Category Archives: Life Disrupted

Women and Health Care: Are We Feeling Better Yet?

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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.

Young Adults, Chronic Illness, and Employment

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Just a few weeks ago, I wrote a post where I confessed that the
smaller daily challenges of being employed with chronic illness were more challenging than normal this year. In Life Disrupted, I devoted several chapters to the larger, macro issues that are part of any discussion of work and chronic illness: disclosure, flexibility, health insurance, compromises, optimal career paths, etc. I also interviewed the incredibly wise Rosalind Joffe about her thoughts for younger employees who have CI.

What the past few months have shown me is that even after the supposed “hard part,” the discussions we have and decisions we make to try and balance our ambitions with our health, still there is a tenuous push and pull between the ideal and reality. It is an evolving process, and while I have worked out a fairly successful balance right now, I know my career will continue to change as my professional and health needs demand. That is what makes it both exciting and a bit scary.

I can honestly say that when I graduated from college a few years ago (okay, seven years ago, I fully admit I am getting old!) I would never have predicted I’d be doing what I am doing now, but I definitely knew I had some tough choices to make. At the time, I was still working through accurate diagnoses for my immune and lung problems and spent anywhere from 4-10 weeks a year in the hospital. I had to be realistic about what I could expect from my body, but I was also unwilling to abandon the career path I was most passionate about. I just had to figure out a more creative way to get the writing and publishing experience I needed.

Anyway, I’m thinking a lot about those early career days right now as I prepare to speak at DePaul University next week. My topic? You guessed it: career considerations for young adults leaving college. There are so many threads to this discussion, and many of these points were raised by patients I interviewed for my book:

Our careers are often a huge part of our identity, especially when we are in our twenties. Think about a typical night out—how often do people ask you what you do? What are you if you are young and not working?

Many companies and institutions are not equipped to deal with (and do not understand) the fluctuating nature of chronic illness.

Young people are often the most likely to be uninsured or underinsured, so many young people with CI must choose between benefits and deteriorating health.

We often have to make choices very early on in our careers—when our healthy peers are building a name for themselves—that put us at a disadvantage in terms of trajectory.

Of course these are just a few different points relevant to young people entering the workforce. As I gather my thoughts, I’d love to hear from any of you out there who are in the midst of these decisions, or remember what it was like to face the working world as a young adult with chronic illness. What wisdom, advice, or hindsight can you offer this next generation of employees with CI?

The Reality of Rare Diseases: The Official Rare Disease Day Post

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I have a rare or “orphan” disease, one that affects fewer than 200,000 patients. If you’re new, mine is a genetic respiratory condition called primary ciliary dyskinesia, or PCD. Cilia, the tiny structures that line the respiratory tract and clear out debris, do not work properly, leading to infections, decreased oxygenation, and long-term lung damage. There are only 1,000 documented cases of PCD but up to 25,00 Americans are thought to have it.

There are more than 700,000 rare diseases in the United States, and as I mentioned before, the 25 million Americans who live with them largely fly under the radar—disease-specific foundations work tirelessly to raise money and awareness, but there are few trendy wristbands, colored ribbons, or designated disease awareness months in our world.

The built-in community other conditions sometimes have is harder to come by; I’ve met exactly one patient with PCD in real life and though we said hello we could not stand too close and really speak to each other because of the communicable diseases we could spread to one another.

That’s why Rare Disease Day, sponsored here in the US by NORD, a nonprofit collaborative of voluntary health organizations that works for the prevention, treatment and cure of rare diseases through advocacy, research and education, is so important. I can vouch for how significant a role research has in the diagnostic trajectory of a rare disease patient—only with advanced technology could my new specialist hazard a look at the cilia causing so many problems and start treating me appropriately.

So the goal of this global day of recognition is just that—to raise awareness of rare diseases as a public health issue. For so many reasons it is a public health issue—we need to prevent disease progression, find more effective treatments, and keep rare disease patients as productive and healthy as possible.

But awareness goes much deeper than that.

For many patients, the first hurdle is awareness within the medical community itself. Like many PCD patients, it took years (or, um, my entire lifetime) for me to get a correct diagnosis, years where irreversible damage to my lungs occurred while I labored under treatments for the wrong condition. My father, who has a rare connective tissue disease, was misdiagnosed for over seven years. In the end, it caused him a kidney, multiple broken bones, and a correctly functioning pancreas.

Collateral damage, I suppose.

With more knowledge and technology at our disposal, hopefully rare disease patients across the disease spectrum will get more timely diagnoses and can start available treatment sooner.

Diagnosis isn’t the only hurdle—consider a patient with Ehlers-Danlos Syndrome I profiled in Life Disrupted, who was labeled a drug seeker by nurses in her ER because of her frequent (necessary) trips for dislocations. When I roll into the emergency room in respiratory distress and have to both spell and define PCD to the triage nurses and residents, though, I know I’m in trouble. It’s understandable; specialists are the ones who see these diseases regularly, not emergency room residents, but with communication and preparation—I bring a printout of my medical history and medications with me—it is a situation that is improving.

And then, of course, there is the public misconception. Even when I am infection-free I have a consistent cough, a loud, abrasive cough, and an audible wheeze. “Are you sick?” strangers will ask, not-so-discreetly stepping away from me. “No, I’m just me being me,” is my default retort. Convincing the person standing next to me on the train that I am not contagious is not easy, but I expect the whispers and queries in public, just like I expect the blank stares of incomprehension. If I say I have a rare disease or I have PCD, I just get a bigger blank stare.

Clearly everyone living with a chronic condition has individual challenges and struggles. Having something that is really rare just adds another layer of complication—and sometimes, that complication can have serious consequences. I think we’ve all heard enough “You have what?” and “I’ve never heard of that!” to last a lifetime.

With advanced technology and better diagnostic tools, the rare disease population is growing. Patients with serious childhood illnesses are living longer into adulthood and having their own children. Others are finally getting the right diagnoses and enrolling in clinical trials or connecting with other patients via online groups and social-networking sites. There is momentum, and with momentum, there is increased understanding.

Let’s hope so, anyway.

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

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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.

On Work and Chronic Illness

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It’s been a tough blogging spell lately. Not for lack of topics—I have a running Stickie note of links and ideas on my desktop—but more a lack of focus or creativity. Sometimes being pulled in many different directions and having many different things to talk about can have the exact opposite effect of what I’d like as a writer.

In fact, I’ve started and stopped at least three different posts since Tuesday. And then a link to this article in February’s More magazine appeared in my inbox, and suddenly I knew what I needed to write about.

The article is called “Ill in Day’s Work” and, as you might expect, it explores the challenges of chronic illness in the workplace. (It’s written by Donna Jackson Nakazawa, author of the excellent book The Autoimmune Epidemic: Bodies Gone Haywire in a World Out of Balance–and the Cutting-Edge Science that Promises Hope).

The article itself is informative and encouraging, and covers many of the “macro” issues of employment and chronic illness—disclosure, financial compromises, discrimination, etc. Many of these issues are ones I discussed with my colleague Rosalind Joffe for Life Disrupted, and though this article focuses on women a bit older, the universals resonate compellingly.

But those big-picture items are not what I want to discuss today. I’ve done a lot of compromising and negotiating and finagling already, and for now I think I’ve patched together a career path that works for my skill set, my long-term goals, and my health.

However.

It’s the everyday, smaller stuff that resonates with me these days. For some context, I’ve been really quite sick since before Christmas, with the exception of a few days in the middle of January. Sicker than usual, sicker than I have the patience or tolerance for, sick enough that I was on nebs hourly for awhile. (I haven’t written about it because there really isn’t a point; this is winter for me and there’s not much interesting to say about it.)

This winter’s malaise has made staying engaged in my work difficult. The issue of physically being able to get to work is one thing. Luckily some of this happened over winter break; luckily no one minded when I had to cancel class(which I never do); luckily my students are patient with my weeks-long constant coughing and my lack of voice; luckily I work from home a couple of days a week; luckily my husband meets me to help me get home when I cannot make it back on my own.

Because I am finally starting to feel better, I can see the toll this semester has taken. I have not seen my friends in almost two months. I’ve missed all holidays and most family events.

More than that, it’s like I’ve been working in a tunnel, where I am so focused on getting through the day and making it home that I don’t have the mental or physical energy to be as productive as I’d like. I worry I’m not as “on” as I’d like to be in class, I worry I’m not as clear-headed when I get home and try to finish articles on deadline or finish research for a big project. The article mentions lost networking opportunities after work as a result of chronic illness, and I found myself nodding. Lately I haven’t even wanted to talk on the phone at night, never mind make it to functions.

However. (Again.)

I’m beginning to emerge from the hibernation, and so I’m beginning to see beyond the tunnel vision of merely getting through the day. This mish-mash of several different jobs, seven-day work weeks, and unconventional hours has been carefully thought out and planned with the future in mind, and while some winter days are darker than others, most of the time it works for me.

Nurses and Patients

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I’ve written about the doctor-patient relationship often. Whether it’s the need for communication and mutual respect or why primary care is important for patients with chronic illness, there’s much to say about this incredibly important relationship.

But when I read “Can Nurses Care Too Much?” in yesterday’s NYT, it occurred to me that I haven’t written as much about this other incredibly important relationship: nurse-patient.

In my personal life, I know a lot of nurses, and know how invested they are in their jobs and their patients. In my professional life, I often have nursing students in class and am always impressed with how engaged they are in what they do and how animated they become when patient care is discussed.

But it is in my patient life where I really see these qualities firsthand. For long stretches in my life I’ve spent several weeks a year as an inpatient, and from all those trips I can say this:

Nurses are the ones who can make (or break) a hospital stay. They are the ones who make sure my nebulizer medicines arrive on time, who jump in to give me chest physiotherapy if the physical therapist on the floor is tied up with someone else.

They are the ones whose conversations keep me distracted or encouraged, depending on what I need, and the ones who know that sometimes, visiting hours just don’t apply. In college, they calmed down my worried parents when I was an inpatient several states away, and they know that for someone who types all day long, getting an IV on the top of my hand is less than ideal.

Sure, I’ve had some negative experiences, just like I’ve had some doctor’s appointments I’d rather not repeat again. But the vivid memories, the faces and names and actions that stay fresh in mind, belong to the many nurses who have made serious medical situations a lot more tolerable.

Can nurses care too much?

That’s a pretty difficult question to answer because giving care can be such an emotional experience. (Be sure to read the NYT article, because the nurse-writer covers this poignantly.)

But what I do know is that when I’m wheeled onto a floor and my nurse comes in to greet me, or when I’m visiting a loved one and I see how compassionately and confidently their nurses speak with them, I am really glad that they do care.

***
In unrelated news, I just found out this week that Library Journal named Life Disrupted one of 2008’s Best Consumer Health Books. Check out the full list for some great titles.

Nurses and Patients

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I’ve written about the doctor-patient relationship often. Whether it’s the need for communication and mutual respect or why primary care is important for patients with chronic illness, there’s much to say about this incredibly important relationship.

But when I read “Can Nurses Care Too Much?” in yesterday’s NYT, it occurred to me that I haven’t written as much about this other incredibly important relationship: nurse-patient.

In my personal life, I know a lot of nurses, and know how invested they are in their jobs and their patients. In my professional life, I often have nursing students in class and am always impressed with how engaged they are in what they do and how animated they become when patient care is discussed.

But it is in my patient life where I really see these qualities firsthand. For long stretches in my life I’ve spent several weeks a year as an inpatient, and from all those trips I can say this:

Nurses are the ones who can make (or break) a hospital stay. They are the ones who make sure my nebulizer medicines arrive on time, who jump in to give me chest physiotherapy if the physical therapist on the floor is tied up with someone else.

They are the ones whose conversations keep me distracted or encouraged, depending on what I need, and the ones who know that sometimes, visiting hours just don’t apply. In college, they calmed down my worried parents when I was an inpatient several states away, and they know that for someone who types all day long, getting an IV on the top of my hand is less than ideal.

Sure, I’ve had some negative experiences, just like I’ve had some doctor’s appointments I’d rather not repeat again. But the vivid memories, the faces and names and actions that stay fresh in mind, belong to the many nurses who have made serious medical situations a lot more tolerable.

Can nurses care too much?

That’s a pretty difficult question to answer because giving care can be such an emotional experience. (Be sure to read the NYT article, because the nurse-writer covers this poignantly.)

But what I do know is that when I’m wheeled onto a floor and my nurse comes in to greet me, or when I’m visiting a loved one and I see how compassionately and confidently their nurses speak with them, I am really glad that they do care.

***
In unrelated news, I just found out this week that Library Journal named Life Disrupted one of 2008’s Best Consumer Health Books. Check out the full list for some great titles.

Pregnancy, Children, and Chronic Illness: Can Versus Should?

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One of the most complicated chapters to write in
Life Disrupted was the one about pregnancy and parenting when you have chronic illness. There were so many variables to consider, and so many questions that don’t necessarily have answers.

As one of my doctors once asked, just because you can get pregnant, should you?

That’s not something that can be answered in a single blog post, a series of posts, or a chapter in a book, but it’s one I think many patients face in some form or another. I know it’s one we face, and have approached from all sorts of angles the past couple of years.

What makes it such a complex question is that the variables that go into it differ from person to person. From where I stand, there are two major concerns that dominate this discussion: (1) getting pregnant and safely carrying a baby when you have chronic illnesses; and (2) being able to care for said children when chronic conditions flare.

Like the severity and diversity of chronic illnesses itself, these concerns run the spectrum. For example, one young patient in my book suffered from chronic pancreatitis and wondered how she would manage child care during her severe pain episodes were she to have a child. She also worried about passing her condition on to her child. Another patient with cystic fibrosis became pregnant and was prepared to sacrifice her life for her child—and that was a legitimate possibility. She faced serious health challenges before delivering her healthy child, and had to agree to have full-time help caring for her baby afterwards before her physician would sign off on her pregnancy plan.

(For another poignant story of the risks and challenges of pregnancy and childbirth with CF, check out Confessions of a CF Husband.)

These are just some examples. I know pregnancy and type 1 diabetes has its own set of blood sugar concerns, or that multiple sclerosis exacerbations may actually improve during pregnancy but MS medications should be avoided while pregnant, and the list goes on…

And of course, there are chronic conditions that can cause infertility. I’ve written before about how PCD affects both conceiving and carrying a baby, and those concerns are separate from the issue of being able to care for children during prolonged exacerbations or hospitalizations.

I think the latter concern is particularly universal—whether it’s pneumonia or a viral infection, a severe migraine or other pain flare, or a lupus or arthritis exacerbation, the issue remains the same: How do you care for children on the days when you cannot care for yourself? Those of you already balancing these competing needs, I’d love to hear your input. I’ve collected some patient stories on this, but it’s a conversation that continues to evolve, and the more voices the better.

If your chronic illness influences fertility or causes high-risk situations, how do you draw the line when it comes to medical intervention, whether it’s assisted reproduction or deciding when it’s time for a pre-term delivery?

There’s another distinction that fascinates me, and that’s the distinction between wanting to be pregnant versus wanting to be a parent. I don’t think I realized there could be a distinction until recently, and maybe there isn’t for everyone…but when you’re weighing what’s best for the mother and what’s best for a potential baby and what’s best for a family, I think it’s a relevant one.

In terms of the “can versus should” question, I wonder how many women prefer adoption? Is chronic illness an impediment to adopting, or does showing your conditions are under control suffice?

It’s an exploration that’s been on my mind ever since I wrote this Salon.com-inspired post about choice, and I think this angle is a natural extension of any talk about children and chronic illness.

I realize these are deeply individual choices, ones tied up in personal preference, disease progression, risk tolerance, religion, economics, and health insurance, to name but a few of the factors. There are no easy answers, and there are no “right” answers. Not everyone can afford to have help with childcare, not everyone can afford medically intensive pregnancies or to not work during high-risk pregnancies that require bed rest, and not everyone who would like to can afford the cost of adopting or having IVF.

(I know adoption and IVF are expensive regardless of existing health status; I’m merely focusing this discussion on people who are considering these options in conjunction with chronic illness.)

I guess in the end the variables and “can versus should” deliberations boil down to a different consideration altogether: how to be the parent you want to be when with a body that doesn’t cooperate.

So, if you’ve been through this, are actively discussing it, have plans for parenthood down the road, or became sick after you had children, please chime in.

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

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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!