lady Montagu is a fascinating character, a strong-minded female intellectual and smallpox survivor, whose once-spectacular looks had been ruined by pockmarks. She learned about inoculation from the Turks, when her husband was ambassador to the Ottoman court. Boylston, who learned of inoculation in part from African slaves, was a more prosaic figure. But he faced the greater risk: Boston civic leaders threatened him with prosecution for attempted murder when he started his inoculations. Both Boylston and Montagu advocated introducing a mild form of smallpox virus into the skin. Their work was a crucial step in the advances that protect us today.

Although she combines fictionalized elements with the actual events that occurred, Carrell presents an intriguing story of a timely topic. The Speckled Monster is a narrative that reminds us of how far we’ve come thanks to the diligence and courage of pioneering doctors and ordinary citizens. Anne Bartlett is a journalist who lives in South Florida.

The swift, worldwide spread of SARS in recent months provides a small reminder of what life was like before modern medicine largely conquered the most lethal epidemic diseases. Small is the operative word here. Bad as the outbreak is, it pales in comparison to the experiences of our ancestors. Smithsonian writer Jennifer Lee Carrell brings […]
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<B>Young patients’ heart-rending lessons</B> Don’t even think of starting this brief but beautiful book without a box of tissues at your elbow. You’ve got a lot of crying ahead. <B>If I Get To Five</B> takes its title from the sayings of a four-year-old girl, Naomi, whom author Fred Epstein was treating for a brain cancer. "If I get to five," the little girl would tell him, "I’m going to learn to ride a two-wheeler!" Or "If I get to five, I’m going to learn to tie my shoes with a double-knot!" Epstein, who established the Institute for Neurology and Neurosurgery (INN) at Beth Israel Medical Center in New York, tells story after story of children he came to know as he was trying to save their lives. But this is more than a maudlin exercise in recollection. It is at bottom a recitation of what he has learned from dealing with these incredibly resilient children and how surroundings and attitudes can contribute to the healing process. Initially, Epstein confesses, he placed virtually all his faith in medical technology and his ability to refine and manipulate it. However, a poem from one of his young patients one who didn’t survive made him realize that imparting a feeling of love, understanding and acceptance was as vital as having and mastering all the best surgical tools. Armed with this new-found wisdom, Epstein says he designed a hospital the INN that would take the children’s feelings and wishes into account, a hospital with a resident clown, around-the-clock visiting hours, parties in the patients’ rooms and impromptu ball games in the halls. Running parallel to Epstein’s tales about his patients is an account of his own bumpy life and what it has taught him about healing. An academic underachiever, afflicted with dyslexia, depression and self-doubt, Epstein at first seemed an unlikely candidate to become a medical doctor, much less a distinguished one. But in witnessing the power of his own determination to change predicted outcomes, he became aware of that same potential power in others. It is no slight to call <B>If I Get To Five</B> a "feel-good" book. It is. But, after all, isn’t feeling good what medicine is supposed to be about?

<B>Young patients’ heart-rending lessons</B> Don’t even think of starting this brief but beautiful book without a box of tissues at your elbow. You’ve got a lot of crying ahead. <B>If I Get To Five</B> takes its title from the sayings of a four-year-old girl, Naomi, whom author Fred Epstein was treating for a brain cancer. […]
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Has it really been half a century since James D. Watson and Francis Crick announced to the world their discovery of the structure of DNA? Their breakthrough in the spring of 1953 was unquestionably one of the great milestones in the history of science. Crick famously (and forgivably) bragged in a local pub that he and Watson had discovered the “secret of life,” but even he would never have dared to predict how far this discovery would lead scientists in only 50 years. Naturally, the event is being commemorated in a variety of ways during 2003.

Watson’s new book, DNA: The Secret of Life, written in the first person although co-authored with Andrew Berry, is part of a group of interrelated celebrations of this golden anniversary. There will be a separate five-part PBS series starring Watson, as well as a multimedia companion program. The book provides details on these projects and also includes a strong Further Reading list. Watson’s new book is more than just another account of the great discovery. It is a history of the development of genetics and (inevitably) genetic engineering, told by one of the founders of the discipline. It covers the whole topic the Human Genome Project, genetic fingerprinting, genetically modified foods, even evolutionary microbiology’s search for human ancestors.

The book begins with a brief but impressively lucid history of ideas about heredity, from Lamarck’s notion of the inheritance of acquired characteristics to Mendel’s brilliant tinkering with peas in an Augustinian monastery. Like the rest of this spirited book, the section on early history is brought to life with telling anecdotes. We observe how Mendel’s weight gain curtailed his fieldwork. We learn about the “Hapsburg lip,” the distinctive physical trait that resulted from unwise inbreeding among European monarchs. The book is wonderfully unpredictable, and the whole discipline of genetics is presented in human terms, not in biochemical formulae.

Watson has never been accused of undue modesty, and in this book he doesn’t pretend to offer an objective account. He dismisses Jeremy Rifkin, one of the primary opponents of genetically modified foods, as a “professional alarmist.” He complains about the “knee-jerk, politically craven attitudes and even scientific incompetence” of government regulatory agencies that are opposed to genetically modified foods. Thrilled with the field, its history and its implications, Watson sums up his Dr. Frankenstein hubris by describing his response to the initial discovery of DNA’s structure: “We were no longer condemned to watch nature from the sidelines but could actually tinker with the DNA of living organisms, and we could actually read life’s basic script.” In case this topic seems daunting to you, note that DNA is designed for the nonspecialist. No technical terms are used without being fully explained, and their first mention is boldfaced in the index in case you want to refresh your memory later. You probably won’t even need to. The writing here does the work for you, as it ought to do in popular nonfiction. And this book will be popular. The authors sum up the importance of their volume and their topic in a single sentence: “DNA is no longer a matter of interest only to white-coated scientists in obscure university laboratories; it affects us all.” Michael Sims’ new book Adam’s Navel: A Natural and Cultural History of the Human Form will be published by Viking in August.

Has it really been half a century since James D. Watson and Francis Crick announced to the world their discovery of the structure of DNA? Their breakthrough in the spring of 1953 was unquestionably one of the great milestones in the history of science. Crick famously (and forgivably) bragged in a local pub that he […]
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In contrast to most writing on science and medicine targeted at the general public, Darshak Sanghavi’s A Map of the Child: A Pediatrician’s Tour of the Body is an example of expert storytelling a true page-turner. A pediatrician and medical researcher, Sanghavi has worked chiefly at Boston’s Children’s Hospital, but also in rural Appalachia, Japan, Kenya, Peru and in Navaho country for the Indian Health Service. His profession has provided him with a wealth of illuminating stories that he weaves together seamlessly in his first book.

His wife’s positive pregnancy test, confirming that he was to become a father, influenced Sanghavi’s decision to write A Map of the Child. The narrative is structured as a guide to the organ systems of the pediatric body lungs, heart and brain, for example. It explains how they develop, explores the things that can go wrong with them and shows how those things can be made right. Although the child is the major focus, Sanghavi takes a broader view, writing “with the hope that understanding medicine and disease can itself be healing.” That understanding can improve the odds of having a healthy newborn, as well as comfort a family dealing with a child’s illness.

Sanghavi celebrates the medical advances that have saved the lives of countless children. Among the many examples he describes are surfactants, super-slippery substances that now rescue most of the more than 20,000 babies born each year with immature lungs. But he’s also aware of the limitations still to be overcome: bone marrow transplants can work miracles, although only when the match to the recipient is near-perfect. One of the book’s most moving narratives relates the death of a teenager whose transplant didn’t work.

Sanghavi’s broad perspective encompasses a range of topics, from anatomy and physiology to such controversial subjects as circumcision, vaccination for chicken pox and alternative medicine. Compelling, thoughtful and informative, A Map of the Child deserves a wide audience. Albert L. Huebner, a physicist, writes on science for numerous publications.

In contrast to most writing on science and medicine targeted at the general public, Darshak Sanghavi’s A Map of the Child: A Pediatrician’s Tour of the Body is an example of expert storytelling a true page-turner. A pediatrician and medical researcher, Sanghavi has worked chiefly at Boston’s Children’s Hospital, but also in rural Appalachia, Japan, […]
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She thought she had mono. Then she decided she was bipolar. To her disgust, a famed New York City neurologist told her that she simply worked too hard and drank too much.

Susannah Cahalan’s mix of Google-search self-diagnosis and hit-and-miss expert opinion might have been comical if her situation hadn’t been so dire. At the age of 24, Cahalan, a reporter for the New York Post, began feeling less and less herself, then had a seizure, and then ended up in the hospital for a month, out of her mind for most of that time, while a small army of doctors and medical researchers tried to figure out what was wrong with her.

“It was one of those things that wasn’t completely obvious at first,” Cahalan says, remembering the onset of her mystifying disease during a call to the apartment in Jersey City she shares with her boyfriend Stephen, one of the heroes of Brain on Fire: My Month of Madness, her book about this harrowing experience. “Maybe if I had been working a more stable or less exciting job, I would have been more aware of what was going on. But because I was working at the New York Post and there are so many highs and lows to journalism, I wasn’t aware of the fluctuations.”

Stephen (her boyfriend of just six months at the time and a colleague at the Post, where she had begun working as a “copy kid” at 17) and her estranged parents, however, had become increasingly alarmed by her behavior just before her seizure. Later they would all become key informants as Cahalan tried to piece together what had happened to her during her month of madness.

“It’s so hard for me to get to that person again,” Cahalan says. “I did a lot of yoga trying to access these hallucinations and these lost memories. . . . I wrote by hand, which I thought would maybe help me better access these things. I do remember things, but I don’t know if it’s because I’ve spent so much time writing about them that I’ve created these memories.”

"People who don't have a diagnosis have to be their own advocates. It's important to question medical authority."

So Cahalan’s efforts to write Brain on Fire became an attempt both to reconstruct how she became the crazy person she briefly was and to understand the science that led eventually to a successful diagnosis. Early drafts of the book, Cahalan says, were very “science-y.” The published book tends—reluctantly, she says—more toward memoir. Readers will likely find it a swift read, an intriguing mix of scientific detection and personal story. Cahalan includes excerpts from her medical records, from videos of her bizarre behavior in the hospital, and from her follow-up interviews with the two doctors at the University of Pennsylvania—Dr. Souhel Najjar and Dr. Josep Dalmau—who cracked her case.

Diagnosing her illness required a battery of sometimes redundant tests including CAT scans, blood tests, MRIs and a gruesome-sounding brain biopsy. Eventually, Cahalan became only the 217th person to be diagnosed with anti-NMDA receptor autoimmune encephalitis, a rare form of autoimmune disease.

Cahalan says one of her hopes is that Brain on Fire will in some measure help people with undiagnosed conditions and raise awareness about autoimmune diseases. “The brain gets all the attention,” she says. “But when I was researching the science for the book, I realized we are just at the beginning of understanding how important the immune system is. Auto­immune disease is an amazing, emerging field of study. Right now 50 million people in the United States have an autoimmune disease. They’re especially common in women, which is a mystery. The research that’s being done now is basically blurring the lines between immunology, neurology and psychiatry. It’s very exciting.”

Treatment for Cahalan’s disease was considered experimental at the time. It involved a regimen of nearly 20 intravenous immunoglobulin (IVIG) injections at $20,000 a pop. The total cost of her hospitalization and treatment? Something to the north of $1 million, she says.

In the final section of Brain on Fire, the section Cahalan found most challenging to write, she describes her long recovery and reflects on the physical and emotional challenges she faced after she left the hospital. On the plus side, she has grown closer to her father, who was distant from her after her parents’ bitter divorce. For the length of time she was in the hospital, her parents united to become her chief advocates. “People who don’t have a diagnosis have to be their own advocates. It’s important to question medical authority. I couldn’t be my own advocate in the hospital because I couldn’t be there for myself. But my parents were.”

Cahalan’s boyfriend Stephen was her “rock in the hospital. The fact that he came every day when we’d only been dating about six months was amazing.” But trouble loomed when she came home to recover. “I was dead set on moving ahead. I was getting better. I was back at the Post. Everything seemed fine, but he knew I still wasn’t 100 percent. It was a scary experience for him. I think it changed him and he became a different person. Now it’s been three and a half years since I was in the hospital and we’ve worked that out.”

Still, the question of how fully she has recovered remains. When her doctors finally reached the correct diagnosis, they told her that treatment would bring her back to about 90 percent of normal.

“It’s hard for me to say if I’m 100 percent recovered,” Cahalan says. “I know I’m different from the person I was before and I know that has something to do with my illness because it was a huge life experience that I think about every day. But I was 24 then, I’m 27 now. I don’t know how much of my change is due to getting older and being in different life circumstances and how much of it has to do with surviving this illness.”

She thought she had mono. Then she decided she was bipolar. To her disgust, a famed New York City neurologist told her that she simply worked too hard and drank too much. Susannah Cahalan’s mix of Google-search self-diagnosis and hit-and-miss expert opinion might have been comical if her situation hadn’t been so dire. At the […]
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Best-selling journalist Alexandra Robbins has gone undercover again, exploring the world of The Nurses: A Year with the Heroes Behind the Hospital Curtain. While investigating a profession she calls a vital and grossly undervalued "secret club," she has unearthed a multitude of no-holds-barred truths and anecdotes revealed in interviews with nurses across the country. Now that Robbins' research and writing are complete, she reflected on the experience, explaining how this latest project surprised and changed her.

You’ve written previous books about geeks, overachievers and sorority sisters. What prompted you to write about nurses?
Nurses had been asking me to write about them for years. They wanted to get their views and stories across in a way that both nurses and the general public would find entertaining. I had initially resisted because I was on the education beat. But once nurses began telling me their stories, I was hooked. I think every nurse in the world has some incredible stories.

You write that “contemporary literature largely neglects” nurses. What’s the reason for that neglect?
My guess is that people make assumptions based on medical TV shows, which get the picture wrong. I don’t think the general public realizes just how much nurses actually do and how vital they are. They’re not just the folks who administer medicine, flitting in the background as the doctor pines by the patient’s bedside (“ER,” “Grey’s Anatomy,” etc.). The nurses know patients far more intimately than doctors do. They’re skilled and educated; they’re scientists, detectives, liaisons, advocates, teachers, diplomats, and so forth. But TV would have us believe they’re “Yes, Doctor”ing background minions rather than a critical part of the healthcare team.

"Nurses’ voices mostly go unheard, and this was an opportunity for them to get their messages across—their hopes, fears, concerns, frustrations, joys."

What was your most surprising or shocking discovery as you researched this book?
I was shocked repeatedly throughout my reporting. There are so many things that people can do to get themselves and loved ones better care—and in some cases lifesaving moves—in the hospital. But if I were to pick one shocking item, I’d say I was most surprised by some of the doctor misbehavior that goes on behind the curtain. Many doctors are wonderful, of course. Some, however, have done some pretty staggering things to patients (twisting nipples while patients are under anesthesia, pushing them to get surgery they don’t need, ignoring Do Not Resuscitate orders) and to nurses (throwing scalpels and other instruments at them, ignoring their pleas that a patient needs help, groping them, berating them). That was pretty eye-opening.

What do you think is the most common misconception about the profession?
I think the biggest misconception is that they aren’t a major part of the healthcare team. As one nurse told me, “We are not just bed-making, drink-serving, poop-wiping, medication-passing assistants. We are much more.”

Your book features profiles of four nurses and gives readers a “you-are-there” look at their experiences over the course of the year. What research process did you use to capture their stories? Did you shadow them on the job?
The process included interviewing, shadowing, and even some undercover reporting. I wrote the book this way so that it would have a fun, beach-read kind of feel for both nurses and for the general public. That’s the kind of nonfiction I like to read, anyway.

You use pseudonyms for these four nurses, and don't identify where they live or what hospitals they work for. Was this a difficult decision to make? Did you know from the start that you wouldn't be able to use identifying details?
Oh sure, I knew from the start. I was asking nurses to peel back the curtain to show us things that hospitals don’t want people to know. For the nurses to be able to share freely, they had to trust that their identities—and those of the doctors, other nurses, etc. in the hospital—would be protected. I have offered sources this kind of privacy in all of my books, from Pledged on forward. It’s important that my “main characters” are completely open, without fear of reprisal, so that they can share honestly and thoroughly with readers.

How did you go about winning the trust of those you profiled? Were nurses eager to share their stories? Were some reluctant to talk to you for fear of reprisals?
All of the nurses I spoke to were eager to share their stories; I had more nurses who wanted me to follow them as “main characters” than I had room for in the book. Nurses’ voices mostly go unheard, and this was an opportunity for them to get their messages across—their hopes, fears, concerns, frustrations, joys. I guess by now I have a reputation for protecting my sources, so trust never came up as an issue.

I think The Nurses would be fascinating and helpful to nursing school students, but I also worry that some of the harsh realities you describe might be discouraging. What advice do you have for those about to enter the field?
You make a good point; someone described the book as a One L for nurses. The Nurses makes clear, I hope, that even though nursing is not an easy job, it’s a rewarding, fulfilling, life-changing job that nurses feel passionately about. They told me repeatedly, “Nursing isn’t a job. It’s who I am.” I think students who want to go into nursing already feel that pull. There are challenges to every job, but nursing school students are well-prepared to anticipate them and to manage them. And the incredible moments of connection or healing that warm their hearts really carry them through their days.

I love all of the testimonials at the end of the book from nurses who adore the profession, but one that they told me frequently was along the lines of “I make a difference in someone’s life every working day.” How many people can say that? That’s just awesome.

One reason I didn’t romanticize the profession is because nurses need people to help them fight for better working conditions. We all do, actually, because better nurse environments (especially better nurse:patient ratios) translates to fewer patient deaths, infections, complications, falls, etc. But many hospitals haven’t been willing to hire more nurses and treat them right. How can we improve hospital care if we don’t talk about the issues? Glossing over them doesn’t serve anyone.

My advice to nursing students is to remember that there are many, many different types of nursing jobs. Nurses are everywhere—not just in hospitals. They can talk to seasoned nurses to try to figure out which nursing path is right for them.

How is your experience writing this book likely to change your thoughts when you enter a hospital, either as a patient or a visitor?
I’ve always brought treats for and expressed gratitude to nurses anyway, but now I want to give them all hugs, too. They are truly amazing. And the tips they gave me for my own or my loved ones’ hospital stay are invaluable. I have a list now that I pulled from the book that I will take with me whenever I visit a hospital, because you never know which tip will come in handy.

RELATED CONTENT: Read our review of The Nurses.

Author photo by David Robbins.

 

Best-selling journalist Alexandra Robbins has gone undercover again, exploring the world of The Nurses: A Year with the Heroes Behind the Hospital Curtain. While investigating a profession she calls a vital and grossly undervalued "secret club," she has unearthed a multitude of no-holds-barred truths and anecdotes revealed in interviews with nurses across the country.

Sarah Ramey’s The Lady’s Handbook for Her Mysterious Illness is at once a comforting embrace and a call to arms for people (mostly women, alas) who experience mysterious chronic illnesses. The book is a figurative finger, trembling with rage, pointing directly at the deeply held sexism at the root of so many problems in American health care. It’s also a funny, honest, often beautiful recounting of the author’s personal journey through illness after illness after illness, during which she maintains her hope and optimism. 

Ramey spoke with BookPage about her powerhouse memoir in a call to her home in Washington, D.C.—an auspicious conversation, considering that getting her book to publication has been such an astounding journey, thanks to years of health challenges. “I wrote it over a 15-year period,” she says. “It’s so funny—someone told me I’m the most overdue author they’ve ever encountered!”

“It became clear that mine was not a psychological condition. It was a problem in the psyche of the doctors—the programmed assumptions, unconscious bias, prejudice against this type of patient, particularly against women.”

That’s impressive in its own way, of course, but Ramey used the delay as an opportunity for more research, and thus more potential for greater impact. “In the beginning, nobody was talking about [the things I was writing about],” Ramey says. “I don’t think the microbiome was even mentioned in the original proposal, and gut health was not yet a common term . . . but as every year has gone by, it’s come more and more into the mainstream. . . . I learned so much in that interim period.”

The author has conducted an enormous amount of research into the conditions common to what she calls “WOMIs”—a “woman with a mysterious illness” who is “exhausted, gluten-free, and likely in possession of at least one autoimmune disease. She is allergic to . . . (everything), aching from tip to toe, digestively impaired, and on uneasy terms with her reproductive system. She is addled, embarrassed, ashamed, and inflamed. She is one of us.”

Clearly, being a WOMI isn’t an easy existence, not least of all because the inability to diagnose and prescribe a sure fix for these conditions typically leads to skepticism and dismissal from medical practitioners. And it definitely doesn’t help that WOMIs may not always look sick. The number of times Ramey (who has gyno-rectal disease, gut issues and more) has been dismissed, doubted, scoffed at and much worse—botched surgeries and unapologetically cruel doctors, for starters—is staggering.

But Ramey is an engaging and witty narrator, and readers will nod along with her as she describes the arc of her reactions to such treatment. In the beginning, she says, “I was a lot nicer to doctors” who treated her poorly because—well, she needed them. But as time went on and her motives and sanity were repeatedly questioned, Ramey got angry. She began speaking up for herself, and she began writing the book so that other women like her wouldn’t feel alone. (And these women are legion. Autoimmune illness numbers have tripled in the last 30 years.)


ALSO IN BOOKPAGE: Read our review of The Lady’s Handbook for Her Mysterious Illness.


The author says she believes the American health care system can and must change. “It became clear that mine was not a psychological condition. It was a problem in the psyche of the doctors—the programmed assumptions, unconscious bias, prejudice against this type of patient, particularly against women,” she says. “If you can’t prove what’s wrong with you, it’s much more likely you will get swept away. That is part of the culture, and it’s wrong, and it’s very difficult to combat as a single person in the moment because of the power dynamic.”

For Ramey, changing her mindset has been a key part of her adjustment to living with chronic illness. She writes, “In the alternative medicine world, following your bliss is highly correlated to healing.” Thus, rather than pushing through the pain and trying to get better faster, she’s engaged in “a lot of phases of trying to figure out how to make my life as good as it could be within really tight parameters.” That’s included adopting a cat (who was “right here looking at me encouragingly” during our interview), as well as inhabiting her singer-songwriter alter ego, Wolf Larsen, whenever she can.

Ramey says she hasn’t performed in the last couple of years because she’s been having “surgeries and interventions to reconstruct and make things better” in her poor, beleaguered pelvis, “but when things quiet down and this overdue book is out, I’m going to record an album I’ve had written for quite a while.”

She adds, “I’m a hope-monger! I used to say every year, ‘This is the year I get better and do this many shows.’ I don’t do that anymore. I now accept that I’m a studio musician I’m not going to perform live very often, and that’s fine.” (However, her all-female band, GlitterSnatch, does plan to perform at a couple of her book events.)

And when it comes to The Lady’s Handbook for Her Mysterious Illness, Ramey says, “I’m hoping that it can help change the conversation a little bit, the dynamic between the patient and the people around them. A main goal for me is to be another person helping to make this invisible problem visible.”

Author photo © Julius Schlosburg.

Sarah Ramey talks about the intersection of medicine and misogyny, laid bare in her powerful (and, against the odds, hilarious) memoir.

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