More Narrative Medicine and Organized Chaos

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

Behold:



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

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

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

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

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

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

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

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

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

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

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Just Make It Work

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

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

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

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

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

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

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

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

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

“There is nothing as clarifying as a deadline.”

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

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

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

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

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

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

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

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

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

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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.

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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.

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Beyond Memes: Public versus Private

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There’s an interesting meme going around Facebook and blogs right now: 30 Things About My Invisible Illness You May Not Know. With Invisible Illness Week quickly approaching, the questions posed are particularly resonant.

I’ve thought a lot about how I’d answer the questions. For some, I had immediate replies, like “Something I never thought I could do with my illness that I did was __” (live abroad for a year) and “The hardest part about mornings are __” (trying to be awake and, you know, pleasant for early morning chest PT). But several of them touched on things that my experiences don’t speak to in the same way; namely, the “before” and “after” of illness onset, or, most notably, “If I could have one day of feeling normal again I would__.”

Like many lifelong patients, this is my normal. I cannot long for what I cannot imagine. But the question of which is better, to have known healthy before getting sick or to have never known healthy—a question that comes up fairly often—actually hints at something deeper than these static boundaries. This is my normal, this is the life I created from the circumstances in which I found myself and I would not trade what I have created for a taste of a different meaning of normal.

Though I’m not going to complete the whole meme here, I think it can be incredibly useful, and not just for people adjusting to sudden or adult-onset chronic illness. As I read people’s replies about what nice/surprising things others have done for them, it hit me how much of that is my normal, too. I’ve always been sick, I’ve always been surrounded by friends and family, so I have, quite literally, grown up having people respond to me with compassion, loyalty, and empathy.

In fact, the hospital visits, cards, phone calls, Fed-Ex’ed mix CDs, etc and the intrinsic knowing that there are people who will come in the middle of the night if they are ever asked form such an enormous debt of gratitude I feel no amount of similar deeds I do for others can ever repay it.

(Of course there have been moments of the opposite, and friendships that didn’t survive this, but like the careless comments, insensitive assumptions, or completely inane expectations I’ve received, they are exceptions, not the norm. Er, normal. Not trying to pun here.)

I’m not saying I haven’t had adjustments to make, or new realities to forge. I didn’t get correctly diagnosed with some of my more serious problems until I was an adult, and my treatments changed significantly. And like most patients with chronic illness, my health status fluctuates frequently and drastically, so life is a constant cycle of readjustment.

After mulling this over for a few days, though, I think the more striking “before” and “after” I can point to is that between illness being public or private. For twenty-three years I was sick and while it seeped into everything I did and every decision I made, it wasn’t something I talked about outside of family, friends, teachers, and of course, doctors. I’ve had some sort of a byline since I was 14, but the only piece of “public” writing that concerned illness was my college essay, and that was mainly because I felt I should probably explain why I missed the better part of two years of high school. You know, minor details.

And then, as the story goes, I found myself in a nonfiction course in my MFA program with a looming deadline and I didn’t know what else to write about, so I wrote about life in the hospital and suddenly, eleven other people knew more about my thoughts and emotions during medical crises than most people in my life did.

Weird.

A few years, a few hundred blog posts, one book and another in the works, and many, many exchanges with other writers, bloggers, and patients later, here I am. And as much as I work to update and refine my reality based on the color of my lung secretions, how much air I can breathe in, or what other random infection or problem that springs up, I find the balance between private and public just as important and just as complicated.

I strive for the universals of modern chronic illness but know those depend on particulars. After all, all writing must tell a good story, and that story comes in the details. I embrace the conversations and explorations a more public illness experience allows for, and I appreciate the irony that people who read what I write are sometimes more in tune with what’s going on than people I know—it’s a macro version of that first workshop experience I had as an MFA student.

But for all the stuff that happens offline, the daily minutiae and the more serious decisions and reactions that are part of my normal that do not make their way into my posts, I am equally grateful for the private experience of illness.

And so to return to the meme, let’s look at #26: “When someone is diagnosed I’d like to tell them__.” Based on this post, I’d tell them of the value of online communities and social media, of how interesting and affirming it can be to read other people’s experiences and see traces of your own story in them. I’d tell them to connect, to leave comments on blogs, to know no one has all the answers but you should always be open to learning from others’ perspectives.

And I’d tell them that the best-case scenario is to also have someone you can call when you are crying and need someone to hear the tears, or when you have good news that the people who have traveled this long road with you offline can appreciate the most.

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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.

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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.

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Comparing Facts in Health Reform

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From the television ads and late night comedy sketches to the daily headlines about “death panels”and colorful town hall meetings, it’s obvious the dialogue surrounding health care reform is as contentious as ever.

But what about the substance of the actual proposals, which seems somewhat lost in all of the rhetoric? Chronic illness is a huge factor in reform, which is why I listened in with interest to a press call announcing Partnership to Fight Chronic Disease’s release of “Hitting the ‘Bulls-eye’ in Health Reform: Controlling Chronic Disease to Reduce Cost and Improve Quality.” The document is a side-by-side comparison of the bills and offers five recommendations for how Congress could control costs through chronic disease prevention.

You can access the publication by clicking here.

As the PFCD’s Dr. Kenneth Thorpe pointed out during the press call, looking at the big picture there are two major sets of issues involved in the health care debate: slowing down health care spending and improving quality, and providing insurance coverage to the millions of uninsured Americans. While the latter is hugely important, with the release of this document the PFCD is focusing on the first set of issues, which affect the chronic disease population in significant ways.

Thorpe characterized the current proposals a “good start” but said the idea would be that Congress would come back in the fall and build on this foundation and offer more aggressive solutions. As such, the report identifies five areas to target, many of which are familiar to us by now: prevention, better coordination of care, reduction of administrative costs, etc.

One thing I was really pleased to hear relates to disease prevention. Of course, we all know the best way to reduce disease expenditures is to prevent conditions from developing in the first place, and there are many specific ideas relating to that. As I’ve written before, when it comes to health care and existing chronic illness, prevention is often more a question of preventing progression than anything else. As such, I paid particular attention when Dr. Thorpe said we need to make sure we’re allowing patients to manage their own conditions and we need to remove barriers that stop them from doing that. His examples included getting hypertension re-checked or following up with blood sugar testing with doctors to prevent long-terms complications like amputations, but my mind went immediately to the types of long-term therapies (like chest PT) that keep patients like me out of the hospital.

The side-by-side comparison of proposals is really quite helpful, so make sure you click on over and go through the information yourself.

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Synergy (in an unexpected way)

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It’s been somewhat of a synergistic week.

Someone I love is in the middle of some serious health issues. I’m not going into detail because it’s really not my story to tell but more than that, the physical details don’t matter. What does matter is that this person faces a very long and difficult road, and is frustrated and in a lot of pain.

And I am on the outside. I am able to listen and make phone calls or do errands, but completely unable to do what any of us who care really want to do: make it better.

While I can understand the frustration and isolation of illness better than others might, even this familiarity is not enough to bridge the gap. Being able to understand the emotional aspects of this situation does not make me feel any less useless, or helpless.

And with that, I stopped and realized what it must sometimes feel like for the people who love us—so much of all of this is out of their control, too. We often write and think about control in terms of our own bodies—what medications we take, what preventive steps we adopt, what can go wrong not matter how carefully we plan otherwise.

But those who love us have their own frustrations (and I know this is but one of many). They can do so many amazing things for us day in and day out and most of the time, that’s enough. Most of the time, we’re all probably too busy living to stop and think about it much. But every now and then, it must really stink to stand by and watch someone you love go through a bad spell and not be able to do the one thing you want to, which is to fix it.

A couple of years ago I wrote this piece on marriage and chronic illness. I re-read it today, with an even deeper respect for what it takes to make a relationship so much more than the sum of its challenges, and an even deeper appreciation for my husband, who for four yeas (as of today) has shown me what it means to put someone else’s interests above your own without hesitation.

I know I am one of the lucky ones.

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Illness vs Disability

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So, this post was percolating well before I was on vacation, but I’m glad I held off on committing it to the screen until now. My vacation was actually a pretty good complement to a line of thought that first began when I met up with Joe Wright of the wonderful blog, Hemodynamics—his posts are always so intelligent and insightful, and I knew speaking with him in person would not disappoint.

As with all good conversations, ours moved from an original specific topic and wandered towards something bigger and completely unscripted: chronic illness and disability, and the disability movement.

Now, if you’ve read this post on illness versus disease or the follow-up on language and the patient experience, you know how interested I am in the semantics of illness. Accordingly, I find the intersection of illness and disability pretty interesting, too.

For a start, people with chronic illness may be considered disabled, but people with disabilities do not always have chronic illness.

And if you’re wondering what vacation has to do with this, I’m getting there. While this summer’s vacation was more of a “working vacation” than years past, it was also one of the best ones. Unlike previous August trips, I didn’t have heart monitors or blood pressure cuffs with me. I had adrenaline, and therefore didn’t have to deal with the side effects of solumedrol infusions, and since I didn’t have an active respiratory infection I wasn’t chained to my nebulizer.

Instead, I took walks and brought my dogs swimming and had dinner on the beach and generally had a blast (work aside). My legs worked, my wheezes were dull, and my energy was good.

And in comparing the relative normalcy of our vacation to the chaos I am used to, I couldn’t help thinking about the ebb and flow of chronic illness, how sometimes the body can be cooperative and yielding while others times the symptoms take over so many aspects of daily life.

So for people whose chronic illnesses cause disabling symptoms, how does that boundary crossing work? Going back to the decisions we make when choosing terms to describe illness, when are you more likely to use the term “disability” versus “chronic illness?” Is it a semantic distinction of little significance to you, or is the former more difficult to adjust to or use? (And if so, why?)

I wonder if the choice to use “disability” is more tied up with receiving needed accommodations or services—a more public term—while chronic illness is a more private understanding of the ebb and flow of invisible illness outsiders might not get.

The other connection I’m just starting to tease out (expect more later) is that between the disability movement and patient advocacy in regard to chronic illness. Believe me, I am by no means an expert on the history of the twentieth-century disability movement (I am wading through a lot of articles, though, and am happy for any suggested resources). But from a macro perspective, and doing some major summary here, a lot of disparate patient populations eventually came together under shared goals: respect, employment, accessibility, etc.

Despite the fact that many patients with chronic illness also fit under the umbrella of disability, I do believe distinct differences remain. Reading other blogs and discussion forums, I am often amazed at the sheer variety of chronic conditions out there, by the way some non life-threatening conditions can be really incapacitating, some life-threatening conditions can have the appearance of relative functionality, and how quickly things can change for people. As patients, those with chronic illness have so many different needs and challenges.

So what are the shared goals of the chronically ill, and the catalyst that unites different disease groups and patient populations? Is it health care reform?

I’ve still got a lot of thinking and reading to do. Your thoughts?

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