Category Archives: teaching

These Three Things

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

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

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

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

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

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

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

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

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

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

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

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

In the Headlines, In Real Life

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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

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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

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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)

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“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

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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.