Thursday, October 22, 2009


As I sit here and type this, I am acutely aware of my work e-mail accounts that I should check, and the client I need to respond to, and that article I bookmarked this morning that could be useful for my book. I’ve neglected Twitter woefully the past couple of days, and I’m late getting my writing group this month’s submission.


I know it is universal, this daily push and pull between the tasks we need to do (and the hierarchy that exists when we need to do several things) and the things that in an ideal world, we’d able to do or want to do. We make countless small decisions each day that reflect this notion: to read the newspaper or respond to an e-mail, to eat lunch at your desk rather than taking a short break and getting out of the office, to look over work on the train rather than zoning out or reading for pleasure.

What I’ve come to appreciate lately is that line is unbelievably relative—what you would do on a normal day is of little significance when major crises happen. You do what you need to do when people in your life are sick or need help or experience loss, just as you throw normal routines and schedules to the wayside when you experience your own crises, losses, or disruptions. In the immediacy of the moment, there are things that simply matter more.

But that’s the obvious part. What’s more complicated is the gray area in between the everyday and the extreme, when there are many conflicting priorities. Don’t get me wrong, I don’t know a person out there who doesn’t (at least on occasion) find the balancing act of multiple priorities difficult to manage. I honestly can’t imagine how often parents must face these decisions, but I know that the hierarchy of priorities gets turned upside down when you have a family.

But I do think that any type of chronic illness adds a unique layer to an already complex terrain.

As a minor example, I canceled chest physiotherapy the other day because I was feeling terrible (unrelated reasons) and just couldn’t stomach the thought of a half-hour’s worth of clapping. I wanted rest and I wanted peace. Yet by the very next day I was much more congested and wheezing on both my inhale and exhale, and knew that not having chest PT made a difference. Do I regret the decision? No, because in that moment, other health concerns outweighed the needs of my usually demanding lungs.

Decisions that might make so much sense from a financial, professional, and emotional standpoint sometimes conflict with what makes the most sense from a physical standpoint. There are all these reasons to take on a new challenge, but sometimes no matter how many compelling reasons there are to do something, the difficult answer comes down to this: what is good for the body and the mind do not always correspond. Sometimes the long-terms physical consequences of decisions are not worth the short-term gratification.

Of course, the reverse holds just as true. Sometimes it is more important to take the risk, to have that experience, than it is to miss out on it. Speaking as a girl who needed multiple doctors’ letters and lot of legwork to prove I was healthy enough to travel abroad when I was accepted into an Irish university, I can vouch for that.

And sometimes it is more important to be there for someone else even if it comes at the expense of your own body or comfort, because those memories are what people carry with them. Those memories are what you carry, too.

This all makes me think about I conversation I had on Twitter about H1N1 vaccinations recently. When asked how I felt about getting one, I said that it made sense for my individual circumstances—I am in a high-risk category, and all infections hit my lungs harder to begin with. I’d rather deal with the consequences of the shot than take a gamble with a flu virus that can cause serious (sometimes lethal) secondary lung infections.

But, these are my circumstances and my health priorities and might not apply to you for your own individual reasons.

In the end, I think most of us face so many choices that force us to weigh benefits and risks. From choosing time with friends over work to choosing certain medications over others due to different side effects, very little is without calculation…and the line is always changing.

But that’s what keeps things interesting, right?

Tuesday, October 13, 2009

These Three Things

It was a cold, rainy, dank morning in Boston today. Since I am stubborn and would rather put on another layer of clothing than admit it is time to put on the heat, it was an especially cold, dank morning in my upstairs office. (Update: I have since relented and turned the heat on; when I repeatedly stopped typing to rub my hands together, I decided enough was enough.)

Anyway, I had my music set to shuffle when a song from David Gray’s White Ladder started playing. Between the dreary weather and the music, I was immediately transported back to my year in Dublin, when that album was immensely popular and I would listen to it on repeat in the tiny living room of my apartment. David Gray was the soundtrack for train rides to Galway and Belfast, for spelunking trips and jazz festivals, for marathon paper-writing sessions and impromptu dinner parties.

In those days, I wanted time to stand still. I loved Ireland, I loved the friends I made and the classes I took, and I even loved the way my lungs responded to more consistent weather. One academic year was not long enough, and from the first September week I unpacked my bags and walked down Dame Street to Trinity College Dublin, I dreaded the June day that would take me back home.

Everything was an adventure, and the unpredictability of that was enthralling. It was so unlike my normally intense, over-committed schedule and my innate tendency to plan. I didn’t have answers, and I didn’t need them.

And here I am nine years later, listening to David Gray and the sound of the rain while I type away. This time, I smell herbal tea, not the smell of hops from the Guinness Brewery nearby, and the morning din is punctuated by dogs barking, not the bells of Christchurch Cathedral across the street.

Most notably, right now I would do anything to make time move faster. If I put my head down and just make it work, then before I know it spring will arrive and I can exhale again. I will get through the long winter months whose infections and setbacks already have their tentacles wrapped around me, months that have me holding my breath, steeling myself for what they might bring.

I will make the deadlines and finish the projects and the early mornings and late nights and weekends will blur into one composite as they recede into the background. In my research work I am asking so many questions I do not know the answers to yet and that is a good thing but it leaves me unsettled. A few more months of parsing the information out and who knows, maybe I will have answers. Or maybe I will just have more questions.

There might be more answers to major decisions that take too long to sort out, decisions with no easy solutions but lots of potential.

If I start to think about all of this, I get overwhelmed. Instead, I try to focus on the present, on today’s To Do list and today’s set of concerns and challenges. I cannot fast-forward through until spring anymore than I could freeze time and stay in Dublin nine years ago. I didn’t want to plan things back then, and I have very little control over planning a lot of things right now, and the irony does not escape me.

I came across a quote recently (and yes, it is up on the big combination board of chaos) that reads:

“They say a person needs just three things to be truly happy in this world: someone to love, something to do, and something to hope for…” (Tom Bodell).

I do not lack for these in any category, so maybe that’s the answer I need to stay present.

Thursday, October 08, 2009

More Narrative Medicine and Organized Chaos

I figured if I am going to write about the state of “organized chaos” in which I’m trying to just make things work, I should provide some details.


See that line of writing at the top of the wipe board? It really does say “There is nothing as clarifying as a deadline,” and I really do find myself looking up at it, particularly during those very late nights or absurdly early mornings when the clock and my physical capacity to finish the job are engaged in head to head combat.

The Stickies application on Macs? I would be lost without their color-coded power to organize my day, my thoughts, my lesson plans, and my research questions.

And yes, we have bookshelves. Bedrooms and home offices and even whole closets full of bookshelves, but after my marathon summer of research, we need more. Plus, I like to have my files and sources close at hand when I’m writing.

Anyway, looking at my slightly embarrassing stack of books reminded me of a post I wrote on narrative medicine. Plus, we just happened to talk about Jerome Groopman and Atul Gawande in one my classes today, and it occurred to me I haven’t updated my list of recommended titles in a long time.

Not all of these neatly fit the narrative medicine bill, but they are all about the human experience of illness in some way or another, and all are fascinating:

Carl Elliott’s Better Than Well: American Medicine Meets the American Dream: a really interesting philosophical look at not just cosmetic surgery but the whole idea of the self we present to society and the society that passes judgment on the physical self.

Roy Porter’s Blood and Guts: A Short History of Medicine: I love everything I’ve read by Roy Porter, including his 800-page The Greatest Benefit to Mankind: A Medical History of Humanity. This slim volume packs a ton of information on medicine throughout the ages in a compelling, easily digested way.

David Rothman’s Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making: So this one is a bit more dense and scholarly than others, but it is a great read. For me, it helped me contextualize post-World War II medicine and the development of modern clinical trials, research, and patient rights. I have a much better grasp of current ethical situations and challenges now that I have historical context.

Dorothy Wall’s Encounters With the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome: Wall does a skillful job blending personal experience and anecdotal reflection on living with Chronic Fatigue Syndrome with extensive research and interviews on the political and scientific controversies around naming, diagnosing, and managing the condition.

I’m always interested in new titles, so feel free to add your own suggestions to this list.
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