Pub Date Reflections, Paperback Release, Spring Events, (and More)

Thank goodness it’s April! While winter often felt endless this year, now that it’s finally spring and the illnesses and setbacks are behind us, I realize I need to post some updates about some great events lined up for the next few months.

Incredibly, a year ago today was the official pub date for In the Kingdom of the Sick. I more grateful than ever for the constant support, encouragement, and enthusiasm for the book and the issues it raises, for the press and publicity it received last spring, and the ongoing interest and opportunities to discuss these issues further. The paperback version of In the Kingdom of the Sick is set to pub this July, and I’m looking forward to more events, posts, and activities leading up to that.

On May 3, my friend Cheryl Alkon and I are presenting a session on writing nonfiction/health books at Grub Street’s Muse and the Marketplace literary conference at the Boston Park Plaza Hotel. It’s a wonderful three-day event “designed to give aspiring writers a better understanding about the craft of writing fiction and non-fiction, to prepare them for the changing world of publishing and promotion, and to create opportunities for meaningful networking.” I always wanted to attend when I was in graduate school and just starting to look for an agent, so I am really thrilled to be able to present.

If you’re in the Madison, WI area, I’m participating in a panel on electronic medical records at the University of Wisconsin-Madison on May 9. It is described as “a free public dialogue exploring electronic medical records (EMRs), a rapidly disseminating technology with great potential impact,” and is free and open to the public.

More locally, I’m participating in the “Connected Patient Panel: Exploring the Role of Online Patient Support Communities, Twitter Chats and Patient Advocacy” for the New England Society for Healthcare Communication’s Spring Conference (NESHCO). It’s on Thursday, May 15, 2014 from 12-1 pm at the Mystic Marriott Hotel & Spa, Mystic, CT.

And up next on the personal side? An update on my C25K training and thoughts on why I really like running—even if I am still a struggling novice.

Thanks again for all your support, and for listening despite the unintended silences!

Burnout…(And Finding a Way Back)

Now that things are settled down and more predictable after a long, hectic fall, I’ve struggled a bit to find my footing here. For so long, ideas and essays about living with chronic illness were natural and easy for me to develop: chronic illness and relationships; chronic illness and employment; chronic illness and pregnancy/infertility; and parenting with chronic illness, just to name a few.

More recently, the ideas aren’t so easy. Part of it is just plain old burnout, the inevitable physical and emotional fallout of the intensive process of researching, writing, revising, and promoting a book. If I don’t have a strong idea, I just don’t write. I can’t, so I wait until it feels right. It’s not an ideal way to keep up subscriber numbers and analytics, but it’s how I roll.

But it’s more than that, I think. I have a job, I have a writing career, I have a preschooler and a husband who deserve the best of me, I have family members with medical needs. The other spheres of my life take up so much of my head and my heart that there isn’t a lot of room left to talk about or think about chronic illness or to be a patient. This is partly possible because I am pretty stable right now and don’t have to deal with the major upheavals of my own hospitalizations and setbacks. It’s a lot harder to ignore chronic illness when its needs are immediate and non-negotiable.

Don’t get me wrong, illness is a part of my everyday life, from the crazy scheduling maneuvers to work in chest physiotherapy every day (or late at night, as it were) to running out of breath when I’m reading bedtime books to my daughter to the days when I just have no energy and wonder how I’ll last the long commute home. But papers still need to be graded, deadlines still need to be met, my daughter still has swim class, and the household still needs running. In many ways, I can’t afford to be slowed down by illness right now, and while I recognize such stability is borrowed time, I’m grateful for it when I have it.

Slowly, though, the ideas are starting to percolate again. I’m pitching ideas to editors. I’m posting here. I’m being more discerning about how much I say “yes” to and learning to say “no” more. Maybe they aren’t as personal and anecdotal about living with illness as they once were, but the ideas are there nonetheless. As a writer and as a patient, I’m just in a different place, but I’m starting to see that too is an inevitable thing, and I’m figuring out how to make these changing identities coalesce a little better.

Making Order Out of Chaos

When I read Duncan Cross’s prompt for the latest edition of the Patients For A Moments blog carnival, which asks how we recharge, I was sitting in my home office. Stacks of bills and paperwork that needed to be filed took up most of the desk space. An assortment of mail, cards, and other mementos took up residence on top of the filing cabinet, patiently waiting to be stored more permanently. Folders filled with journal articles and research piled up in leaning towers on the floor, competing with books I need to read and review, files to read through for my teaching and research projects, and various stickers and drawings from my trusty little assistant.

In short, my home office reflected the state of my life the past several months—exciting and productive but incredibly intense and long, too. (Teaching an overload (4 courses), managing the pre-launch book tour and subsequent book tour, doing in-person book events and interviews, freelancing, helping out with care before and after my father’s transplant, etc.)

Having all these very big things happen all at once equals a lot of emotion, a lot of responsibilities, and very little sleep. My husband works weekends, too, and with some juggling the two of us we kept up with the basics: laundry, weekly cleaning (dusting/vacuuming/scrubbing), cooking, etc.

But the long-term stuff? The filing, the organizing of pantry and shelves, the sorting through drawers, the de-cluttering and boxing up of old toys and games? All that stuff slipped to the wayside. We were just trying to keep up with the everyday stuff; filing paperwork was just not a priority.

This all goes back to the central question Duncan Cross asks—what do we do to recharge when we are run down? After reading it, I ignored the looming deadlines, closed down my laptop, and spent some time organizing my office. The desktop was pristine. Each scrap of paper had its rightful folder. Each stack of folders had its rightful drawer. I felt a little less burnt out and frazzled.

For a moment, I debated sitting back down and tackling the deadlines, but something in me just couldn’t. I’d done that at the expense of so much for so long.

So then came clearing out all our drawers and closets, then the intense dusting behind and underneath the furniture, and I felt even less burnt out and frazzled. Then came the whole downstairs, too. A couple hours later, I flopped down on the couch, wheezy and exhausted, but it was the first time in so long I felt settled. Even though I was incredibly sleep deprived and getting over a sinus infection, I felt so energized.

While the examples are not always so extreme and time-consuming, I realized after the fact that putting my life into order in the midst of chaos is something that always makes me feel a little better. Even something as small as writing out a To Do list has the power to both calm and recharge me when I am a hospital patient and I am physically unable to make order out of the chaos.

After a 14-hour stint at the hospital the day of my father’s transplant, my husband made sure the house was clean and organized before I got home, because he knew it would make me feel better to have things orderly when I was in such an emotional state.

My office is now a sunny, neat place to get work done, instead of a omnipresent reminder of how frenzied the past few months have been, and putting more order back into the household makes me feel like I have more control over my life in general.

How do you recharge? What do you do when life and stress and illness start to spiral?

It’s Official!

in-the-kingdomAs of yesterday, In the Kingdom of the Sick is officially available in bookstores and online.

I have so much more to say about all of this, and about writing and audience and lots of other things, but this week, I’m simply juggling virtual events, in-person events, the end-of-semester crunch, and the like.

So let me say the most important thing of all—thank you! To those of you in real life who have supported me and helped me find time to write, to those of you who are virtual cheerleaders, to those of you who gave me your time and insights along the way, and to all of you who have shared links, posted items, and plan to read the book. I can’t wait to hear your thoughts.

Yesterday, I had the pleasure of doing a Q&A with Paula Kamen over at Ms. Magazine’s blog. There are lots of other links to share in the coming days, but here’s an important update: my segment for Fresh Air will run tomorrow, April 11. The show runs 1-2pm; check your local public radio stations or listen online.

(I will be doing an Author event at Northeastern during that time, so you’ll hear it before I do. Be kind ☺)

Spring Preview: In the Kingdom of the Sick Pub Date, Book Events, and More

in-the-kingdomAs you know, I wrote another book.

You might not know that its release date is right around the corner: APRIL 9, 2013.

I am pretty excited to share this with you.

In the Kingdom of the Sick: A Social History of Chronic Illness In America
is available on pre-order now, and you can read more about in this starred review from Booklist.

If you’re local to the Boston area, I want to share two key author events. I would love to see you there!

1. On April 11, I will be doing a Meet the Author discussion and book signing at Northeastern University at noon. (I teach at Northeastern, so this is especially cool for me.)

2. On April 17, I will doing a reading at Brookline Booksmith at 7pm. This is one of my favorite bookstores around, and I can’t wait.

I am also really excited to announce that from late March throughout April, I am doing a virtual book tour with interviews, reviews, giveaways, and other events on different sites across the Internet, so no matter where you are, you can still be involved. I have some seriously amazing, insightful, and gracious people involved in this, and I will link to all of it from this blog.

I will also be posting events, reviews, and other press on my new Facebook page and on Twitter, so you can follow me there, too. The book explores patient rights, gender and pain, social media and patient advocacy, as well as the influence of science, technology, and culture on the experience of chronic illness (and more), and after all this time, I can’t wait to see it out in print and in readers’ hands.

Stay tuned!

Living the Dream (Or, It Takes a Village)

Every now and then, like when it’s well past midnight and I’m setting my alarm for 4:45 so I can get some work done, or when we’re trading notes on how many loads of laundry and changes of clothes Norovirus necessitated, my husband and I will mutter “Living the dream,” and smile (smirk?) at each other.

Of course we always say it in jest, and because sometimes a little levity can make another pre-dawn computer session or raging case of toddler vomit a bit more manageable.

The thing is, though, we really are. Living the dream, that is—our particular notion of what a dream should look like, anyway, and all the lack of sleep and crazy juggling and contagious viruses and daily minutiae pale in the face of that.

I don’t like winter. The days are too dark, everyone is sicker more often, and this winter there are just too many variables to manage—teaching, side projects, book launch, merit review, household maintenance, chest PT, and of course, the really heavy stuff, like watching my father’s kidney failure progress and working on the logistics of a transplant and medically complex post-op care plans. I am tired, and I just want it to be spring.

The irony that spring represents hope and renewal is not lost on me. (But really, I’d be happy with weather warm enough for a trip to the playground, or possibly a nap.)

Anyway, as we claw our way through this snowbound February (and yes, it really is starting to stay lighter later on), I’ve taken to re-framing how I think about nineteen-hour days and the often overwhelming nature of the here and now.

Living the dream. We have a happy, healthy, joyful little girl. When she is at school, she is in a wonderful place where she is loved and where she is thriving. I get to spend so much time with her every day, a lot more time than I would in other professions, and I try not to take that for granted, ever. We go to the library and playspaces and gymnastics class, we do playgroups and playdates. We read books on the couch and hide treasures in her tent and I try to say yes to finger paints more often than not—“Just throw me in the tub right after, okay, Mama?” All the other stress and sadness and obligations of life fade away.

Part of this is because higher education is a bit more flexible schedule-wise, part of this is because I am willing to work late nights and early mornings, and a huge part of it is because I work for a wonderful institution with accommodating superiors and administrators. They support me and allow me to do what I enjoy with students I enjoy. There is room for professional growth, and innovation and initiative is rewarded with responsibility and recognition.

I have an agent and a publishing team who have been equally accommodating, and whose guidance has really helped my writing career. And lately (stay tuned) some incredible writing opportunities have come my way, things I wouldn’t have thought possible if I had sought them out myself, and all I can do is be grateful and give them my all.

My husband is almost two years into starting his own business, and while the hours are long for all of us, the benefits outweigh the (many) stresses. Seeing him get great press or expand his production facilities to meet increased demand is nice, of course. But knowing he is doing something he believes in, and something that while grueling, allows him the flexibility to come to her doctor appointments, drop her off at school, and be present in so many aspects of her daily life, is even better.

Along the way, we’ve been blessed personally and professionally with mentors and cheerleaders, those whose encouragement, advice, and enthusiasm have helped us to take risks and fight for the life we want.

Way back in the day, I wrote this post on how it takes a village when it comes to having chronic illness and raising children. And it absolutely does—when she’s sick or I’m sick or we’re both sick, we need helping hands. But unsurprisingly, my pre-child understanding of that village was a bit narrow.

The village stretches far beyond those who can help out when we’re sick, or watch our daughter so I can go to the hospital. It also includes the cheerleaders and the mentors, the bosses and the schedulers and the administrative staff, the professional colleagues who go out of their way, the doctors, nurse practitioners, and nurses who manage our conditions, my physical therapists, the daycare staff, and so many more. It’s the family and friends who are a constant, and those who understand when life gets complicated and we fall off the radar.

If I’ve learned anything in the months since we started looking for a living donor for my father and we’ve witnessed the amazing outpouring of support and sacrifice, it’s that the web of people who care is intricately linked and stretched out beyond our immediate circle, and beyond the circle beyond that circle, even.

I won’t deny this is a hard season we’re in, in every sense of the term. As is always the way, it seems like there are so many exciting things going on right when so many tough things are. I know things will get easier soon, when the book is launched and I’m feeling better and the work winds down a bit. I also know that things could get much harder before they begin to get easier. I can’t wait for spring, but the enormity of what could happen between now and then is hard to translate.

For now, I am keenly aware of all the scaffolding that exists that supports us and enables us to live this dream, in all its imperfections.

Letting Go

“I love you! Bye bye!”

And with that, she was too engrossed in arts and crafts to give much notice to our leaving. I spied a glimpse of her through the window as we crossed the parking lot: earnest, happy, comfortable.

As far as first days of school go, it was a success. (She’s not quite two so it’s a daycare at a school, but she likes calling it school and feeling like a big kid.)

There is so much I am excited for her to learn. Now, she’s known all her colors, numbers, and letters for a really long time, is good with self-care, and says “please,” “thank you,” and “bless you” when people sneeze. Those aren’t the kinds of lessons that matter to me right now. Instead, I am eager for her to socialize. To learn to share, and to cultivate an awareness of others and their needs in relation to her needs and her wants. To learn how to situate herself and her personality within a group of peers, and to remain confident in her ability to play and discover independently, too. I am excited to see how she grows and changes from these oh-so-important life lessons.

It’s a big change for our family, out-of-home care, and we love the place—dedicated staff, part-time hours that meet our needs, and wonderful activities and opportunities. It’s a good change, and she is thriving there, so it is time to give her the space to do that. But it represents the beginning of so much: the little world she has known so far is getting bigger, and for the first time, people beyond our relatives and our close friends will have direct influence on her. This is all natural and normal, but letting go…it is not easy.

I tend to think in semesters, an inevitable byproduct of twenty-one years of schooling and now several years teaching in universities. September always feels more like a new year than January 1 does, so it is fitting that so many things are transitioning right now.

The final copy edits are done on my book, which is now with the typesetter. I should see proof pages soon. Obviously I feel an enormous sense of relief to be at this stage, but it’s also unsettling. Maybe this is a normal part of writing, but right now, I am overwhelmed by the idea that this is final, there is nothing more I can add or change. Right now, as it turns from a marked-up manuscript into an actual book, I am plagued with what isn’t there, the themes and ideas that I didn’t delve into. Scope is incredibly hard to manage, and while intellectually I know I can’t include everything that’s ever interested me or is somewhat related to my topic or I’ll have a thousand pages, I can’t quite silence the little voice that asks, “What about…?”

I tell myself I’ve done the best I can, I’ve put in the hours and the revisions and asked the right questions and now it is out of my hands. Soon these pages will be out in the wide world, and so many more eyes will see them beyond the tight little circle of readers and editors I’ve had. The words will have to stand on their own, and it is time to give them the space to do that.

It is normal, it is natural, it is the progression of things.

But when pieces of your heart are out there, the letting go? It is not easy.

Home

It’s been quiet around here, quieter than I’d planned but so much of this summer has not exactly gone according to plan, so I’m trying to roll with that.

Since we last spoke about Lyme disease and its co-infections, we’ve had weeks of renovations, moving, unpacking, some health crises, etc., but we’re finally getting settled.

There is a whole lot of “new”—new town, new house, new physical therapist, new job responsibilities, and more, right now.

But in spite of the long (hot) hours working on the house, the juggling, and the overall upheaval of the past couple months, it’s beginning to feel like home. My office is unpacked, and my desk overlooks a window with a stream of sunshine and a rather bucolic view. My daughter knows where all her toys and books belong, and loves her yard and her porch. “Hello, new house!” she exclaims when we pull into the neeighborhood. “Goodbye new house! Goodbye flowers and trees and water table!” she calls merrily when we leave.

And it feels like more than simply new; it feels like the beginning of something better. There is a lot say about that, and about getting a new physical therapist, and about juggling work and illness, and about parenting an almost-two-year-old, and so much other stuff.

(And I just got my copy edits on my manuscript back—I have an ISBN, people. This is getting real!)

Now that my physical space is sorted a bit, I’m finding my mental space is realigning too, and I can better focus on this virtual space. I’m working on a bunch of posts, and more long-term, working on a new look and feel.

For a long time, I’ve struggled to regain my rhythm. Life needed a reset button, and I think I found it.

Have a great weekend!

Weekly Grace 4

I had big plans for Spring Break—fun activities and play dates with my daughter, final round revisions, finishing the drafts of multiple blog posts, spring cleaning, etc. Instead, the week of Spring Break became known as the second week of the Late Winter Plague in these parts, with Baby Girl getting hit the hardest and the longest, so plans changed a little. While I catch my breath and catch up on life a bit, a quick nod to (Weekly) Grace in Small Things.

1. I don’t like the reason why my sick little girl was so sad and needed so many extra cuddles the past couple weeks, but I am very grateful that I could be there to give them to her when she needed me. This unorthodox schedule I keep has some challenges, but the benefits? Priceless. Truly.

2. A pediatrics group who not only responds to calls quickly and books in appointments on the spot but also has nurses and nurse practitioners who call on their own first thing in the morning and just before leaving at night just to check in on Baby Girl because they are thinking of her.

3. Longer days and mild weather, which brightens my mood and reminds me of all the playground and play time possibilities that await us this spring.

4. A Friday night off from any true work, which means time for putting laundry away, blogging, and perhaps even reading a book for pleasure (gasp!). It’s been way too many months since I had one of these nights.

5. I spend so much time commenting on writing and doing so much writing and revising on my own that I have been a bit of a slacker in terms of posting. But I am always reading, and figure it’s worth a shout-out to some of the blogs I frequent these days:

Pop Health

Mamapundit

Flux Capacitor

Aisha Iqbal

Sprogblogger

Necessary Cuts (Or, the problem with outcomes)

When I was in graduate school, I wrote a novel. It wasn’t particularly good, and it won’t ever see the light of day now that workshop days are over, but there was one section in one chapter I adored. I revised it over and over until each word felt perfect, until the description was just right, the details distinct and evocative. It was one of my better pieces of writing, and for a long time I resisted what I knew deep down was true: I needed to cut it. It just wasn’t working for that section, and keeping it there because I liked the writing threatened the integrity of the project.

A few weeks ago, I was feverishly revising the last couple chapters of my book. They were rougher chapters—big, unwieldy, complex chapters that I threw all kinds of ideas into, knowing they needed refining and chopping. And late one night I realized I needed to cut a whole interview portion I really liked, about a subtopic that was really interesting. As strong as the ideas were, they weren’t essential to the chapter’s narrative. In fact, they prevented the arc I needed from forming.

I knew what I needed to do, but it was still hard. Hard to see that even if that section didn’t make the cut, that it was still valuable, that it was still a part of the process involved in writing and drafting a successful chapter.

I thought about that after I cut it, and looked around at the piles and piles of research stacked up all over my office—not to mention the thousands of electronic resources filed away in Gmail folders. How many of those have I read and forgotten? More than that, how many of those did I annotate and underline, scribbling notes on and tagging for use in iterations of chapters that don’t even exist anymore? I spent years compiling research, and what is staggering to me isn’t the amount that made it into the book, but what didn’t.

And yet it is all part of it, it all contributed to the process that ultimately resulted in a full draft of the book. Whether it led me to another source that proved useful, whether it sparked a question I asked during an interview, or if it just expanded my understanding and fluency on a particular topic, each piece had a role.

For better and worse, I am an outcome-based person. As a child, I cared more about my grades than my parents ever did. I see traces of myself in the students who bemoan a B+, who ask not how they can improve their writing but how they can get an A, who have a difficult time seeing that huge improvement from a rough draft to a final draft is an indication of success. I can empathize with that struggle.

The older I get, the less useful an outcome-based perspective seems. Perhaps it’s because so much of life resists clear-cut outcomes like grades or test scores. I know writing certainly does. Even though I am ranked and evaluated every academic year, I find it is the student feedback I get that is most meaningful to me. Maybe it’s also because the older you get and the more you risk, the more failure you open yourself up to, and sometimes all you are left with when things fall apart is the journey itself.

(Small proof I have evolved? I lose every.single.game of Words with Friends, yet I keep accepting rematches with my husband and (gasp!) still find it fun, anyway.)

Clearly, being a patient with incurable conditions has shifted my perceptions on outcomes. It’s not a question of the ultimate outcome—a cure—but more an issue of the everyday ebbs and flows of chronic illness. We can take the medications and follow the rules and still experience flares, but that doesn’t mean there isn’t inherent worth in keeping up with the minutia of daily maintenance and preventive strategies to minimize disease progression.

And becoming a parent? That has been the biggest influence of all. After our long journey to parenthood, and the intensity of our high-risk pregnancy, I have seen what is possible when we let go of outcomes altogether and the end result surpasses every expectation or dream we ever had. Watching this little girl grow into her own unique, independent person is a daily reminder that living in the moment, that appreciating the journey and the discovery, is a blessing.

I delight in what I learn she knows, and I love when she bursts out with new words, or recognizes new letters, or figures out how to do something new. But I find that the older she gets and the more she shares with us, I care less and less about pre-school placement, kindergarten readiness, or summer camp enrichment. I want the smile of pride she gets when she screws a bottle cap back on a seltzer, draws a picture, or drinks from a cup without a lid, the earnest smile that lights up her whole face, to follow her—no matter the spilled cups, the missteps, the experiments that don’t pan out as planned.

For an incredibly thoughtful, candid view on outcome-based parenting, I recommend Katie Allison Granju’s post on Babble. In a nod to writing, parenting, and (Weekly) Grace in Small Things, four other posts I am grateful for and suggest you read are
Aisha’s post on being present, Maggie May’s post on being a “good enough” mother, Glennon’s Momastery post on gifts and talents, and Brooke’s post on choosing love again.