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.

On the Working, Parenting, and Chronic Illness (Take 2)

Spring semester starts tomorrow.

My syllabi and rosters are printed, my lesson plans are set, my work clothes are ready and my bag is packed. A meticulously detailed schedule for completing my book revisions during the semester is open on a Stickie note on desktop, and my January Google calendar is updated with deadlines, reminders, Mother Goose Story time, playgroups, and meetings.

I spent last night making a huge batch of homemade chicken vegetable soup for lunch for my girl, and several dinners’ worth of a roasted vegetables/turkey/GF pasta dish for her, with extra to freeze.

I always start the new semester with such good intentions of getting it all done, of sticking to the very detailed schedule. I know going in it probably won’t happen, but I’m learning to prioritize so that the most important tasks get the best of me.

A few months ago I wrote a post on working, parenting, and chronic illness and promised a follow-up on the more practical aspects of getting it all done. The fact that it took me about three months to do so should tell you I don’t have a ton of credibility in that department right now, but here’s what I’ve been doing when I haven’t been blogging.

For the most basic stuff, let’s start with the fact I make lists—daily, weekly, and monthly. I can’t go to sleep without my to do list for the following day set.

It is really important to me that my daughter eat healthy, whole foods—no junk food, no processed food, no baby food—so I spend a lot of time on the weekends (Saturday or Sunday night, usually) making a bunch of different meals (homemade stock/soups, pastas, risotto, roasted vegetables, stir fry, etc.) I put a lot of them in the freezer so that if we don’t all eat together before her bedtime, or we’re out doing an activity and then we have to squeeze chest PT in right around dinnertime, I always have something healthy and flavorful for her. She adores spicy and sour foods, and her favorite right now is hummus—she loves it so much we’re going to try and make our own next weekend so we can add extra spice to it.

I take advantage of any available work time. For example, her naptime is automatically my work time, seven days a week. (Not housework time, but writing, editing, or evaluating student papers, etc.) She goes to bed around 7:30pm, so typically six nights a week I plan to work at least a few hours between her bedtime and mine.

I am a lot more flexible with my notions of when things should get done. Laundry? I fold it at 11pm, when I’ve closed my laptop and unwind with The Daily Show. If I happen to be home for an extra hour in the morning and know I will be busy late in the day, I’ll throw a bunch of chicken pieces in the oven while I make my morning coffee. (Not appetizing, but I might as well use the time while I have it.)

Like pretty much all of us, I multitask—but I’ve gotten a little better about having more discretion about what things are appropriate for that. Cleaning the kitchen or cooking dinner while returning a phone call is one thing. Trying to conduct an interview while juggling projectile vomit or doing a bottle feed never worked out that well for me.

For better or worse, I have a sort of tunnel vision, particularly during the academic year. I don’t expect free time, and I don’t want to squander any time, either. I usually know I will need to work at least one weekend night, and I am okay with it because it is more stressful for me to have things outstanding than it is to just get it done. This time when she is young won’t last forever, and I don’t want to miss any of it. When the deadlines and the course work and the chest PT and the appointments and the laundry and the scheduled-ness begins to feel like there is never a single moment to just be, I know that the hard stuff is temporary, too.

And well worth it. (What is that famous quote? “I never said it would be easy; I only said it would be worth it?” I’m a fan.)

But there are some things I am going to try to do better this semester. I mentioned wanting to be more presentin more aspects of my life. I am hoping to bring home less work from campus (physically and mentally) by using office hours more productively. I’m going to try going into campus much earlier in the morning to work on the book then, so I meet my revisions deadline. I am going to try and keep my laptop upstairs in my office more, so that when I finish at night I am truly done and whatever I am doing—talking with my husband, watching something on DVR, etc—gets my full attention. Little things, but hopefully things that will make me feel like I have more space to just be.

I know a lot of this is obvious stuff, but somehow putting it down gives me more accountability. What about you? What things do you do to manage working, parenting, and chronic illness? What strategies have helped you be more present, or helped you save time?

On New Year's

Happy New Year!

I didn’t write a 2011-in-review post, but I do think my first post of 2012 will cover that anyway.

Just before New Year’s last year, I wrote that 2010 was the year of the baby, and all that entailed.

Looking back, I’d have to say that 2011 was the year of figuring out where to place everything else in my life, since my baby comes first.

I remember writing Bring It, 2011 , so vividly. I was sitting at our breakfast bar late at night, and I could see my reflection in the kitchen window as I hunched over my laptop. I was days away from starting my first full-time semester, though I’d gone back to work on a more flexible schedule a few weeks after she was born. I wrote how my biggest concern was figuring out how to balance it all—a young infant, a job, a book, health needs, family health needs, etc.

I wrote about working and chronic illness, and discussed another huge change in our lives—my husband’s company, The Well Fed Dog.

I savored every morningspent with my giggling, wriggling little baby, who quickly became a a signing, walking, talking, exploring, pointing, dancing, chair-climbing, fork-wielding toddler. No matter what else was going on, how many stresses and anxieties, obligations and expectations the year presented, as long as she was okay, nothing else mattered.

And as the year progressed, and after some successes and some misfires, I came to the conclusion that sometimes, balance isn’t possible and knowing how to prioritize is much more important than that ever-elusive notion of balance.

I’ve come a long way since that night a year ago when I was nervous about making all of this work. When I think about what I want for 2012—for my daughter, for myself, for my family, for the rest of the roles in my life—I want to be as present as possible.

Sure, I have more concrete goals: finish my book revisions by February 1; implement some new strategies in my courses; be more consistent in attending playdates and playgroups with my daughter; getting back to more regular group classes at the gym; keeping in better touch with friends, etc.

But the larger theme that ties all of those smaller threads together is being present. It is something I have done well with my daughter—each day, the time I spend with her is hers, whether we’re playing in her room, at music class, or at a playgroup. No laptop, no television, no scrolling through Facebook updates on my phone. The time with her is precious and hard-fought, and she deserves the best of me.

When I’m in the classroom my students are my focus, and when I read their work, I give it my full attention. I’ve started using the full screen option in the latest Word version, which blacks out my desktop and browser windows and allows me to look only at my words when I’m working on my book.

But now I want to focus on harnessing that in other areas of my life. I find myself doing work while getting my haircut, or glued to my laptop till midnight while my husband sits on the other couch watching “our” shows, answering my phone while sending e-mail, and other things less minor and more ridiculous. All of this is to say, it’s the next natural step in an effort towards the prioritization I wrote about in 2011—if I am going to do something, then I need to focus in on that one thing (or person, or interaction), and be fully present.

(And that means being more present in this blog space, too.)

On Why I Write

Sharon at Bed, Body & Beyond is hosting the next Patients For a Moment blog carnival and asks us to consider why we write.

I’ve posted about writing often here, and how the questions of
public lives versus private lives and storytelling get more complicated the longer we write.

But since it is such a fundamental part of my life, as well as a fundamental part of my experience as a patient, it’s a question worth exploring further.

First, there’s the obvious. I write because as an author, editor, and an academic who teaches writing, it is my job.

I started writing this blog because I knew there must be other people like me out there, young adults living with chronic illness, and I wanted to find them. I’d always been the sick kid, the sick teenager, the sick twenty-something, and while I knew I might never meet someone with my rare set of diseases in real life, I knew wasn’t alone. And I knew that whether we’d been sick our whole lives or were recently diagnosed, whether our illnesses were life-threatening or life-altering, our individual symptom differences paled in comparison to the universals we struggled with: acceptance, denial, balance, guilt, etc.

I keep writing this blog because as my own journey has evolved from being a single graduate student to becoming a married person, an author, and a mother, I continue to learn and be inspired by those I find on similar paths, facing similar challenges. Careers, infertility, chronic illness, parenthood, patient-hood—the perspectives I encounter on all of this from readers and from other blogs are often invaluable.

I wrote Life Disrupted for similar reasons: I wanted to capture the experience of living with chronic illness as young adults. I am writing my second book because I started asking lots of questions about the evolution of chronic illness in American society that I didn’t know the answers to, and I realized I had to keep digging. (Still digging, but getting close to the end!)

But more simply, I write because it is what I have always done, for as long as I have memories. I write to process, I write to clarify, I write to learn.

As a sick child, I wrote because it was something I could do no matter how bad I felt or how many nights I was in the hospital. I wrote because I loved to read, and books kept me both distracted from illness and connected to something beyond myself. I wrote because I couldn’t always run or play, and I wrote because the voice I discovered in writing gave me an identity beyond that of the sick one. It gave me self-esteem and confidence when my body betrayed me over and over. I don’t know that I’d have gone to Georgetown, or interned at Washingtonpost.com, or done a lot of the things being a teenage and college-aged writer allowed me to do had writing not already been such an integral part of my self-concept.

I have no doubt I’d still be a writer even I hadn’t spent my whole life as a patient. It’s the way I make sense of my world, it is my instinct at every turn. But I wouldn’t have needed writing the way I did so often through the years, and I don’t know that I would appreciate its ability to build community and connect people the way I do. Writing is an extricable part of my personal life, but I’m fortunate that having a career based on writing isn’t just good for my spirit. Writing allows me to have a successful professional life despite my health issues, and though I didn’t consciously set out on this path for those reasons all those years ago, I am grateful to be here.

On Inspiration

Aviva at Sick Momma is hosting the next edition of Patients For a Moment. In her prompt, she asks,

“So what do you do to get yourself out of the doldrums when you fall into a funk? What (or who) inspires you and gives you hope? Where have you found inspiration when you weren't even looking for it? How do you keep on keeping on when your pain is high and your fatigue is even higher?”

When I try to think of the big picture concepts here, I get a little bogged down. There are so many things I could say, and I end up staring at a blank screen, precious moments of time slipping away. More just write, already and less perseverating, shall we?

Honestly, I’m just not in the right zone to write specifically about illness right now. I’m in a tunnel of baby-deadlines-more deadlines-caffeine and focused on getting through the day, and getting enough done that I can get to sleep. Like it or not, good for me or not, there isn’t a lot of mental space left to think about or process anything related to illness, even when its immediacy and urgency wakes me up at 3am.

So, I thought about the stories and thoughts that have inspired me this week, the things that make me stop and pause as a writer, a professor, a mother, a citizen, and, yes, a patient, too. I’m not in the doldrums of illness, but I am definitely in a place where a few good reminders about perspective, trust, curiosity, and discovery are nourishing.

--Have you read the eulogy for Steve Jobs written by his sister? It’s a rich, personable portrait of a man whose vision is a force in many our lives, and it’s also a beautiful look at love, creativity, and passion. His last words were, “Oh wow. Oh wow. Oh wow.” Pretty powerful.

--As the owner of two rescue dogs with sad pasts, I am always moved by stories of redemption and hope. I cam across this emotional article about abuse, trauma, trust, and resiliency for both a dog and her owner. While the animal’s abuse haunts me, the way both have been able to re-build their lives and trust unconditionally are truly inspirational to me. Living in the moment and letting go of pain, frustration, anger, and doubt are never easy, but this really brings to light what is possible when we do.

--I have always felt pretty fortunate to teach the classes I do (writing in the health sciences). My students have been and are passionate about their future careers as health care providers, are they are intellectually curious and engaged, and as a professor and a patient, they me feel just that much more hopeful about the future. Patients would be lucky to have some of these students as their doctors, nurses, pharmacists, and PTs. Every semester, reading their research papers and seeing the inspired issues they delve into makes me appreciate this more.

--Watching this little girl of mine grow from a baby into a walking-talking-signing-laughing-teasing-bike-riding toddler is, quite simply, amazing. No matter what else is going on in my day, in my body, in the world in general, watching her develop, experience new things, and approach life with an independent, open spirit is the essence of inspiring. Every day is a new opportunity to learn, to grow, and to build on what was already there, and that’s a lesson that helps everyone, I think.

On Priorities

So I’m now a year into this whole balancing motherhood-working-illness thing. I originally planned to write this post, the first in a two-part series, three weeks ago, and yet here I am. There’s a lesson there for anyone tempted enough to write about balance:

It doesn’t really exist.

Reflecting on the whole baby/book/job/illnesses/family illness/new business scenario—and while my particular brand of hectic may differ from yours, the point is, we’re all managing a lot of moving parts—I think it’s more accurate to say that striving to prioritize is much more useful than striving for balance. Something will always have to give, and the real lesson is learning how to be okay with that.

My daughter, my family unit, come first. Whatever else I have going on immediately fall into place behind her needs and what is best for her and by extension, what is best for our family. That priority is at the heart of the
constant negotiations that come with a non-traditional full-time work situation (part on campus, part from home). The amount of time I spend with her every day and the flexibility I have to do things with her make up for the challenges involved in squeezing a lot of that work in late at night, early in the morning, and on weekends—without hesitation.

It is worth it, it is indescribably worth it; it is just not easy.

But it’s not supposed to be.

It is easy to prioritize when things operate as we assume they will, when we can plan out our schedule and depend on our productivity. Parenting and chronic illness do not subscribe to predictability.

The really rough patches, the weeks where nothing goes according to plan and illness throws everything out of whack, have been the most illuminating. Times when I am sick and Baby Girl is sick and she needs to go the doctor and I need to go to the doctor and students papers are piling up as quickly as the laundry is and the book revisions are haunting me, when I am worried about her and rocking her and cursing my own stupid infections for making me cough just when her little eyes closed and I startle her awake, are when I have the most clarity:

There will always be papers, and they will eventually get graded. The revisions will get done, just like somehow, some way, the draft got done. The extended family obligations and illness obligations will settle out. The laundry and the dishes and the editing and the phone calls will all get done. The most important thing I can do, that I will ever do, is be there in this moment, physically and mentally. I kiss her damp forehead and whisper in her ear that there is nowhere else I’d rather be.

I have dropped a lot of balls this year. I have missed deadlines (and quite epically, too), I have canceled plans and forgotten tasks. I’ve made promises I haven’t always been able to keep, I’ve disappointed people who have wanted more from me than I physically give. I’ve climbed the stairs at 11pm with coffee in hand, ready to pull a long night in front of the computer, and I’ve put hot coffee in the refrigerator and creamer in the microwave. At points I’ve moved so far from any sort of balance that it is laughable.

But I’ve learned to be okay with that, because I think that my current lack of balance means I am prioritizing as I should. Right now, what matters most (baby and husband, family, students, book, my health) depends on me knowing when to pull back from everything else: when to say no, when to put up boundaries, and when to say all I can do is my best and really believe that is good enough.

A long time ago I saw this quote on Penelope Trunk’s blog: One thing at a time. Most important thing first. Start now. I may have even blogged about that line before. Honestly, I repeat it to myself often, and I find that it’s knowing how to judge what are the most important things and letting go of the white noise that is the key.

While a lot has slipped through the cracks, what I’ve gotten in exchange is incomparable.

(And because I want this writing to be more of a priority again, I am holding myself accountable: next up, the second piece in this series about all the pragmatic stuff that helps keep life in motion. A happy baby who sleeps great, an extremely hands-on husband, and a whole group of people who love this child, support this book, and care about my family? That helps!)

On Students, Teachers, and Chronic Illness

My semester started recently. For weeks prior, while I fretted about not finalizing my syllabi and gulped copious amounts of late-night coffee to finish writing my book draft, Erin Breedlove’s post on the five things professors should know about students with disabilities rattled around in my brain. (As did this response to her post from the perspective of a professor who works with students with disabilities.)

Finally, with my new fall routine taking shape, a certain little person’s first birthday under our belts (!), and yes, lots of coffee, I have the mental space to piece together my own thoughts on the topic.

I have a somewhat unique perspective on students, teachers, and chronic illness. As a lifelong patient, my entire career as a student has taken place within the context of chronic and often serious illness. As a full-time faculty member with seven years of college instruction behind me, I’ve seen a lot from the other side of the desk, too. I wrote in detail about navigating college with chronic illness in Life Disrupted but here are some brief thoughts for students:

Communicate with your instructors. It is your choice as to how, when, and if you disclose illness and/or disability to your professors, but what I tell students who do fill me in is that I can only help them as much as I am informed. If I know there is a medical situation, or a hospitalization or other event, I can help formulate a plan that minimizes stress and allows students to focus on the most important thing first: their health. I am happy and willing to oblige, but it is much easier to do that if I am aware of at least the basics, rather than finding out after weeks and weeks of missed classes/work that a medical problem exists.

When I was an undergrad and grad student, I usually had a brief chat at the end of the first class where I succinctly described my situation in the context of how it might impact my attendance—for example, infections worsen quickly so I might end up in the hospital unexpectedly. I usually ended by saying while I hoped there would be no complications that semester if there were, I would communicate them as promptly as possible.

Document as much as you can if you know you will need accommodations. With documentation from disability services, medical/health professionals, etc (whatever the particular institution requires), instructors can do a lot to help students with illness succeed in the classroom. Without them, our hands are somewhat tied.

Be proactive.This has a lot of applications. When planning course loads, consider time of day. Some students struggle with early classes, while others know their fatigue or pain is much worse later in the day and earlier classes make more sense. If your conditions are worse in the winter, see if you can spread out classes over the summer session so the load is a little lighter during known trouble times.

If you can, try to be proactive when you feel a flare coming on, or experience a decline in health status and fall behind in work. Even a simple e-mail can do a lot to decrease the stress that goes along with being overwhelmed when you know you are falling behind. Though a bit of an extreme of an example, when I was in the ICU right before exam period in college, I was able to send some brief e-mails just to let my instructors know I was an inpatient and that I would be in touch to make up all missed work as soon as possible. I never experienced anything other than concern and cooperation from my instructors in situations like this.

Since I’ve had many students with physical and mental health conditions in my classes, I know most instructors do, too. I think the Chronic Illness Initiative at DePaul University (where I’ve had the good fortune to teach a course on chronic illness) is a wonderful because it helps serve as a liaison between students with illness and their instructors, but certainly most of us teach without this type of resource. For those in academia who want to help their students, here are some considerations:

Understand the challenging nature of chronic illness. Many of your students who have disclosed illness will not “look” sick and their conditions may flare and worsen unpredictably. The student who was raising her hand in Monday’s class could be incapacitated by Wednesday. We’re more familiar with visible physical disabilities and there are more clear-cut guidelines and accommodations for physical disabilities—chronic illness is a comparatively grayer space.

Be as flexible as you can while still maintaining the classroom’s integrity. If you know there is a verified medical situation, work with your students to prioritize deadlines and assignments so they can catch up without putting their health in jeopardy to do so. Of course you need to be fair to the rest of the class and need to ensure the student in question completes the work required to pass the course, but helping students focus on the most important assignments and being flexible with deadlines can do a lot to keep students from slipping too far.

Hold your students with illness accountable. This is a tough one, but so important. If you’ve worked out a viable plan to catch up on work that all parties have agreed to, then barring further complications or health crises, the student should come through with the work. I can say this without compunction because I’ve been on the other side, and I’ve made those agreements and taken those extensions and kept my word. Students with illness warrant accommodation and flexibility, but being accountable is a critical life skill for them, too.

And of course, above all, respect for both sides goes a long, long way.

On Writing

It occurs to me that I haven’t written about writing in awhile.

Partly, this is because the whole writing-about-writing thing can be a bit too meta unless you’re sitting in a graduate writing workshop surrounded by people who do nothing but write, too.

But mostly, it’s because for awhile now I have been too busy with the writing I do for a living to do much else (except mothering, which comes first, of course). Case in point: it is almost 10 pm on a Friday night and I’m taking a quick break from The Book but expect another hour or two of work before it’s a night. It’s glamorous, the writing life, no?

(And with Le Plague circa May 2011 forging a vengeful comeback, it’s even more glamorous. But I digress…)

It’s been awhile since I’ve been wrapped up this intensely in one project, since I’ve had this much focus. It’s much harder fought than the last time around, or when I was in graduate school, when I wasn’t a full-time lecturer or mother to an infant, so each moment I do carve out for writing is that much more precious.

It’s been good for me to step beyond the role of writing instructor and really dig into the writing process myself in such an all-encompassing way. I’ve re-learned some important things:

1. Know when to walk away: Last summer, when I tried to get as much done as I could before my health imploded and my baby arrived, I was stuck in the “I must write X amount of words per day” rut. This might be good for discipline, but it’s terrible for creativity and for development of ideas. Sometimes, I am really “on” and I can write several thousand words in one chunk of time. Other days, it’s hard going to get more than a few paragraphs. When that happens, when I am forcing each sentence and not saying what I want to say, the best thing to do is step away—sometimes for an early lunch, sometimes for a short walk, sometimes for a few hours. See, ideas need to marinate a little bit, and I need time to figure out what I want to say about what I’ve just written. Usually, it’s when I am walking with the baby or driving the car or making dinner that I solve the problem or make the connection I couldn’t do earlier.

2. Remember the audience: For real, I teach a whole class on writing for different audiences (in the health sciences) and talk about audience so much during the semester I tire of hearing the word. But with a project as big as the one I am working on now, I need to drill that into my brain as much as my students need to hear it. Nowhere is audience more important than in terms of scope—I am doing a ton of research and I always need to stop and ask myself how much context and background I can reasonably expect my audience to have; in class, we call this audience analysis. This dictates how much detail and backstory I fill in, and it is a constant negotiation, probably one of the most difficult parts of writing for me. I have so much information, now how can I organize it? Figuring out what my readers need to know is a huge step.

3. Tell a good story: From novels and short stories to memoirs and serious nonfiction projects, each genre of writing needs to meet this very basic but oh-so-important criterion. The writer needs to engage the readers, to entertain them and make them want to keep reading. This does not change if the subject matter is serious and the research is intense—every writer still needs to make it a good story. I know when I am getting glassy-eyed with what I am writing that it is time to switch gears (or walk away). You can be informative and still be interesting. It is not always an easy thing to balance, but if you’re genuinely interested in the subject matter, that will come through. I always tell my students to think carefully before committing to a research topic—if after a few weeks, they are bored with it and bored with writing it, I will be able to tell that from reading it.

This is an incomplete list, for sure, but it’s a start. Writers and bloggers out there, what can you add?

On Working From Home

So in my recent post on working with chronic illness, I mentioned a forthcoming piece on working from home.

Now, before I launch into my experiences with and take on working from home, I should point out some illness-specific benefits: There is more flexibility to schedule doctor appointments, tests, and daily chest physiotherapy. On “bad” days I can still work, even if means moving my home office to the couch and typing over the nebulizer mask. On days when other conditions flare and I can’t move my legs well (for example) I don’t have to worry about how I will get from point A to point B. Less commuting on public transportation and less time in crowded places during the peak cold/flu season means less opportunity for me to catch things that leave much sicker for longer than the average person.

And of course, when I am in the hospital, my laptop and wireless access mean I can keep on working.

I must admit that there are a lot of positives in working from home when trying to manage a career and chronic illness. It doesn’t mean working less—in fact, one of the biggest challenges is that there is little separation from work life and regular life—it just means it is a little easier to work better when my body gets in my way.

I’ve worked from home in some way or another for nine years now, whether it’s a couple days a week during the semester or full-time doing freelance work and writing books. This Boston Globe piece on working from home did point out some relevant challenges and opportunities of working home. I particularly enjoyed the response to the claim that it is easy to take care of children and get work done—sure, bring your child to your office sometime and see how much work you get done!

Anyway, I think the key to working from home successfully is knowing your strengths and weaknesses and finding a routine that works for you. It’s not for everyone. It can be lonely and isolating. It can be really hard to focus and self-motivate. It can completely usurp your home/family balance. Some people get strength from social interaction and do best when they draw from the energy of a group. Some people need regular check-ins and accountability for best results. The point is, know the conditions that allow you to succeed.

For me, it doesn’t matter how sick I feel or how late I was up working or with the baby; I sit down at my desk in my home office every morning, coffee in hand, and go through my inbox/headlines/social media check-in. I break for a brief lunch. I don’t make or take personal calls during my designated work hours: those hours are scarce and precious to me, and I try to make the most of them. Sometimes I need a change of scenery and go to a coffee shop; other times I know I just need to plow through it without any distractions or stepping away from my computer. I make to-do lists every night before I go to bed.

Oh, and before my daughter was even born I knew I wasn’t going to try a full-time course load with a full-time writing career, a large part of which happens from my home office, without some child care. As I mentioned before, even if it means working many hours late at night and very early, my time with her is about her, and when I am working, I just want to focus so I can get it done more efficiently and therefore, have more quality time with my family.

Boundaries are also fundamental. I think many of us, whether we work from home or not, struggle with knowing when to “shut off” work, and this is especially true when our office is in our home and our deadlines are often self-imposed. It’s no secret that balance is hard for me, and I do think working from home exacerbates that.

But creating our own boundaries is just one part of it. The other part is reinforcing those boundaries with the people in our lives. The expectation we can chat whenever, we can make plans any time of day, etc simply because we are working from home can get frustrating, and if I don’t hold up those boundaries (nicely) I can’t expect others to respect them, either.

Sometimes I feel there is an inherent value judgment that other people’s time is more valuable than mine if they happen to work in a traditional office setting and I am at home, that my time is more expendable.

And in a way, it is—that’s both the challenge of it. If I need to or want to, I can step away more easily. I can take my daughter to music class, or go to another doctor’s appointment, etc and make up the time later in the day or the week (or weekend). I don’t work from home a large part of the time for this—it just so happens that writing, editing, being a professor, and consulting lend themselves to a non-traditional work situation—but it is a major positive that is more important than ever now that I have a child. Yet if I am not vigilant and disciplined, flexibility could become a detriment.

Lastly, working from home leaves me in a weird place when it comes to play dates, making friends with other mothers, etc. I am not away at an office every day of the week (during the semester, 2-3), but I am not at SAHM, either. I don’t make plans for evenings often, even on weekends, because I am usually trying to keep my head above water, work-wise.

These are not complaints, merely observations. I’ve made decisions to bring me to this point, ones I hope set me up for the most success in terms of my health, my careers, and my ability to be the mother I want to be. Like everything, there are compromises but for me and in my personal set of circumstances, the compromises are worth it.

Anyone with tips or observations to share? If you’ve made the switch to working from home, are you glad you did? Did you do it for your health?

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.

In the Headlines, In Real Life

My writing may be a little more erratic than normal right now, but I still try to stay on top of the headlines. It’s the journalist in me; a day doesn’t feel right if it doesn’t start with skimming the newspapers, no matter how early. Every now and then, I come across stories that directly resonate with what’s going on in my own life.

As a New Englander, I am acutely aware of rapid and drastic seasonal changes and their effects on my lungs. I suffocate in humidity, cold winter months mean lots of infections, and the gray area between summer and fall and winter and spring are predictable only in their unpredictability.

I steadfastly maintain two truths about the weather and my health: my lungs are as accurate a barometer of weather changes as an arthritic’s joints, and the reason I did relatively well when I lived in Dublin was because although the weather was consistently dismal, it was consistent. No huge swings, no choking heat, no bone-chilling lows.

Anyone else sensitive to weather fluctuations?

Now, as I wrote awhile ago when I started this blog, I do not have asthma. However, when I read this NYT article on asthma and weather changes yesterday, I nodded along in agreement. The study found it is not just environmental or allergic factors that contribute to asthma symptoms:

“The study authors noted that many patients are well aware that weather fluctuations influence their asthma symptoms, but this is the first study to document the effect. In addition, it wasn’t just cold weather that triggered asthma problems but temperature increases as well.”

It’s what I’ve always known about my some of my own lung symptoms—wheezing, congestion, etc—even if they are caused by bronchiectasis exacerbations and PCD. Right now, I’m sitting here in summer-like conditions with newscasters warning of a big chill tomorrow—but I already knew that was coming. I could feel it in my chest.

***
Switching gear a little bit, I was so happy to see this wonderful newspaper article about the Chronic Illness Initiative at DePaul University. I have strong feelings about chronic illness and education. From students being proactive, anticipating their needs and problems, and communicating regularly to faculty and administration being flexible and accommodating, there are many steps we can take to ensure that students with chronic illness achieve their educational goals.

Luckily, the Chronic Illness Initiative (CII) is an institutional resource that helps both students and faculty navigate these complicated issues, and enables students to complete their degrees at an appropriate pace for their medical needs.

I’ve written about the CII before, but this recent article was particularly compelling to me because I spoke at a Symposium there last spring and was fortunate enough to meet several of these students, including some interviewed in the article. I was impressed with their commitment to education, but also with their enthusiasm for the CII itself.

Even more, this fall I’m actually teaching an online class through the School for New Learning at DePaul, the same school that operates the CII. It’s a class that explores how people with chronic illness exist in an otherwise healthy world (the personal and institutional challenges), and there is definitely crossover between the goals of the CII and course content.

It’s a great article, and personally, it is neat to see when headlines and real life intersect.

On Invisible Illness

This week is Invisible Awareness Week, and my post about it is a day later than I wanted it to be, which is right on par with the way things are going right now.

In fact, I wasn’t planning on just posting about it; I was scheduled to present a virtual seminar this week and due to intense schedule conflicts, and with great regret, I had to cancel. (I’m already percolating ideas for next year, so we will see…)

I’d originally planned this post to be a continuation of the conversation about illness versus disability I’ve had here on A Chronic Dose. To wit, I recently sat through an HR orientation and was pleasantly surprised by the time and attention the speaker gave to “invisible” conditions.

But that post didn’t work out as planned, either, though I do promise to return to it.

Instead, though it’s a day later than what I wanted and not neatly focused like I’d planned, all I can do is write about where I am right now.

Overwhelmed. Exhausted. Exhilarated. Optimistic. Anxious. Trying to plan for the unpredictable, willing my body to cooperate for me and not let me down, and trying to squash the voice that’s whispering Haven’t you learned anything yet?

I’m adjusting to some new work changes and client load and embracing the opportunities with gratitude. It is a precarious balance, though, and while I loathe cliché, it does seem like all it will take is one slip and everything could tumble down like a house of cards.

I mean, all I have to do is stay as healthy as possible, right? (Insert cynical tone here.)

But I cannot indulge the what-if’s and the doubts. It does me no good, and it flies in the face of my reason thoughts on hope.

And really, in the middle of a lot of changes and decisions and pressure, what this tension is about is identity. It’s an ongoing evolution; just when I think I’ve established a groove, I need to re-calibrate.

I’m a writer. I’m also a consultant, an editor, a professor, and a patient. Sometimes those roles overlap, like when I was asked to teach a course using my first book as a core text. (Talk about the personal and the professional colliding. I might have more to say about that later.) Often, the roles aren’t as blatantly converged, like when I sign on new freelance editorial clients, or when I stand in front of other classrooms and hand out syllabi and the only way anyone might know about my patient experiences would be if they Googled me. (Hello, potential Googlers!)

Clearly it’s no secret, but this part of life is something I leave outside the classroom and client conversations. This division is frenetic, but necessary.

I thought about how I wanted to be identified by others (which of course is much more about how I want to see myself), and the whole notion of public versus private while I waited for my new physical therapist to arrive last night.

My normal therapist is away, and I haven’t had anyone besides him for six years. (Yes, I am spoiled.) Having a health care provider visit your house is such a different experience than going to a hospital for treatment. A complete stranger comes into your living room, performs a rather physical treatment on sensitive body parts, and is witness to all minutiae and vulnerabilities of private life: the mail on the front table, the barking dogs, what you’re making for dinner, and often, what you look like in pre-dawn hours when your glasses are still on and your pajamas don’t match and you reach for the spit cup.

“So how was your day?” she asked when we were settled into position, as if we were picking up from an earlier conversation. Because you know, that's what you do when someone you've known for about 90 seconds is thumping your chest and it's dinner time and your dogs are slamming their bones on the hardwood floor, begging for attention.

“Long but productive,” I said. And from there we talked about where she lived and how I worked near there. We talked about writing and teaching and graduate school, and we talked about rescue dogs and traffic and commuting.

And even though she was there because I have PCD and bronchiectasis and I was literally choking in phlegm before she arrived, it didn’t really come up.

It wasn’t that my illnesses were invisible (um, hello hacking cough and vigorous clapping) but they were not defining.

The point of Invisible Illness Week is to spread awareness to others. This week, I think I was the one who needed to appreciate that sometimes the push and pull, the tension between being a patient and being a person, the re-calibrating of roles—it all settles out.

One day at a time.

So Long, Summer

It’s been an usually long time since I’ve written—somehow, life and all its unpredictability conspired against me in terms of writing time.

And in the past several days, while I was adjusting to major work changes and family health stuff, entertaining visiting friends and making doctor appointments (because the good always accompanies the not-so-good, which keeps us sane and moving forward, I think) summer somehow slipped away. The cold, rainy weather of this past June and July and the two-week sweltering heat of late August did not constitute a real summer to my New England psyche, so today’s brisk temperatures and distinct autumnal crispness feel a bit hollow—you can’t say goodbye to those stereotypically lazy, hazy days of summer that really never happened.

As you know, I’ve been dreading the return of fall and winter in a way I never have before. Normally the choking humidity of summer in Boston and the luster of the promise of a fresh new start is a powerful combination that leaves me pining for September by, oh, July 4th. Seriously. I used to be the kid who had all her school supplies bought (hello, Trapper-Keepers and erasable pens) and organized by mid-July.

This year, not so much, but for good reason. I didn’t have any serious infections or freak medical calamities, which was a refreshing change. I got to sit next to President Clinton and talk about health care reform, and celebrated my fourth wedding anniversary. I woke up and on most days, I was able to complete the tasks I wanted. The daily maintenance and ministrations of chronic illness were white noise, routine parts of my life that did not define my life.

I want this trend to continue, despite the shorter days, the copious amounts of germs that accompany winter, the threat of H1N1(I’m not paranoid, just acutely conscious of my risks, just like I am with regular seasonal influenza), etc.

As I think back to my last post on hope (forgive the stream of consciousness style of this post), I’m reminded that we never can tell how things will unfold, personally or professionally. All we can do is move forward, do our best to minimize the variables we can control for, and adjust when necessary.

I have a medical plan in place to try and prevent another winter like last year, and more than that, I have a lot of things to look forward to this fall: new career challenges in academia, moving forward with my book, etc. As much as I’ve been willing time to stop lately, it hit me when I dropped some of my fall clothes off at the dry cleaners last night: that queasy feeling of anticipation.

September’s here, and I have every reason to believe (or to hope) it will be the start of good things.

***
Speaking of new changes and things to look forward to, I’m pleased to announce that my friend and colleague Jenni Prokopy from ChronicBabeand I are starting a radio show this fall. The Chronic Truth will debut in a few weeks on BlogTalk Radio. It will feature a variety of topics (diagnoses and doctors, relationships, health reform, etc), and will include guest experts, listener questions, etc.

We’re both really excited to collaborate on this (we had a blast doing our podcast) and will get the rest of details out to you as soon as we can.

Hope (or something like it)

“Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chilliest land
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.”
--Emily Dickinson

Fourteen years after I learned this poem for my freshman English class, I still remember every line. No, this is not because I am a fervent Emily Dickinson fan but because the paper I wrote about this poem turned out to be the first of several papers my teacher proceeded to read to her sophomore class, according to the sophomores cornered me at lunch to tell me. They were not at all impressed.

To get an idea of how awesome it felt to be the English nerd, here’s some more context for how cool I felt: the fall of my freshman year in high school, I was in a new school where a.) everyone knew each other already and b.) no one had ever heard of my hometown and didn’t seem all that interested in finding out more about it--or me. While everyone bonded on fall sports teams, I hobbled around on crutches, my reconstructed ankle still months away from healing. I prayed my ears wouldn’t visibly spew infected crap during school hours, and tried to hide how wheezy I got traipsing through the sweltering hallways one crutch step at a time.

Oh, and obviously I had glasses and braces, but come on, you knew that was coming.

As an adult, I can somewhat appreciate my teacher’s misguided enthusiasm for my ability to write a cohesive essay, but I wish she’d, you know, just written me a margin note or something instead of using my work to coerce her other classes into writing. She did my one-girl crusade for normalcy (invisibility?) no favors.

But enough digression. I’ve been thinking a lot about the word (or really the concept of) hope lately.

Some more context: I am a person of extremes. Now, I’ve evolved a little from my crazy full-course-load-and editing the school newspaper-and interning-and volunteering or spending-weeks-in-the-hospital dual existence in college. I’ve gotten sicker, I’ve matured, I’ve changed my treatment regimen, I’ve re-prioritized things and I’ve learned that occasionally, limits and common sense are good things. There is a middle ground between 18-hour days and the ICU.

But in many ways, I am still all-or-nothing. It is a strength and a weakness. Those who know me in real life know this. I know I certainly experience my emotions like this. When I get good news or learn about possibilities, I get so excited. The tenor in my voice changes, I have more energy, I am consumed. When there is reason to be joyful, I am not someone who can hide it, not in my words, my diction, my gestures, my expressions.

And this is a good thing—I don’t want to become someone who cannot or does not experience things so fully. But it is not without complications: my expectations for things are high, and my disappointment is correspondingly low. I can be hot-headed, and easily frustrated when things don't work out. I can push things past the limit, and I can get too focused on doing to remember that goals are great but this does not mean they are not subject to revision. And sometimes should be subject to revision.

As I sit here preparing for another fall semester, I can’t help but think of that poem for more than its cringe-worthy memories. Though it has only been hot and summery for a few days in Boston, the shadow of autumn still manages to cut through the hazy humidity of summer. Leaves are scattered across the lawn already, and syllabi and new schedules must be set.

And for as much I love the fresh slate that is September, I am not ready. I’ve only just gained some semblance of stable health and in such a visceral way, I dread giving pieces of it back to every infection I know will come. My jaw clenches thinking about it. I do not want evenings to start at 4pm, I do not want to cough up blood, or lose holidays and weekends.

I would love September, if only October-April did not follow it.

I’ve put in long (long) hours on the book I am writing, and have realized the process is much slower than I had anticipated this time around. Reluctantly, I take research detours and “let things marinate” because it is what the book demands, but it goes against my nature to do this, especially with my daily word count stipulations hanging over me.

I’m expanding my editorial business and love connecting with clients and taking on new projects, and my excitement for it consumes me.

I am not patient. If I were, I would not exist so often in extremes. I have high expectations for my writing projects, for my career, for my health to remain stable, and for our future family (and that is certainly not an easy or quick process, either.)

I do not want to stand still when it is my nature to equate motion with progress. I do not want setbacks or delays; nor do I want winter, or to miss daily word counts, or to have taken such a circuitous route thus far towards being a parent.

And yet I yield.

All I can do is have hope: hope that things come to fruition as they are meant to; hope that I will have the wisdom to know when to pull back or push forward; hope that decisions we make now are right later, and hope that I don't ever move too far from extremes. I don't ever want to forget that fluttery, excited, jittery, all-consuming feeling. It took me fourteen years to name it as hope.

Practicing Professionalism

It’s been a good week. The election is finally over, the results were met with grace and dignity by the losers and optimism by the winners, and hopefully we can all move forward.

(Plus, it’s Friday, and it’s officially been November for a full work week. Normally this would be a non-issue, but I realized last night I haven’t been acutely ill yet this month. I honestly can’t remember a 7-day stretch in November where I have been able to say that. I’m going to ignore the tiny little voice that says “don’t jinx this!” and hope instead this points to a better “plague season” for me.)

But the other reason this has been such a good week is this weird confluence of personal and professional interests that has taken place over the past few days. In my classes we’ve been reading a review article published a couple of years ago in the New England Journal of Medicine about developing professionalism in physicians. Initially, I chose the article because it is a good model for the type of evaluative research writing they are doing right now and while it is certainly useful for that, the content of the article itself has been even more beneficial.

We spent a good portion of class discussing the three concepts deemed necessary for developing professionalism: setting expectations, providing experiences, and evaluating outcomes. I was surprised by how readily they responded to these ideas, commenting on preceptors and colleagues in clinical settings who have been role models for them and instances where they really learned from someone else. And of course, they commented on the moments when the opposite happened, when they received little instruction or explanation from the people charged with assessing and training them.

They are thoughtful and passionate about what they do. They recognize that the best way to learn is by doing, and that sometimes the “doing” doesn’t go smoothly and certain doesn’t come easily. But they also realize that “doing” must be accompanied by knowledge, observation, and input from people with more experience…and that people who have authority also have accountability. Discussions like this remind of the privilege it is to see medicine from the other side. My personal experience as a patient is not something that comes into the classroom, but of course it is something that shapes my perspective.

With a week’s worth of discussions swirling around in my brain I sat down this morning to catch up on the latest doctor-patient column in the NYT’s Well blog. This week’s post, A Positive Approach to Doctors in Training, discusses the rigors of the intern experience and the “culture of fear and negative feedback” that permeates medical education. Could I ask for a more relevant topic to read?

Dr. Chen explores the negative reinforcement so common in the training doctors, and the tendency towards focusing on surviving, rather than improving, as a result. (And of course, the backdrop of last night’s Grey’s Anatomy, where the competition over surgical skills and opportunities took a somewhat macabre twist, added to my interest in this article).

But as noted in the article, research suggests positive reinforcement, long a staple in other professions, may have an important role in developing professionalism in doctors. (Obvious, right? But practice and theory can be far apart…). Of course we need to hear what we’re doing incorrectly so we can avoid making a (potentially serious) mistake again, but as published research, common sense, and several classrooms’ worth of future health care professionals seem to agree, knowing what we’re doing right is incredibly important, too.

All of this got me thinking about the practice of teaching in general. Setting expectations (syllabus, grading criteria, classroom policies, etc) and providing experiences (drafting, workshops, model writing, in-class prompts, etc) are easier to handle than evaluating outcomes (at least for me). I relate to my students’ concerns and experiences and I realize my responsibility in this. It can be an awfully difficult line to draw between giving comments that will help a writer improve (constructive criticism) and giving comments that ultimately deter or de-motivate a writer. I’m always conscious of highlighting moments in the text that work well, but at the same time I don’t want to gloss over moments that aren’t working but have potential.

And I am conscious of their consciousness—just as much as they don’t want pages full of red marks, they don’t want to only hear what they’re doing well, either.

One thing that has really emerged from the week of confluence is the reminder that in any kind of teaching environment, accountability works both ways. I want respect and hard work from my students, but they deserve all that from me too, whether it’s the way I choose to comment on a weak paper or the way I respond to their questions in class. This makes sense in the classroom and of course it makes sense in the hospital, too.