Thursday, August 20, 2009

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.

Friday, August 14, 2009

Comparing Facts in Health Reform

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.

Thursday, August 13, 2009

Synergy (in an unexpected way)

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.

Monday, August 10, 2009

Illness vs Disability

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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