Category Archives: Writing

2008’s Year in Review and Looking Forward

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This time last year I was homebound and pretty sick, and all I could do was think about how glad I was to not be in the hospital. Apparently not much changes, because it is New Year’s Eve and I find myself several days into a battle to avoid being an inpatient—and extremely grateful to be able to type from home.

But to say not much has changed in 2008 would be a big understatement, both personally and publicly. Looking back over this year’s posts and this year’s headlines, I find that perhaps inevitably, there is some overlap.

Of course, 2008 was the year of my first book, and I found myself thinking a lot about writing, language, and the power of narrative medicine. I did lots of things I’ve never done before, like radio interviews and book readings, and some things that were all too familiar (hello, canceling highly anticipated plans due to various plagues…). Now, I’m looking towards the next big project.

In the larger world of health care, health policy and economics, there was the same blend of highs and lows that made their way into my world. Massachusetts made great strides in terms of universal health care (despite some complications), and 2008 was an election year in which health care and the female vote mattered. As exciting as moving in a new direction is, of course it’s also tempered by serious economic woes, job loss, and even everyday expenses are more of a burden.

Whether it’s hope in the future president, hope for a new job or a steady job, hope for health insurance or housing, hope for a family or a diagnosis or simply the hope for more good days than bad, may 2009 be a year where we hold onto the highs and where the lows even out, a year of hope for our futures.

(As a seasonal aside, visit me here for simple tips for a healthy New Year!)

It’s Always the Season for Books, Part 2

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So I’ve talked here about why books make great holiday gifts. To help give you some ideas, Moon Rat has a fantastic, detailed list of “best-ever” titles over at Editorial Ass. You can also consult Salon’s Best of 2008 book list, or the NYT’s 100 notable books of 2008, among many others.

So what’s my contribution to the book-buying suggestions? I thought I’d try out a different approach. My very random, totally un-scientific, un-researched and completely off-the-cuff list of suggested titles is just that—books that immediately come to mind, with no consulting my bedroom bookcases or bestseller lists. It’s neither exhaustive nor exclusive, but maybe that’s a good thing. After all, if these titles are at the front of my mind right now, with 700 pages of student writing to comment on, freelance deadlines, and a respiratory infection, they must be memorable, right?

Nonfiction (memoir and narrative):
The Obvious: Eat, Pray, Love by Elizabeth Gilbert
A Three Dog Life by Abigail Thomas
The Sky Isn’t Visible from Here by Felicia Sullivan
Mountains Beyond Mountains by Tracy Kidder
Friday Night Lights by H.G. Bissinger
In Cold Blood by Truman Capote
Into Thin Air by Jon Krakauer
The Spirit Catches You and You Fall Down by Anne Fadiman
I Remember Running by Darcy Wakefield
All in My Head by Paula Kamen
Marley and Me by John Grogan

(Note: Though a couple of titles cross over, please see my previous post on narrative medicine if you are interested in a more complete list of books about medicine, illness, etc.)

Food:
The Obvious: In Defense of Food by Michael Pollan
Animal, Vegetable, Miracle by Barbara Kingsolver
Garlic and Sapphires by Ruth Reichl
The Man Who Ate Everything by Jeffrey Steingarten
Fast Food Nation by Eric Schlosser
Beef: The Untold Story of How Milk, Meat, and Muscle Shaped the World by Andrew Rimas and Evan Fraser (Note: I have only just started this, but the author is local and a friend of mine so it’s on my mind)

Miscellaneous:
Eats, Shoots & Leaves by Lynne Truss
Freakonomics by Steven Levitt

Fiction:
The Obvious: The Interpreter of Maladies by Jhumpa Lahiri
The Emperor’s Childrenby Claire Messud
Runaway by Alice Munro
Case Histories by Kate Atkinson
Water for Elephants by Sara Gruen
The Poisonwood Bible by Barbara Kingsolver
Kissing in Manhattan by David Shickler
The World According to Garp by John Irving
Prep by Curtis Sittenfeld
Namesake by Jhumpa Lahiri
Little Earthquakes by Jennifer Weiner
Lost City Radio by Daniel Alarcón

Someday, I’ll be good and post a more complete list with commentary and all that, but right now a different stack of writing awaits me. Please feel free to throw in your favorite or current reads in the comments section, and remember—books make wonderful gifts!

It’s Always the Season for Books

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I hate to shop. When compared to all the other things I could be doing, the thought of spending time wandering around crowded stores seems incredibly inefficient to me, and I don’t usually want the item in question enough to warrant a trip. (Of course I also bring student papers to hair appointments and squeeze my laptop open on the subway, so clearly I have some issues with downtime.)

While my dislike of shopping is year-round, it kicks into high gear near Christmas; my proudest shopping moment of last year’s holiday season was when I realized I got every single gift I needed online, minus one.

I do have one huge exception, though. I love buying books and being in bookstores, and if left un-chaperoned, I could easily spend far too many hours and too much money. My husband fully supports (encourages, even) my book-buying binges, but I like it when we go together because I’m more conscious of that wily little word “moderation.”

I know the economy’s in terrible shape and holiday budgets are much tighter for most people, and I have a solution: Buy books. Seriously. They are affordable, durable, and can be used over and over.

Now, I know I am biased because I recently published my (affordable paperback)book Life Disrupted. But I’m making this plea not as a book author but as a lifelong book lover, someone whose favorite childhood Christmas present was the Little House on the Prairie boxed set of books, and who got a floor-to-ceiling bookcase for a 10th birthday present. I cannot go to sleep at night without reading, if even for 10 minutes, and I cannot leave the house without at least one book tucked into my briefcase.

The only gift I always buy in person for my nieces are books, and my gift to my oldest niece each Christmas is a hardcover book with an inscribed note. My brother told me she makes him read them to her throughout the year.

So buy books this year, and maybe even start a new tradition. What’s more, whenever possible support your local independent bookstores. They are more than simply places that hold shelves of books; between readings, lectures, and other literary events and book clubs, they foster a sense of community in neighborhoods. Like many independent retailers, they need our support and patronage more than ever right now.

For local readers, I just scored several great books on the sale table at Brookline Booksmith, and my two local favorites, Porter Square Books and Newtonville Books (both of which were awesome in supporting this local author with events) have tons of interesting readings and events this December and offer good discounts.

Obviously I believe books are a perfect gift for people of all ages and inclinations, but since this is a blog about illness, I do have to say that for people with chronic illness, books can take on even more significance. They bring the outside world into our homes when we can’t always leave, and they offer escape and entertainment when we need it most. I think part of the reason I was such a big reader at such an early age is because it was the one thing I could always do, no matter how sick I was or how many IVs I had in my arm.

I’m working on my own recommendations, but for now, check out this book editorial from the Boston Globe–it’s full of quirky selections for the readers in your life. Happy shopping!

Giving Thanks

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I was sandwiched between two people on a crowded subway trolley a couple of weeks ago when I smelled it. Instantly, my stomach tightened with rolls of nausea. I grabbed the silver pole next to me with whitened knuckles. Do not throw up. And in a matter of seconds, I wasn’t an adult on my way to work, I was a little kid on a cold November morning about to have the warm blanket placed over my legs in the operating room.

The woman who sat down next to me smelled just like anesthesia. I don’t know how to describe the smell accurately, but it is somewhat sweet and plastic-y at the same time. It is a very particular smell, and it gags me (obviously). Usually I am more prone to hear songs and associate them with a time or place than I am to associate smells, and I’ve never had a more visceral reaction to a smell than I did that day on the train.

It was fitting that this occurred on a cold, sunny November day. You see, when I was little and needed surgeries to drain infections from my head, ears, sinuses, etc, they tended to cluster around the holidays, the peak infection season for me. Also, we tried to plan surgeries for when I had a day or two off from school anyway so as to build in some extra recovery time. Accordingly, Veteran’s Day and Thanksgiving week were prime candidates, and in some particularly acute circumstances, Christmas Eve day also became a go-to surgery day. The sharpest details from these accumulated late fall surgeries are being asked to count backwards from 10 to one as the anesthesia mask was placed over my face, and the wrenching nausea that gripped me in the recovery room (I’ve since learned to ask for Zofran)—and that particular smell brings me right back to those moments.

So where am I going with the charming tale of anesthesia memories? Well, it’s two days before Thanksgiving and our house is starting to fill with much better smells: cornbread baking, sausage sautéing, cider mulling. These are the smells that should accompany November, and I’m happy to replace the surgery smells of my childhood and the inpatient smells of many lung-related holiday hospitalizations as an adult with them.

And so the traditional Thanksgiving post is tinged with special appreciation for where I am in this moment, and the people and circumstances who are part of that:

My family, who was there for me during all those surgeries and is there for me in so many ways today.

My husband, who is seriously amazing (and fairly obsessed with making Thanksgiving perfect).

My friends, who are funny, smart, caring and patient.

My readers, those who buy the book, show up at readings, or get in touch with me to share their feedback, and those who take the time to read this blog—without you, all this would exist in a vacuum.

My favorite reads and the wonderful writers, scholars, and bloggers who always give me something to think about.

My fabulous physical therapist, who gets up at 5am every day and fights gridlock traffic to show up at my house with a smile and deliver superb chest physical therapy.

My doctors, who actually communicate with each other and aren’t deterred by the lack of easy or obvious answers when it comes to this body.

My job and my husband’s job, because at the end of the day if we both still have them and have health insurance, we are fortunate.

And lastly, the fact that despite their many health problems, everyone I love is healthy enough to sit at the table this year.

Staying Employed When You’re Chronically Ill: Interview with Rosalind Joffe

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It is my pleasure to host today’s stop on the virtual book tour for Women, Work, and Autoimmune Disease: Keep Working, Girlfriend!. I first got to know co-author Rosalind Joffe when I interviewed her for my own book, and I am excited to be a part of this tour—this book is incredibly informative and should be a go-to resource for anyone trying to navigate staying employed in the face of chronic illness. My interview with Rosalind follows:

1. I know you must get this question a lot, but it’s an important one—why did you ultimately decide to write this book?
RJ: I’d seen in my own life and from my client’s experiences that there is a fair amount of pressure for women with chronic illness, particularly married mothers, to stop working. Since I had found that continuing to work as much as possible when possible was essential to my own health, I wanted to encourage those who view this as I do by arguing against some of the prevalent myths.

2. Why the focus on autoimmune disorders in particular?
RJ: Primarily, it helped us narrow our focus. All of the issues we discuss in the book are relevant to any chronic disease or condition but it was too difficult to try to leave it that broad. It was easier to narrow it to since autoimmune diseases affect women 4 times as often as men and, usually between ages 25 -40 (prime childbearing and career building ages). It’s this confluence of factors that make the situation so problematic for women. Finally, both Joan (my co-author) and I live with auto immune diseases which made it easier to speak from and incorporate our own experiences.

3. What are some of the biggest fears or misconceptions women have about the workplace and chronic illness?
RJ: I think that women and men worry that they’ll be marginalized if others know that they have an illness. The reality is that it can happen regardless of how savvy you are. Women also worry that they cannot live with active chronic illness, have a demanding career and raise a family. Here, too, the reality is that it is very difficult and requires a lot of planning and taking a long view of situation, thinking strategically. Finally, many young women don’t think enough about what it takes to balance family and career when they’re choosing a career and that becomes even more difficult when illness adds into the mix. I suggest thinking carefully about your career options when you get a diagnosis and don’t leave it up to chance. I wish I had been smarter about this early in my career.

4. You write about developing a “warrior spirit.” Can you discuss what that means, and why it is so relevant to the issues of employment and living with chronic illness?
RJ: Actually, I worried about that phrase because I didn’t want the term to be interpreted that women should be more like men. It’s a term I use with my clients because I think that chronic illness can leave you feeling as if life is out of your control and can encourage passivity, particularly when you spend so much time seeing doctors and healthcare providers! I’m not suggesting that you become more combative. Rather, I am suggesting that you think for yourself, you seek options even in the face of opposition and continue to build your ability to be resilient.

5. A lot of my readers are younger adults who are just entering the workforce and trying to carve out a career path with the added burden of chronic illness. What advice would you give to the youngest members of the workplace in terms of things they should consider/look for in a career or workplace environment?
RJ:That’s a great question. First, think long and hard about what you love to do, even if you think it’s not your greatest strength, because that interest and passion will keep you going for the long haul. Consider other aspects of this career and how it fits your values and interests in life. When you think about a career choice that requires additional education or training, try to work in that field in some capacity so you can see what it’s like up close and personal before diving in. Choose a career that allows for as much flexibility as possible so if one job turns out to be a poor fit, there are other places where you can apply your skills. Most importantly, you will always be able to find work if you are good at what you do and bring value, so make it your mission to be the best you can be. You might not be able to work at the pace you would most like all the time or make the salary you dream of, but if you plan strategically, you will be able to continue to do something that has value and feels meaningful.

6. Lastly, you’re a patient yourself, and through the years you’ve faced many of the challenges and setbacks as your readers. What has been your biggest challenge in terms of staying employed? Would you say you’ve reached an ideal balance now?
RJ: That’s tough because there were so many challenges to staying employed. I didn’t think about my career in the long term early enough and I was always trying to make a job fit to my needs. My health waxed and waned (I developed several autoimmune diseases over the past 30 years) so it became increasingly difficult to plan. If I’d had a crystal ball 12 years ago when I had an ileostomy (curing the ulcerative colitis) and then went on MS medication (that slowed down the MS progression dramatically), I probably would have taken a path that would have left me more financially secure. But I’ve been lucky to find work that I really love doing and that I can do. No doubt about it, working for myself at home has made it much easier to keep working and I hope to keep doing this for a very long time.

Thanks so much, Rosalind, for writing this book and answering my questions!

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Just a quick reminder, while we’re on the topic of reading, that another great (and entertaining) edition of Grand Rounds is up at Musings of a Distractible Mind. Check it out!

Narrative Medicine: Better Doctors, Better Patients?

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One of the best classes I’ve ever taught—and by “best” I mean the most interesting, engaging, and rewarding, the class I learned the most from as an instructor—was a writing course for pre-med and health sciences students. It was called “Constructions of Health in Contemporary Literature” and it contained various essays from physicians, writers, and patients about illness, healing, social justice, etc. I was so fortunate to have the chance to read these types of works with a class of future health professionals and see the way they responded to these personal stories and how their readings might inform their identities as they develop their careers.

Of course, physician-writers are hugely popular outside the classroom; the best-selling work of authors like Atul Gawande and Jerome Groopman are probably the most well known examples of this. Narrative medicine is an important topic (now more than ever, I would argue), which is why I was so pleased to come across Dr. Pauline Chen’s article on combining literature and medicine on Tara Parker-Pope’s Well blog in the New York Times.

Among other things, the article discussed how incorporating literature and writing workshops during residency can help doctors view patients with more empathy and compassion—and by extension, it can help them provide better care. It is no easy thing for the well to be able to understand what it feels like to be sick, and no insignificant thing when doctors can do this. As a patient, I am encouraged by programs that incorporate literature and medicine and as a writer I am appreciative of the value others see in studying these works.

Perhaps it is from the dual point of view that I see another strong benefit to narrative medicine beyond fostering more empathy and compassion in doctors: I think it makes us better patients, too. It is useful for me to see the other perspectives, the thoughts and fears and reflections of the people charged with healing (not curing) me. I hope it makes me more understanding and more open-minded, too.

Between writing about illness, living with it, and teaching it for a living, I’ve done my fair share of reading. Here’s a short list of some of the best examples of both narrative medicine and all-around riveting health writing I’ve found:

A Life in Medicine: A Literary Anthology, edited by Dr. Robert Coles and Randy Testa. I’ve used this book as a basis for undergrad and grad classes and have even given it as a gift. It’s a great mix of classic and contemporary pieces.

The Tyranny of the Normal: An Anthology (Literature and Medicine, Vol 2), edited by Carol C. Donley and Sheryl Buckley. An interesting combination of scholarly and personal essays and poetry on illness and disability.

Complications: A Surgeon’s Notes on an Imperfect Science, by Dr. Atul Gawande.

How Doctors Think, by Dr. Jerome Groopman. I loved this book so much and it made me think about so many things that I quoted it in my own book when discussing the doctor-patient relationship.

Mountains Beyond Mountains: The Quest of Paul Farmer, a Man Who Would Cure the World, by Tracy Kidder. I was originally assigned this book in graduate school, where the obsession began. It is one of my favorite books of all time, and one I recommend to students, family, and friends every chance I get.

The Spirit Catches You and You Fall Down, by Anne Fadiman. An utterly engrossing and emotional narrative about one family’s quest to cure their daughter and what happens when Western medicine and other cultural ideals and norms clash. I’ve used excerpts of this in classes and recommend it to everyone.

Illness as Metaphor and AIDS and Its Metaphors, by Susan Sontag. Every time I read it and teach it I come away with something new.

Have you enjoyed any of these titles? Have any more to suggest? I am always on the lookout for new material!

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Speaking of writing about medicine, another fantastic edition of Grand Rounds is up today at Emergiblog. Check it out!

Mid-Week Resources

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Looking to dig into some good chronic illness resources to get you to the weekend? The July Pain-Blog carnival is now up at How To Cope With Pain, and remember, new bloggers are always welcome to contribute their best posts at the end of each month.

Also, Leslie at Getting Closer to Myself has a call for submissions about living with chronic illness as a younger woman. As the author of a new book all about chronic illness in your twenties and thirties, I’m thrilled to see growing attention towards this phenomenon.

An Open Mind

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I was asked recently what one thing I would like to tell physicians, nurses, and other health care providers. I just wrote a book about interacting with the health care system, and its content ran the gamut of emotion: gratitude, optimism, frustration, skepticism–clearly I’m not one for brevity.

In the end, though, the answer was succinct, and the more I think about it, it is something that applies to patients and practitioners equally:

Keep an open mind.

In terms of diagnosis, the flash point for so many patients with chronic conditions, keeping an open mind works in several ways. For physicians, it means remembering that the obvious, logical diagnosis may not always be the correct one, something I can attest to personally. I am forever grateful to the physicians who looked beyond what “should” have made sense for a diagnosis and found the diagnosis that actually reflected both my experiences and my symptoms—even if it was an exceedingly rare one. For patients, it means remembering that even if you’ve been dismissed before, it is possible to start fresh with a physician or nurse practitioner and work towards a correct diagnosis.

In daily life, keeping an open mind means, quite literally, being open to new or creative ways to adapt to illness. Whether it means trying techniques like yoga or meditation, incorporating new foods and recipes into meal planning, or very pragmatic things like switching your exercise schedule or working out a flex time arrangement with an employer, keeping an open mind means recognizing there are many different approaches towards accomplishing a particular wellness or lifestyle goal.

If you’ve been reading this blog regularly, then you know how important I think an open mind and a willingness to try new ways of solving existing problems are to meeting some of the universal challenges in health care: better disease outcomes, increased compliance, and, yes, of course, more accurate and efficient diagnoses.

That’s why I’ve posted about the value of expressive writing, and why I developed a creative writing program for chronically ill pediatric patients. It’s also why I think programs like Dancing with Parkinson’s or Loolwa Khazzoom’s Natural Pain Relief that use dance and other forms of the arts to relieve pain, increase strength, and otherwise address symptoms of debilitating disease are incredibly valuable.

It’s also why I was so interested in “Monet? Gauguin? Using Art to Make Better Doctors” from Sunday’s Boston Globe, which discussed a class at Harvard Medical School that encouraged medical students to use art to improve that most fundamental and most complex of interactions—the patient exam and diagnostic process.

The article quotes Dr. Joel Katz, who first proposed the class five years ago, as saying, “We’re trying to train students to not make assumptions about what they’re going to see, but to do deep looking. Our hope is that they will be able to do this when they look at patients.”

Turns out, new research in the Journal of General Internal Medicine supports this. The article goes on to say that the students’ ability to make more observations increased by 38 percent. In age where physicians rely heavily on CT scans, MRIs and other specialty diagnostic tools—some argue too heavily, and at too high a cost for the health care consumer—helping medical students learn to see the many possibilities inherent in one situation is a valuable skill indeed. More precise observations yield more precise diagnoses.

Sounds pretty good, doesn’t it? The course was a stark departure from the required core courses at Harvard Medical, but all it took was a few open minds…

Following Up on Living Proof…

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In a nice coincidence, I did an interview with Deborah Harper of Pyschjourney today that emphasized many of the themes in my previous post–a pioneering generation of adult patients; the impact of spousal caregiving on younger marriages; transitioning into adult care as a younger adult, etc. While cystic fibrosis is by no means the only example of this type of disease whose population is truly re-shaping medicine, it is a great example nonetheless. Of course we talked about lots of other stuff, too, and you can click here to download the podcast.