Category Archives: Writing

Getting Out of My Own Way

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I’ve noticed a pattern the past couple of weeks.

I have a lot to say. From following up on the issue of chronic illness and parenting to re-visiting that lofty January goal of balance to so many others things, I do not suffer from lack of ideas.

And yet, whenever it’s time to settle down and crank out a post, I end up reading. Sometimes it’s Penelope Trunk or Dawn Friedman, sometimes it’s Kairol Rostenthal or Duncan Cross or Sick Momma.

What can I say? I’m eclectic.

It’s not an issue of being too sick to write, like I am sometimes, nor is it an issue of competing priorities. (I think I’ve forsaken the idea of negotiating them right now, anyway.)

Instead, it’s idea overload.

And in a much more exaggerated way, the same thing is happening with what appears in my mind as full caps, the much longed-for and equally feared BOOK 2.

I’ve discovered something: I really love research. Getting lost in journals, tracking down archived information, furiously annotating books (and books, and books). Of course I love the writing part, but that was a given. The more research I do, the more I want to write, the more the ideas develop and complicate each other in ways I didn’t foresee.

But the past couple of weeks I’ve found that I’ve used research as a distraction, something tangible I can say I’m doing for the oh-so-demanding BOOK 2, something I know is important to the overall process.

But deep down I know I’m doing it because I have so many ideas in my head, so many images of what material I’ll add to which paragraph and which interviews will flow best, that I’m running in circles.

Now, I’ve tried to be proactive about this. I diligently schedule in daily chunks of writing time, even if it means pulling back-to-back 7-8 hour workdays on the weekend. I precisely list the topics I need to address on a particular day.

I even recently hired a research assistant, who is fabulous and competent and efficient. I make lists for her, and she skillfully completes the tasks and gets me the information I need.

(I know! It’s the best.thing.ever.)

And yet I remain trapped in my own head, word counts taunting me and stacks of research beckoning me.

One of my students wrote recently that the hardest part is the doing—after free-writing and just seeing what comes about is the best way she can eventually get around to her point.

I think that could be the solution. I’m so immersed in ideas that I’m hemming myself in. I need to let go and see what happens, with less analyzing what I need to write or should write and more barebones writing.

Letting go is never easy for me. (Seriously. Ask my husband when it’s midnight and I’m obsessing about something.)

So, deep breath. Write now, worry about structure and voice and perfection later.

At least I got this piece done. It’s a start.

Writers, researchers, and kindred control freaks everywhere, any other tips?

Looking Back, Looking Forward: 2010

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There are so many good year-in-review and decade-in-review memes out there already so while I won’t be joining in on them, I can’t let 2009 slip by without some commentary on it.

In my little corner of the universe, 2009 definitely had its high points: I signed a deal for my second book during a very tough economic spell, I met Bill Clinton and chatted about health care reform, and I pursued new academic and freelance opportunities. I am incredibly grateful for all of these experiences.

I thought and wrote a lot about hope this year, a word that is as closely related to these high notes in my life as it is to the low ones. In fact, I’d argue that when I felt fragmented and run down or when I was disappointed, when all I could do was focus on just making it work, hope was even more important.

I’m not into making resolutions this year. I’d rather take what I’ve learned from 2009 and apply it to 2010. Despite some really great developments, 2009 was a long, tough year, a year that pitted my strengths against my weaknesses in a major way. I am a planner and a control freak, and the more crazy life (and health) gets, my tendency is to push back even harder. I had a ton of pressure on me this year, and so much of what I needed to do hinged on me being able to control the one thing I can never fully control: my health.

In a much broader way, I think 2009 was a year that challenged so many of us on that front, healthy or otherwise: sometimes we can do our very best but other factors can dictate so much of our success or failure.

It is one thing to say that having hope is important, but it is another to be truly willing to accept things that are out of your control, to have hope things will work out even if in the moment, you can’t see how or when. That is the hard part for me, anyway.

When I think about the past year and the past decade, I have to admit that some of the most important and life-changing developments were ones I never planned for, never even knew to look for: meeting my husband (six years ago tonight, actually); getting my MFA, meeting the friends in college, graduate school, and beyond who mean so much and who feel like family; starting this blog; etc.

There are many more examples like this, but the point is, sometimes you just have to be open to chance and possibility. All the planning in the world does not guarantee we will get what it is we think we want, and sometimes we don’t know what we want or need until we find it. At points this year I think I was so bogged down in surviving that I lost sight of the importance of the unexpected, that sometimes hope means trusting in what we cannot yet envision.

In this post, I reflected on the idea that a person needs three things: someone to love, something to do, and something to hope for. This is what I want to carry with me into 2010, and into the next decade.

Have a wonderful (and safe) New Year’s, and may 2010 bring you as much health and peace as possible.

Thank you for reading.

Books Make Great Gifts, Part 2: Personal Picks

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So I can’t very well remind you that books make great gifts without giving you some recommended reading.

In an effort to expedite this post, and therefore expedite any remaining holiday gift purchases, this year I’m calling my list “Off the Top of My Head,” with the somewhat lame yet totally true claim that if I can remember a title at 10 o’clock on a Friday night after a long day, a long week, and a year full of reading and researching, it must be a memorable read.

Right?

(I’m still so fond of the book picks I suggested last year, so give them a second look if you’re interested. I think Abigail Thomas’s A Three Dog Life is one of the most exquisitely written memoirs I’ve ever had the pleasure of reading.)

Nonfiction (memoir, narrative, food, and health):
The Liar’s Club by Mary Carr
Truth and Beauty by Ann Patchett
Atlas of the Human Heart by Ariel Gore
Under the Banner of Heaven by Jon Krakauer
Word Freak by Stefan Fatsis
The Journalist and the Murderer by Janet Malcolm
Reading Lolita in Tehran by Azar Nafisi
In Defense of Food by Michael Pollan
It Must Have Been Something I Ate by Jeffrey Steingarten
Overtreated by Shannon Brownlee
Encounters with the Invisible by Dorothy Wall
Breathing for a Living by Laura Rothenberg
The Autoimmune Epidemic by Donna Jackson Nakazawa
Blood and Guts by Roy Porter
Keep Working, Girlfriend by Rosalind Joffe

Fiction:
Unaccustomed Earth by Jhumpa Lahiri
The Man of My Dreams by Curtis Sittenfeld
Best Friends by Martha Moody
Handle With Care by Jodi Picoult
Certain Girls by Jennifer Weiner
Something Borrowed by Emily Giffin
Dirty Girls’ Social Club by Alisa Valdes-Rodriguez
Olive Kittredge by Elizabeth Strout
White Teeth by Zadie Smith
The Year of Fog by Michelle Richmond
Commencement by J. Courtney Sullivan
The God of Small Things by Arundhati Roy

I’ll probably think of a lot more tomorrow, but I think that’s a wrap for now. As always, please chime in with more suggestions, or feedback on any of the books mentioned above!

Happy shopping…(and don’t forget: whenever possible, support local independent bookstores!)

What Better Gift Than a Good Book?

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Last night at my writing group, a friend asked what we would do if Christmas was a time where we had permission to buy what we really want for ourselves. What, she queried, would we buy?

“Books,” I replied, without a second’s hesitation. Literally, it was the first thing that flew out of my mouth.

And it’s true, though with a caveat. I’d also like time, time to wander through my local independent bookstores. I’d linger over the new nonfiction titles and the paperback originals, I’d wander past the front-of-store displays and hit the aisles, looking for new names and titles.

(I’d also check out the health section to see Life Disrupted, because I’ll be honest, the thrill of seeing it is still there, and I’d try to guess what shelf will someday house Book #2 .)

I’d buy more narrative medicine books, and the engrossing narrative nonfiction titles I love so much. I’d select the breezy, snarky novels I can tear through in an hour, and the literary fiction books I re-read over and over before I go to sleep at night.

And then once I had as many books as I could carry by myself, I’d hunker down with my dogs and the afghan my grandmother (the most avid reader I’ve known) knitted for me, and I’d do nothing but read. No Internet. No clients. No writing. Just time to savor other people’s writing.

So consider this ode to books (and bookstores) a friendly holiday reminder that books make wonderful gifts. Last year, I gave you some personal picks and Best-of lists to consider, and for those of you who haven’t purchased all your presents yet, I thought I’d do so again.

NPR’s Best Books of 2009 is an extensive and eclectic resource, and it includes the Top Picks From Indie Booksellers.

I got my MFA in Nonfiction Writing and am a self-avowed nonfiction junkie, so I was excited to see Salon’s Salon’s Best Nonfiction Books of 2009. Still, I often need a break from true stories, so Salon’s Best Fiction of 2009 was another must-read.

The Wall Street Journal’s Best Health Books of 2009 is another great list to consider.

As for my own list? I’ll own it: end of term grades, client work, research detours, looming word counts, and Christmas-related chaos have all conspired to slow me down, but I’m working on it, and will try to post it soon.

(Don’t forget Life Disrupted is an affordable gift for anyone you know living with chronic illness, or anyone trying to understand what their friends/family members are going through. Okay, obligatory holiday plug finished.)

Do you have any fiction or nonfiction titles you recommend? I’d love to hear them, especially since I haven’t started my holiday shopping yet!

(Gulp.)

When Silence Speaks Volumes

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I read this NYT piece, Are We Going to Let John Die? the other night and am only now just getting around to linking to it. It got me riled up, and like a successful Op-Ed piece should regardless of where we stand, it made me think about the issues involved.

From a research standpoint, health care reform remains on my mind these days. Right now, I’m looking at the civil rights movement, the early AIDS movement, and the disability movement and their influence on chronic illness. In terms of catalysts and goals for the chronic illness community, certainly health care reform is a significant issue. (Stay tuned, as I have a lot more to say about all of that…)

But when I move away from the books, journal articles, and interviews and look at daily life, and the recent content of this blog, I can see I’ve moved away from policy and reform a bit. This past spring and summer, it was hard not write about—from watching webinars that explored private versus public insurance to digesting the health care conversation with Bill Clinton to discussing the particular needs of patients with existing chronic illness, the subject was always fresh in my thoughts.

But lately, not so much. It’s still in the headlines, and I still read the articles. It’s still the topic of morning radio shows, and I still listen to NPR. Yet despite my cognizance of it, and its obvious importance to me as a patient, it hasn’t crept into my own titles and hasn’t been featured in my own writing.

The difference? Honestly, I think a lot of it has to do with the fact that this summer was relatively calm in terms of my health. I could manage the juggling act and stay on top of things with enough mental energy to engage in the dynamic conversation. Since September, I’ve spent 6-7 weeks acutely ill. Now, I am used to this cycle. If you’ve read this blog with any regularity, you’re probably used to it, too. It’s just the way things are when you’re blessed with dodgy lungs and a pathetic immune system and other medical complications right now.

On the positive side, I can say the infections haven’t been as bad or lingered quite as long as they normally would because of the very proactive, very aggressive preventive protocol I have been following since last March.

I’m a walking risk/benefits analysis, really.

While the cycle is all too familiar, what distinguishes it right now is that my workload has never been more intense. When infections sap my energy and consume my already scant hours of sleep, it hits me even harder. Or, to be more blunt, when I am sick it takes every ounce of energy and focus I have to just make it work, to get through the day and accomplish the tasks I need to in order to stay on track.

When I am sick, I fall off Twitter. I become a comments slacker on other blogs, my response time to e-mails takes a notable dive, and I beg off pretty much every commitment. I enter the Black Hole where the only things I can focus on are trying to get air and not falling behind in work. I read articles without comment, I skim headlines without linking.

In short, at times I am too busy being sick to contribute in any meaningful way to the conversation of the very health care reform that could define my patient experience.

Ironic? No, it’s inevitable. It’s life with chronic illness.

I get sucked into the Black Hole of silence even with a ton of local family and friend support, with an amazing husband, a relatively flexible career, a world-class hospital 10 minutes away, a healthy stubborn streak, and twenty-nine years of experience living with illness. Oh, and with very good health insurance.

Scary, when you consider the millions who cannot say the same.

(Also inevitable, rather than ironic: what keeping that wonderful health insurance has cost me so dearly in so many other ways, and how precarious it feels nonetheless.)

I guess I can tell I’m starting to improve. The ability to be riled up is always an encouraging sign.

Disappointment: The Intellectual Opposite of Hope?

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When my agent was shopping my first book out to publishers, it was an incredibly tense time. I’d done all I could do to set myself up right, and now the decision was out of my hands. For a control freak like me, it was an uncomfortable position.

But what made it harder was how much I felt hinged on getting this book under contract. In my mind, everything else I wanted to do depended on getting this deal for this book at this particular time. The next book I wanted to write, and the book after that, and the book after that? They could only happen if this book happened. The fledgling freelance career I wanted to build out? I would have much better standing with a book under my belt. The more stable academic and research positions my newly-minted MFA hinted at? You know what they say—publish or perish. And my very identity as a writer? Well, writers write things, right? Things that get published.

Of course none of those static boundaries were true, and my life and career would have gone on had things not worked out the same way. It is easy to say that, though, because I did get what I wanted then. The script I wrote for myself, the one so meticulously reliant on each step unfolding just so, went (somewhat) as planned.

But what are so much harder—and, unfortunately, so much more common—are the times when we do plan and work towards something and set up a script for ourselves that does not come to fruition. We want so desperately to accomplish a certain goal that it becomes difficult to see ourselves in any other reality. I see this in my students who are applying for jobs, my consulting clients who are applying to schools or trying to secure agents, and of course I see it so often in the lives of patients. We want a last-ditch medication to do all the things it promises it might; we want the much-anticipated surgery to be 100 percent successful; we want that super-star specialist to give us the answers we need to hear.

We carefully construct this eventual outcome, and we cling to the promise of that better reality because that’s what we need to do to push through all the obstacles and hard work necessary to have a shot of getting there.

We hope for the best, because it is not unreasonable to hope for good things.

Because we have hope we can keep sending out submissions while the editors’ rejection letters accumulate, or the job offers don’t appear, or the letters that arrive in the mailbox are too thin. Because we have hope we work through the side effects of medications, or gear ourselves up for the major surgery and lengthy rehabilitation, or undertake medical interventions with high risk and limited chance of success.

I’ve often heard that the opposite of hope is despair. I don’t disagree with that, but I think the situation is far more nuanced. In the immediate moments of bad news, setbacks, and realizations that what we want is not going to happen, despair is real, and it is palpable. It is the moment when hope does not seem possible. It is an innate emotional reaction, one that manifests itself in different ways: tears that come without warning; numbness; a feeling of emptiness. It is encompassing and isolating. It pulls us off our center of gravity.

But there is an intellectual component to an otherwise emotional experience, and I think that is where disappointment comes into play. Disappointment is not as overwhelming as despair, but it makes demands of us. We have invested so much time and energy into one path, and it didn’t work out. Now where we do we channel that energy and momentum?

It’s a question of readjusting our expectations, and re-calibrating our goals. Whether it was getting a certain job, having a successful surgery, or any number of other realities, when we envisioned the “after,” we saw things unfolding a certain way. We have to write ourselves a new script, and in our disappointment, we don’t always want to do that. New deadlines need to be set, new strategies need to be formulated.

Sometimes, if we’re lucky, our re-writing is only temporary. Sometimes, it is life-changing.

I am often amazed at the capacity we have to hold out for the best possible outcome even in the face of very low odds: when early indications and test results don’t look promising, when other people’s envelopes already arrived and we are still waiting, when it has been three months and an editor hasn’t gotten back to us, or deep down we know we’re not really feeling any improvement on a new medication but we resolve to give it more time.

This capacity for hope is wily like that. It is stubborn, sometimes willfully so. But because of that, eventually we are able to envision other possibilities and are willing to pick ourselves up and start again.

Static

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Things have been a little crazed lately. There’s been a lot of health-related static taking over the scene offline, and on the heels of my last post on priorities, I’m trying to strike a balance.

I have stories to tell, but sometimes the stories that most need telling need the longest time to settle, so their many threads come together in a way that is cohesive, not chaotic; so the story is tempered and not reactionary. And sometimes the stories that matter the most are not always solely ours to tell.

While my posting has been light the past couple of weeks, I have tried to keep up with blog posts and headlines. No matter what else is going on and how many roles I find myself trying to manage, I will always be a reader.

So in lieu of the many posts swirling around that are not quite ready for editing, I offer instead a smattering of headlines that cut through the static this past week.

I’ve seen a number of stories on the new research that suggests a connection between chronic fatigue syndrome and a retrovirus, and I was pleased to see this news article, in which pain advocate and For Grace founder Cynthia Toussaint is interviewed. I’ve interviewed Cynthia several times regarding pain and gender, and find her story compelling.

I spent a lot of time the past month researching early AIDS activism and its relationship to other political and patient movements. I have a few students in different courses researching and writing about various aspects of HIV/AIDS right now, too, so it’s been an interesting time of intersection. As such, I was particularly interested in this NYT article, “Obama Lifts Ban on Entry Into U.S. by HIV-Positive People.”

According to the article, “The United States is one of only about a dozen countries that bar people who have H.I.V., the virus that causes AIDS.”

Now, I could write several posts on this topic (give me time) but I’ll start with the obvious: it’s about time that archaic guidelines based on fears and lack of knowledge/understanding of the disease were updated to reflect the realities of the HIV/AIDS and the respect that patients living with it deserve.

And moving from news and policy to the relationship realm, I spotted this submission in the Boston Globe’s Love Letters forum: “She Has Cancer and I Want Out.” A cursory glance at the headline might warrant immediate reactions, but read on: I agree with Meredith Goldstein that the larger issue here isn’t the cancer, it’s the letter-writer’s inability to be honest from the get-go.

And with that, another weekend is almost over, and another week of headlines is about to begin.

Priorities

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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.

Priorities.

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?

These Three Things

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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.

Just Make It Work

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One of the wisest people I’ve talked to is Vicki, the thirty-something patient with cystic fibrosis I interviewed extensively for Life Disrupted. Chapter Seven (“Salient Suffering”) details a conversation we had about suffering:

“For years, people have told her [Vicki] how brave she is, how strong and resilient she must be to endure the many complications of her illness. They are likely referring to her ever-present cough, her intrusive feeding tube, or her very basic struggle to get enough air…Some people assume that by virtue of these physical symptoms, Vicki is somehow naturally equipped to handle them. She disagrees with this all-too-common assumption…She puts up with the disruptions and the bodily complaints because she has to, something perhaps healthy people don’t always consider.” (42)

I had a somewhat similar conversation with Kairol Rosenthal, author of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, for a different project. You’ll hear more about it down the road, but we talked a lot about cancer mythology and the idea that having cancer makes you stronger, or more spiritual, or more ____(insert adjective of choice here).

What if you were already strong before cancer? What if you endure it all because the other option is not enduring it and knowing you might die?

Anyway, I had all of this on my mind this weekend after talking about work with a friend of mine.

“It’s amazing what you can do when you have no choice,” I said. It was a light-hearted conversation about work ethic, but my smile didn’t mean I wasn’t completely serious.

And it’s true. When you have obligations and deadlines it doesn’t matter if you’re overcommitted or tired or would rather get home earlier—you get it done. I think pretty much everyone from all walks of work life can relate to that.

My desk at work is pretty much empty; everything I need is in my laptop or my briefcase. Years of hospital packing have conditioned me to have everything I need to be able to work at all times with me wherever I go. But my office at home is the opposite. I spend more time there (a couple weekdays, most weeknights, and weekends) and it shows. My desk area is the epitome of organized chaos—folders and papers and notes and staplers and binder clips and books and coffee cups litter to desktop, flanked by stacks of folders and more piles of books (and often, dog bones and half-chewed tennis balls) on the floor.

Above the desk hangs a combination magnetic wipe board/bulletin board, adorned with post-it notes, quotes, forms, phone numbers, etc. At the very top is a quote one from one my graduate school professors. It is simple and precise, and I find I need to look up at it every day:

“There is nothing as clarifying as a deadline.”

Writers, I am sure you can relate to this, that you have stayed at your computers until 3am or gotten out of bed when it is still dark and skipped meals and plans and, oh, entire weekends or vacations, to meet your deadline. When you want something badly enough, you make it work, like this writer I’ve followed for a couple of years, who steals every possible chance to work on her writing: before work, after work, and every weekend. Her book recently published.

It may have been born out of a writing workshop, but again this quote is far more universal. Even when it isn’t easy or doesn’t even seem possible, we make our personal definition of a “deadline” work: the mother who was up all night with a sick baby still goes about her day with no sleep; the working parents with crammed schedules make it to the teacher’s meeting and deal with the work consequences when they should be going to bed; the financially strapped student takes on another part-time job while juggling classes and internships and expectations from so many people.

It is amazing what you can do when you have no choice. It is not always ideal and it is not something you can sustain forever but sometimes you just have to take a deep breath, vow not to think about it too much, and plow through it. It could be finishing grad school, or completing a medical residency, or working on a huge client project. Or it could be dragging yourself through the machinations of your day when all you want to do is sleep.

When it comes to health, I agree with Vicki’s sentiment that much of what we do as patients is because the choice not to do it is simply not viable. I do not think moral attributes need to be part of what is largely pragmatic.

Chronic illness complicates the daily negotiations and moments where we just need to make it work that we all face. For example, we might not take that sick day when we’re feeling under the weather with “normal” stuff, the same sick day healthy people might take, because we know that while we feel miserable with this cold or headache now, we might really need the sick day for pneumonia or a severe flare. Necessity dictates that we make our decisions based on a different rubric. Sound familiar?

We might totally over-commit in the moment and pull long days when we’re feeling okay because we know our ability to be productive is not in our control when we get worse. How many times have you been there?

I can’t help but think about the time I had to facilitate a three-hour graduate school seminar fresh from a hospital discharge. By “fresh” I mean I bargained for a morning release so I could make the class on time, changed back into the clothes I’d worn to the ER seven days earlier, and had my (very skeptical) mother drive me the few city blocks from the hospital to my campus. In my haste to get my materials together and my exhaustion from the hospitalization I forgot to take off my hospital bracelet, and I know I sounded terrible. It wasn’t ideal and it certainly wasn’t preferable, but I got it done. I knew there would likely be other times in the semester when I wouldn’t be released in time, and I couldn’t afford to take an incomplete in the course.

It may sound like a crazily stubborn thing to do, but I didn’t see a choice at the time. Or perhaps more accurately, I knew all too well what it felt like to really not have a choice, to be stuck in that hospital bed, and it wasn’t an opportunity I was going to squander. Accountability is still important, even when you’re not feeling spectacular. I bet you can relate to that.

In the end, maybe this circuitous post is really nothing more than a pep talk for everyone out there feeling a little overwhelmed or a little unsure of how you will reach your goals but you know somehow you will. When I look at the quotes I’ve collected here, I am glad there are people who have been there who can remind me of that sometimes. Or, you know, today.