Category Archives: Writing

Living Proof…

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Before I jump into this post, I want to take a moment to thank each of you who showed up to my reading events last week. The show of support at Porter Square Books was truly overwhelming—it was a standing room only crowd, and we sold out of all the books and dipped into special orders. Many thanks to everyone who showed up; it was great to see familiar faces, and equally great to see and hear from so many of you I’ve never met before.

One of the questions I am asked often, and one of the things I spoke about last week, is why I wrote Life Disrupted. The short answer is that I saw a real need for it. While there are many more details and nuances to that statement, that one simple sentence really does sum it up. I saw a population of younger adults with chronic illness that was much larger than most realized. Patients with serious childhood diseases are living longer into adulthood, and many otherwise healthy patients first manifest chronic and autoimmune conditions in their twenties and thirties.

Within that diverse patient population, I saw so many important trends that weren’t being written about in a substantive, mainstream way. Two of those trends, and arguably two of the most compelling and complicated ones, include the impact of spousal caregiving on younger marriages and the “can versus should” debate in terms of people with chronic illness having children. I was fortunate to find patients whose experiences speak to these issues, including patients with cystic fibrosis (CF), among many various illnesses covered in the book, and I learned a lot from them.

So why am I telling you all of this right now? Because this week I was also fortunate to stumble across this blog, Confessions of a CF Husband. It’s an engrossing, honest look at one family’ journey through the wife’s double lung transplant and the premature birth of their very-much-hoped-for baby girl, a high-risk pregnancy situation indeed. Their struggles and triumphs are inspiring and sobering, and their realities mirror those of a generation of patients with the power to truly redefine how we perceive people with serious disease.

Summer Reading…

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Nothing says Independence Day quite like the Law and Order SVU marathon. With my long weekend vacation plans derailed by an acute infection (where do I keep catching these things, anyway?), I ditched the sandy shores of Cape Cod for my living room couch and settled in for the one-two punch of the nebulizer and Benson and Stabler cracking meaty cases.

However, my revised weekend plans also gave me a lot of time to feed my habit as a news junkie, and I came across some stories I had to share.

I recently wrote about the promise of research in terms of better treatments and improved outcomes, so I was particularly excited to read these new developments. This Boston Globe article discusses cutting-edge nanotechnology that allows scientists to detect cancer cells in patients’ blood, which could mean more targeted treatment and less side effects.

According to the article, “The technology, invented at Massachusetts General Hospital, uses a microchip scanner no bigger than a business card to analyze a patient’s blood, hunting for stray cells shed by tumors. The device is so powerful that it can detect a single cancer cell among 1 billion healthy blood cells.”

Another Globe article—this one’s hot off the presses, in today’s edition—reports that scientists have linked 32 genes to Crohn’s disease, a serious autoimmune disorder that affects the GI system. While genome research is often used to help determine the risk of developing certain diseases, this type of information is a powerful use of research with huge implications for patients. As the article posits, figuring out what goes wrong in certain diseases will help experts design more effective treatments:

“I would say Crohn’s disease has proved the paradigm,” said Dr. Francis S. Collins, outgoing director of the National Human Genome Research Institute. “Namely, that by studying the genetic factors involved in a complicated disease, you can shine bright light on its causes that you never could have achieved any other way.”

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In preparation for a ReachMD radio interview I’m doing, I’ve been thinking a lot about the doctor-patient relationship. I’ve had some truly amazing doctors and nurse practitioners—compassionate, insightful, dedicated, and creative people. I’ve also had the opposite, of course, and those are the relationships I’ve abandoned. As such, I found this New York Times piece fascinating—in this case, it’s the doctor who ends the relationship because he cannot work with the pediatric patient’s difficult (and noncompliant) mother. Check it out and see if you agree.

Speaking of the New York Times, I’ve enjoyed past entries about writing and illness in Tara-Parker Pope’s “Well” column. If you’re interested in the power of expressive writing, here’s another good read from her column, this time about poetry and cancer.

Enjoy!

Illness, Wellness, and Storytellers: Publication Day Musings

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So today is the official publication date for my book, which is pretty exciting. I’ve seen photographic evidence of Life Disrupted officially on bookshelves, and I’m looking forward to walking into a store and seeing it with my own eyes.

Given its content, I find it somewhat amusing and fitting that if I don’t make it to a store tonight it is because I am sidelined with a freak viral infection of the lymph nodes in my abdomen. I mean, really, I couldn’t have scripted that life disruption better if I’d tried. (And oh yes, I did just make that terrible pun, but it’s my first and last offense on that front, I promise).

Anyway, while my mind is very much on writing these days, I couldn’t help but linger over this post by Felicia Sullivan, a terrific writer and supporter of writers who has an amazing memoir out right now. In this post she’s writing a review of Petite Anglaise, but what resonates most with me are her thoughts on blogging and its function in our lives as writers:

“This book is timely, however, when we’re all discussing “oversharing” and how our online “personas” affect our lives offline. One’s life should be lived not be crafted as a series of anecdotes fit for a blog post, so admittedly I came to this book with pre-conceived views on what parts of one’s life should be kept sacred.”

I couldn’t agree more. Of course life events are where writers and bloggers get their inspiration and everyone approaches how they blog differently, but Sullivan’s position that life shouldn’t be lived to serve as writing fodder is right on the mark. And I can’t help but feel that for people writing about disease/medicine, that rings especially true.

How do we sift through the symptoms and mishaps and complications and come up with something worth sharing (that isn’t over-sharing?) I’m curious what those of you in the trenches of medblogging have to say about that, because again that line is not only blurry but it varies greatly depending on writing style and approach. I don’t ever want my conditions to become why I write—after all, who wants to hear daily that it’s hard to breathe? That isn’t news or newsworthy in my world; as I’ve said before, it’s merely an occupational hazard of being me. It’s a thought trapped in a vacuum, when what I want is to open things up a bit.

But more than that, I find myself thinking about those parts of our lives we keep sacred and off-line, something even more present in light of the fact that it’s publication day for The Book. Obviously details of my personal life make up a lot of the book, as do personal details of several other patients. In a way, I faced the same questions and decisions in writing the book that I face when I blog—is there an added value to bringing in a particular story or anecdote? Does it advance or complicate an idea that’s important enough to warrant a reader’s time and attention?

And more universally, how do we know what stories are ours to tell and which aren’t? Anyone who writes nonfiction or blogs faces that question. Just because someone is or was in our lives, does that mean it’s fair game to include their details and their lives in our stories, especially if a medical situation is involved? Yet at the same time, our lives are so linked to the people in them that there’s no way our stories don’t involve them.

Personally, I err on the conservative side. I rarely use names on my blog unless it’s a public figure, and it isn’t, I just use first names or the ubiquitous “my friend” or “a loved one.” I wonder if that takes away from the human interest side of the story, but I’d rather take that risk. I don’t think there’s one ultimate solution to this question of whose story is it to tell, and it’s definitely not a problem unique to blogging—it’s just more exaggerated by the immediacy of blogging.

Anyway, before you rush out to buy a copy of my book (you are going to get a copy, right?), here are some links that are very apropos to this discussion on storytelling:

Check out this week’s edition of Grand Rounds over at Shrink Rap. Then, head to ChronicBabe where my friend (and a patient whose story is in my book!) Jenni Prokopy is having an essay contest to celebrate ChronicBabe’s Third Anniversary.

Happy reading on all accounts!

In Control…

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I had an interesting conversation with a friend the other day about painkillers and the issue of control—namely, how painkillers rendered her too out of it to make decisions or know what she was saying or doing.

Not exactly the best feeling in the world.

I nodded, her words reminding me of all the times I’ve come out of anesthesia after surgery. For me, those initial waking moments when I can’t focus my eyes, can’t see without my glasses, and can’t make the words swimming in my brain come out of my mouth in any logical way, are the epitome of loss of control.

And, as I may have mentioned before, I am somewhat of a control freak.

But injuries and surgeries aside, the issue of control is obviously so closely linked to living with any kind of chronic illness. Sure there are things we can do every day to manage conditions and there are preventative steps we can take, but when push comes to shove, so much is not up to us: whether we’re born with genetic conditions, whether autoimmune or other diseases sneak up when we’ve been otherwise, whether diseases we’ve done everything to manage progress anyway.

In the past, my quest to impose order on the chaos that was my medical existence pushed me to extremes. I wanted to do everything, to do everything perfectly, and to be in charge of all the details.

Clearly life doesn’t work that way, healthy or sick. It just took me about two decades to figure that out.

But of course, maintaining a sense of control is still a part of daily life. It isn’t as defining a characteristic as it used to be, but it’s there. None of this is breaking news, obviously, but I did take a fresh look at all of this when someone recently made the connection between writing and control.

My whole life I’ve always considered work, in whatever age-appropriate form it took, to be the antidote to medically-induced chaos. Meeting a deadline no matter what condition I was in meant I still exerted authority over illness. Still having responsibilities and roles meant I was something other than just a sick person—I’m sure many of you can relate to that, regardless of disease or profession.

Now that I’m an adult, now that I’m a writer, writing is my work. But it’s also a healthier way of controlling things that goes beyond the fact that it is my livelihood—no matter what state my body is in, no matter if I can’t sit up to type or I am supposed to be somewhere else, I can still write. I can still control a fundamental aspect of who I am.

So in that sense, I’m pretty lucky.

In Control…

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I had an interesting conversation with a friend the other day about painkillers and the issue of control—namely, how painkillers rendered her too out of it to make decisions or know what she was saying or doing.

Not exactly the best feeling in the world.

I nodded, her words reminding me of all the times I’ve come out of anesthesia after surgery. For me, those initial waking moments when I can’t focus my eyes, can’t see without my glasses, and can’t make the words swimming in my brain come out of my mouth in any logical way, are the epitome of loss of control.

And, as I may have mentioned before, I am somewhat of a control freak.

But injuries and surgeries aside, the issue of control is obviously so closely linked to living with any kind of chronic illness. Sure there are things we can do every day to manage conditions and there are preventative steps we can take, but when push comes to shove, so much is not up to us: whether we’re born with genetic conditions, whether autoimmune or other diseases sneak up when we’ve been otherwise, whether diseases we’ve done everything to manage progress anyway.

In the past, my quest to impose order on the chaos that was my medical existence pushed me to extremes. I wanted to do everything, to do everything perfectly, and to be in charge of all the details.

Clearly life doesn’t work that way, healthy or sick. It just took me about two decades to figure that out.

But of course, maintaining a sense of control is still a part of daily life. It isn’t as defining a characteristic as it used to be, but it’s there. None of this is breaking news, obviously, but I did take a fresh look at all of this when someone recently made the connection between writing and control.

My whole life I’ve always considered work, in whatever age-appropriate form it took, to be the antidote to medically-induced chaos. Meeting a deadline no matter what condition I was in meant I still exerted authority over illness. Still having responsibilities and roles meant I was something other than just a sick person—I’m sure many of you can relate to that, regardless of disease or profession.

Now that I’m an adult, now that I’m a writer, writing is my work. But it’s also a healthier way of controlling things that goes beyond the fact that it is my livelihood—no matter what state my body is in, no matter if I can’t sit up to type or I am supposed to be somewhere else, I can still write. I can still control a fundamental aspect of who I am.

So in that sense, I’m pretty lucky.

Interviews, Inspiration, and Links

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I am used to being the one conducting interviews, so I was anxious to see how my Author Q&A with Library Journal went. Check it out here.

Since we’re (somewhat) on the topic of writing, I read a great essay in the Chronicle of Higher Education. It discusses the process that results in published work, a process that, from the outside, may not appear as arduous and productive as it really is:

“What does it look like to do intellectual work? What does it look like to have an insight? To formulate a theory? To solve a philosophical problem? What does it take to get to the point at which you’re ready to sit down and write something, ready to present something to the world?

Experience tells me that sometimes it looks like playing Spider Solitaire. Or twirling one’s hair, talking to oneself, or sitting stock still and staring into space…

…We go through the motions that have led us, in the past, to cerebral success. We can no more force ourselves to make an intellectual breakthrough than we can will ourselves to sleep. All we can do is prepare the environment and perform the rituals associated with thinking.”

For anyone logging long hours doing work that isn’t always visible in conventional ways, be sure to read it. Or pass it on to the next person who asks you, “So what do you do all day?”

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So I’m a day late posting, but here’s hoping the expanded edition of the May Pain-Blog Carnival will give you some good weekend reading. The best posts of the month are featured, and new bloggers are always welcome to participate.

Library Journal and Grand Rounds…

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So I’m jumping into the political fray courtesy of an interesting press call today but while that post is percolating, here are a couple links hot off the presses.

Library Journal gave Life Disrupted a starred review in their May 1 issue. Check out it online here!

Doc Gurley hosts a knock-down, drag-out edition of Grand Rounds this week–check out the multitude of heavy-hitting posts.

Some Life Disrupted Literary Love…

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It’s pre-pub time, when advance reader quotes and reviews for Life Disrupted start coming in and all of the sudden, the book that lived in my head and then in my laptop all these months is starting to feel real. To that end, the advance quotes that appear on and in the book are now available right here, so check them out!

I will also place them in a more permanent position on my sidebar. Stay tuned for lots of other good book stuff and links in the pipeline, and I promise the final cover image and pre-order links will be highlighted soon!

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In other literary news, did you know April is National Poetry Month? Clearly you’re aware of how much I support writing as an expressive and valuable resource for patients, so I am happy to pass along that MyMigraineConnection.com is calling for submissions for its 2008 Putting Our Heads Together Poetry contest. If you’re inspired to help spread awareness of migraine disease and chronic headaches, check out the contest details here. The deadline is April 21, so start writing!

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In keeping with the writing theme, check out this week’s Grand Rounds, a compilation of the best writing in the medical blogosphere, hosted this week by Dr. Wes.

Writing Well

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Coming from keyboard of a writing instructor, those two little words might just conjure up images of sentence diagrams and arcane grammar rules. While I do admit to making my advanced writing students suffer through a brief “it’s/its” and “there/their/they’re” refresher (because really, can I release them into the real world without knowing the difference?), I have no intention of discussing writing mechanics here.

No, I’m much more interested in a far more compelling meaning of “writing well.” A few months ago, I mentioned a creative writing program for pediatric patients with chronic illness I was given a fellowship to finish developing. I spent more than a year consulting with doctors, pediatric social workers and other experts and compiling extensive research to make the case that if you give pediatric patients the tools to express their feelings and emotions about illness, the benefits are manifold: better adjustment and attitude towards illness, increased compliance with treatment plans, increased quality of life, and decreased hospitalizations and costs.

It’s a win-win situation.

Though I’ve had to step away from active implementation of the program temporarily, I remain committed to seeing it come to fruition, and remain committed to my belief in the power of words to heal. And certainly, witnessing a thriving medblogging community only furthers my belief in this.

Of course I had a lifetime of personal anecdotal experience to motivate me—when I was a child sidelined with illness, I read and wrote constantly. The sicker I got, the more pages I read and the more pages I wrote.

However, I used something far more concrete to help build my case: research published in JAMA that showed patients with asthma and rheumatoid arthritis who wrote about their illness experience manifested better health outcomes than the patients who didn’t.

I am happy to report there is more evidence to help make the connection between writing and wellness even stronger: a recent New York Times article by Tara Parker-Pope called “The Power of Words for Cancer Patients.” Researchers followed 71 adult cancer patients who wrote about their illness experiences while waiting for their routine oncology appointments. They were asked write about how cancer changed them, and how they felt about those changes.

According to the article, “After the writing assignment, about half of the cancer patients said the exercise had changed their thinking about their illness, while 35 percent reported that writing changed the way they felt about their illness …While a change in the way a patient thinks or feels about a disease may not sound like much, the findings showed that the brief writing exercise led to improved quality of life.”

Writing about illness is far more than merely a coping therapy. Expressive writing can be transformative. The article quotes one study participant as saying the following about the writing process: “Don’t get me wrong, cancer isn’t a gift, it just showed me what the gifts in my life are.”

Seems like no matter what your age or illness is, if writing can somehow get you closer to that point, it’s worth a shot. Right?

News, Updates, and 2007 At a Glance

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Before I take a brief look back at 2007, here are some recent headlines to think about as we move towards 2008.

The relationship between Pharma and physicians is a complicated and often controversial one, and I’ve noticed a lot of media coverage about it recently. Check out this Slate article about off-label prescription use—it pits the instinct of the physician against the “industrial-government-insurance complex of medicine’s last quarter-century” and is an interesting read, especially if (like me) you’ve been prescribed medicines for off-label uses before.

In a different angle of the Pharma-physician phenomenon (oh alliteration, how I love thee), this Boston Globe article discusses tough new policies limiting the amount of interaction and influence drug companies have with doctors at UMass Memorial Medical Center. Sounds promising, but its feasibility is a consideration.

Now that I’ve taken stock of the last week’s headlines, it’s time to reflect on some of the headlines that have appeared on this site. Perhaps this retrospective indulgence is merely that, but with a tiny bit of hindsight, I think I would categorize 2007 as a year of awareness—of being aware of how chronic illness affects those around us, of being aware of what others are going through and what lessons can be taken from that.

There have been ridiculous tales of medical mishaps and comic calamities (okay, I will stop with the alliterative abundance here, but who said anything about assonance?), and plenty of new voices who have made me laugh and impressed me with their grit.

There have been moments of profound grief, at once intensely personal and wholly universal, as well as moments of humility in the face of someone else’s pain. I’ve realized how much I owe the healthy one in my marriage, and how precious timing is when it comes to the people I love.

I’ve looked at books and the process of storytelling itself for inspiration and understanding. I’ve had some personal highs and I’ve only been in the hospital a few times, a different kind of personal high indeed.

From gluten wars to medicine and politics, it’s been a busy year for acknowledging and understanding disease and its many manifestations in our lives.

May you all have a happy and healthy 2008!