Exciting News and Virtual Book Tour Events

The controversy over chronic Lyme disease and the way social media has so greatly influenced the trajectory of patient advocacy are issues I explore in detail in In the Kingdom of the Sick, so I am thrilled that Dorothy Leland posted a review of the book over at LymeDisease.org today. Please click on over and check it out, especially if you or someone you know has been impacted by Lyme disease.

In other book news, I have some exciting announcements:

I will be appearing on NPR’s Fresh Air with Terry Gross. I am a huge, huge fan of this show and am so excited for this opportunity. It looks like my segment will air Tuesday, April 16th, but I will post specific details on how to listen and confirmation of this as the date approaches.

will be taping my reading event at Brookline Booksmith on Wed, April 17th, at 7pm. If you’re local, Brookline Booksmith is one of the best independent bookstores in the Boston area and a great venue, and I would love to see you there! (Be advised events take place on the lower level of the store.) Please also pass along this event information to anyone you know in the Boston area who might be interested.

And since we’re talking dates, a reminder that I am also doing an author event at Northeastern University at noon on April 11, if a daytime event is more convenient for you.

Thanks so much!

Book Review—Balancing Diabetes with Pre-existing Diabetes: Healthy Mom, Healthy Baby

I don’t even remember how I first stumbled onto Cheryl Alkon’s blog, Managing the Sweetness Within a few years ago. After all, I wasn’t a type 1 diabetic, nor was I undertaking a pregnancy with diabetes. But I know why I kept coming back anyway: her humor, accessible tone, frank candor, and overall pragmatic, down to earth attitude.

I totally dug her style, and since we’ve become friends in real life since I can attest to the fact she’s that funny and refreshing in real life. When she first shared her book proposal with me, I was so excited—I could see her book on managing pregnancy with diabetes unfolding, and I knew it was a necessary resource.

I am proud to see her project come to fruition, not because she published a book (though that is a feat all by itself) but because she published such a good book. Balancing Pregnancy with Pre-existing Diabetes: Healthy Mom, Healthy Baby, which pubs this week, is a comprehensive and essential guide to planning and living through a pregnancy with diabetes.

With the meticulousness of a seasoned professional journalist (she went to Columbia Journalism, after all), Cheryl interviewed dozens (seriously, dozens) of patients with diabetes, as well as physicians and other experts, to offer hands-on advice and information. In addition to anecdotal experience, the book is crammed with well-researched facts and resources. From pre-conception blood sugar control to the intricacies of each trimester to the delivery and beyond, Cheryl covers all the bases.

What’s more, she is diligent about including multiple perspectives. Struggling with infertility in addition to diabetes? She has tons of tips and resources. Contemplating an alternative birth plan or curious if a doula might work for you? She has plenty of information on that, too.

Just need some encouragement that a healthy pregnancy and a healthy baby are indeed attainable? That’s where Cheryl’s veteran experience as a type 1 diabetic and the many patients she interviewed prove so valuable. It’s one thing to hear from doctors or disease organizations what is possible, but it’s another altogether to hear from people who’ve actually walked the walk: they’ve dealt with first trimester lows, third trimester complications, and figured out the best way to deal with their insulin pumps during labor and delivery. They’ve juggled breast-feeding and fluctuating insulin needs, and know how (and when) to advocate for themselves.

But what I love is that it isn’t just about the content. Cheryl brings that same accessible, engaging tone she has on her blog to the book, evident from the opening lines of the first chapter:

“As a woman with long-term type 1 diabetes, I know this disease intimately. Reading this with type 1? Hi—you are my people. Type 1 is very-much-insulin-dependent, ain’t-going-away-with-weight-loss-or- after-the-kid-is-born diabetes. Type 1, despite what much of the mass media or well-meaning but clueless people will tell you, is a separate condition from the far more common type 2 diabetes or gestational diabetes.” (p.3)

But don’t worry-this book isn’t exclusively for T1s. If you have type 2 diabetes , there is plenty of material to meet your needs, and its conversational tone makes even the most serious subject matter in the book seem less daunting.

As a writer who published a book on chronic illness in young adults because I felt there was nothing out there that addressed that audience, I really appreciate a book that fills a true void. For the many readers out there contemplating a pregnancy with diabetes or managing one right now, this is the definitive resource for you.

Women and Health Care: Are We Feeling Better Yet?

Since writing and publishing Life Disrupted, I’ve paid special attention to books and anthologies that deal with the patient narrative. (I have a more in-depth exploration of narrative medicine and a list of suggested titles if you’re interested.) This spring I reviewed Everything Changes, a book about young adult cancer patients, and found the similarities between young cancer patients and young adults with chronic illness compelling.

More recently I had the chance to read
Are We Feeling Better Yet? Women Speak About Health Care in America
, edited by Colleen McKee and Amanda Stiebel. With a forward written by my friend and colleague Jenni Prokopy of ChronicBabe and a submission from one of my favorites, Paula Kamen, I was especially excited to jump into this diverse collection of essays. Here again I found the universal questions and insights that came out of very different experiences with illness and health care to resonate the most.

When I hear the phrase “health care in America,” I instinctively expect a lot of facts and figures: how much chronic disease costs have risen, insurance premiums and co-pays, political debates over mandates or Medicare reimbursements, how many Americans remain uninsured or underinsured. Let’s face it, the system is confusing quagmire of contradiction and disparities, and much of what we read about is analysis or opinion about these issues.

While facts and figures are seminal to health care reform, I have always believed in the equally compelling power of the personal narrative. Regardless of differences in diagnoses, treatments, ethnicity or geography, these women’s stories all reveal frustrations, challenges, and insights that speak to the central question linking these 21 essays together: Are we feeling better yet? As the editors write in the introduction, “To even to begin to answer that question, the patient’s voice has to join the conversation. She can’t be entirely spoken for by charts, case studies, shiny magazine, politicians, physicians, pharmaceutical reps. For genuine healing, we must tell our stories—and hear them—in a way that is honest and real, even when the truth is ugly, unladylike, and sometimes, not even nice.”

It was with that expectation of unflinching narrative that I dove into the essays, and as a patient and a writer, I was not disappointed. I’ve come to expect topics like poverty, racism and health disparities, and inefficiency and bureaucratic stalemates to be a large part of the patient experience and a necessary part of any discussion. However, I was glad to see this (unfortunately all too familiar) terrain handled so well, revealing nuances to these universal problems that remain in my mind.

Terri Griffith’s wry rumination on “free care”—a merry-go-round of pushing papers and passing the buck that left her without therapy for depression and wasted a lot of time and resources, made me clench my teeth in frustration for her. The staggering wait times (up to eight hours) and dilapidated conditions Birgit Nielsen witnessed at a Los Angeles county clinic for women was bad enough; the shocking racism her doctor displayed towards Spanish-speaking immigrants and the preferential treatment her white skin afforded her was worse. Based on these experiences, we certainly have a ways to go in terms of providing quality care to everyone.

In “A Slight Case of Hypomania,” Anita Darcel Talyor writes about living with mental illness and the constant choice between paying for treatment or paying to live her life, between remaining untreated or living in an overly medicated, dulled state. But her personal negotiations give rise to larger questions:

“Sometimes I wonder if normal isn’t a myth, a state of magical realism, a place of the imagination against the backdrop of lies. Is normal a thing of the middle class suburban family? Is it as chic as the gay city dweller? Is it middle American red or coastal blue? Is normal the adjective of the elusive mainstream? Can I be normal with a diagnosis? Is it normal to be educationally elite yet live in poverty? Can I be normal if I am fat?” (58).

Moments like these, when the many universal complexities of the patient experience are laid bare, are the ones that resonate most with me. I’ve heard the policy wonks, I’ve read the Op-Eds, and I’ve and stared at the numbers. They are important, but they don’t get at my core like these moments do. Whether it’s receiving a life-altering diagnosis or a delayed diagnosis, having to choose between personal belief systems and those of the medical establishment, or being privy to the insider survival tricks and processes of cancer treatment, the personal insights these writers provide do much to illustrate where we are—and more importantly, where we have to go.

Some essays speak more directly to the question of “Are we feeling better yet?” than others, and personally those are the ones I enjoyed the most. I started the book wondering if it was merely a foregone conclusion that we can’t really be feeling all that better yet; after all, if the system was working well we wouldn’t need analysis and Op-Eds and consensus talks. But I finished it feeling encouraged. These stories aren’t always pleasant or easy to read, and that’s exactly why we need them. We can learn from them and draw from them as empowered patients and advocates…and that’s certainly a step in the right direction.

National Young Adult Cancer Awareness Week

It’s spring, which means the disease walk-a-thons, bike races, charity walks, and general awareness campaigns tend to kick into high gear.

As a rare disease patient, I watch these mobilizations with a mix of curiosity, appreciation, and intrigue. That these populations are big enough to sustain such events is, of course, a double-edged sword: so many people are impacted by them that there is strength in numbers, but that those numbers are so high is the very reason for the mobilization.

I had Rare Disease Day, and that was a start for me. People I love (or the people other people in my life love) live with all sorts of conditions, so I find myself sponsoring things like MS bike rides, arthritis or heart disease walks, or diabetes or specific cancer awareness events more and more. I’ve done the charity walk for Children’s Hospital Boston for several years.

But it’s the first year I’ve been aware of the existence of Young Adult Cancer Awareness Week, and I’m interested in it for many of the same reasons I wrote about for Rare Disease Day and many of the same reasons I wrote a book about chronic illness in younger adults:

This is a population whose needs are both unique and overlooked. There are thousands of types of cancer, but the larger universal experiences of getting diagnosed with it and living with it as a young adult are significant. From access to care and early detection to issues of employment and family-planning, these challenges affect so many younger adults across the country.

I had the chance to speak in person with Kairol Rosenthal last week, and it’s largely due to her advocacy that YAWC is on my radar this week. For a more in-depth discussion of young adults with cancer and the similarities they share with young adults with chronic illness, see my review of Rosenthal’s new book, Everything Changes.

Book Review–Everything Changes: The Insider’s Guide to Cancer In Your 20’s and 30’s

Clearly I am passionate about the needs of younger adults who juggle typical age-related challenges like dating, marriage, building a career and starting a family—all with the added complication of illness.

So when I heard about Kairol Rosenthal’s new book, Everything Changes: The Insider’s Guide to Cancer In Your 20’s and 30’s, I was excited to see someone else focusing in on the younger adult population…And interested to see where the similarities and differences in emotions and experiences between patients in her book and those in Life Disrupted emerged.

“But you’re too young for this!”

How many times have you heard this? Whether it’s a physician, another (older) patient, or even a well-intentioned friend or relative who says it, the effect is usually the same: it dismisses the reality that patient is experiencing. When it comes to diagnosis, that kind of attitude can be dangerous. When it comes to diagnosing cancer in young adults, it can be lethal.

One of the things I appreciate most about Rosenthal’s book is her blend of personal and patient insight—she traveled around the country taping interviews with many young adult cancer patients—with factual urgency. Young adult cancer patients are typically diagnosed later and at more advanced stages because they are “too young” for cancer, and some 70,000 young adult cancer patients are diagnosed each year.

Rosenthal lets these patients tell their stories in their own words, and steps in to include her own observations and experiences in each chapter. From navigating the dismal world of health insurance to employment challenges to the need to advocate for your own health, Everything Changes covers the topics most salient to cancer patients at this stage in life.

On dating, one young woman said, “When I was first diagnosed, I wondered if guys would be disgusted knowing there’s a tumor inside of me. I felt tainted. Of course, I didn’t want a guy to go away when he found out I had cancer, but I felt like it would be natural if he did. Who signs up for that?” (47)

Through these patients, we see examples of people who remained despite what they did not sign up for, and relationships that could not stand the strain. Rosenthal’s own ultimate love story gives solid context—it inspires yet does not overwhelm.

On the idea of surviving, a male patient said, “Once you’ve had cancer, people like to think of you as a superhero, like Lance Armstrong, but I’m no Lance Armstrong. I don’t go for that image. Cancer recovery has become so romanticized, as if this one event suddenly made me a whole different person. I don’t think that’s the case.” (94)

Of course, these are just snippets of the many conversations about family, marriage, death, health care, and other topics that fill the book. Each story is as compelling as it is unique, yet Rosenthal’s voice carries the book. Upon receiving her diagnosis of thyroid cancer she writes,

“My first thought was the opposite of ‘Why me?’ Why not me? Why a fifty-five-year-old truck driver, a nine-year-old in a pediatric unit, or my seventy-seven-year-old grandmother? Of course, me. Why the hell not me? This life is breakable, and I’m no more immune to pain and suffering than the next person.” (3)

Perhaps it is this attitude that I appreciate the most, one that is devoid of self-pity, one that seeks to bring truth to the reality of so many patients for whom the word “survivor” is a loaded term, who do not couch suffering or pain or fear in palatable ways when sometimes they aren’t meant to be palatable.

That isn’t to say the stories aren’t encouraging, insightful, or ultimately inspiring—they are, because they are real. They are gritty, honest, often funny, and more than anything else, they represent the individuality of the patient experience. This is something Rosenthal is keenly aware of, and her awareness—respect, really—of this individuality allows the diverse reactions and adaptations to living with cancer to co-exist so well.

Despite the differences in diseases and outcomes, I found so many interesting parallels between these patients the ones I know from writing about and living with chronic illness. If you’re a young adult cancer patient or know someone who is, you will really benefit from this book and all its resources. More than that, though, the book puts out there a central truth that not enough people know:

There’s no such thing as “too young” for cancer.

Among the many universals in this book, I think many of my readers can relate to that sentiment all too well.