Thursday, November 29, 2007

Autobiography of a Face (and November Carnival Ready)

Before I get into anything else, let me make the following premise: In no way am I comparing a measly two weeks with a swollen jaw and a liquid/pureed diet to a potentially terminal cancer, removal of one-third of the jaw, and a lifetime of pain and reconstructive surgery.

That story belongs to the late acclaimed poet and writer Lucy Grealy, and it is found in her remarkably candid memoir, Autobiography of a Face. I first read this for a nonfiction book workshop in my MFA program and of all the books I read for the course, this is one of the ones I could never forget.

Grealy writes about truth, sickness, suffering, beauty, perfection, and loneliness. The facial disfigurement she experienced after her tumor was removed and the endless rounds of hospitalizations, surgeries, and unmet expectations that followed are not rendered in strokes of sentimentality or self-pity. As a narrator, Grealy is at once irascible and inspiring, frustrating and courageous, determined yet jaded. She doesn’t hide her flaws, both the physical as well as the emotional.

I’ll be honest, some aspects of the book irritated me—why, for example, does her twin sister only come up once or twice in the whole story?—but even beyond the dramatic events and the soul-churning upheavals, the writing itself is beautiful and lyrical.

I was reminded of this book at several points during the last few weeks. For Lucy, opening her mouth wide was an excruciating ordeal, one made even more awful given how much dental and reconstructive work she needed. Eating was a daily exercise in futility; not only was it hard to open her mouth, but she lost many teeth to her various surgeries and complications. These things paled in comparison with the taunts of her schoolmates and the devastating impact looking different had on her psyche, but they had an impact nonetheless. Simple things like swallowing, chewing, laughing or yawning should not have to be conscious things.

Again, clearly two weeks of chicken broth and liquid food does not give me any rights to claim kinship or understanding. I know that. But if nothing else, recent events have rekindled my respect for a writer who died too young, whose words contain grace and eloquence even when they are baring unflattering truths, and whose perception is unsettling:

“I used to think truth was eternal, that once I knew, once I saw, it would be with me forever, a constant by which everything else could be measured. I know now that this isn’t so, that most truths are inherently unretainable, that we have to work hard all our lives to remember the most basic things. Society is no help. It tells us again and again that we can most be ourselves by acting and looking like someone else, only to leave our original faces behind to turn into ghosts that will inevitably resent and haunt us…It suddenly occurred to me that it is no mistake when sometimes in films and literature the dead know they are dead only after being offered that most irrefutable proof: they can no longer see themselves in the mirror,” (222).


Since we’re on the subject of pain (excuse the transparent segue here), How to Cope with Pain is now offering a monthly Pain-Blog Carnival during the last week of every month, to include each month's best posts. New bloggers are always welcome to contribute. Check out November’s edition here. You may just recognize someone here and there...

Saturday, November 24, 2007

Giving Thanks Recap (Straw included)

Okay, so perhaps this is the obligatory (and late) Thanksgiving post, but maybe there’s a reason it is obligatory—how can you not stop and reflect a little bit when you’ve just celebrated a holiday whose main purpose (besides setting up those Black Friday sales, apparently) is to express gratitude?

Let me start off this discussion by letting you know I am an exceptionally classy girl. I drink my champagne (teeny tiny amount, given the massive antibiotics) out of fine crystal. Sparkling crystal, with a satisfying weight and heft.

With a straw.

Yes, a straw. The straw that accompanied my drinking of water, juice, and other clear fluids and was only replaced by a demitasse spoon when I tried to eat my Thanksgiving chicken broth and pureed potatoes. Somehow, the nasty infections I’ve had the last month or so gravitated to my jaw, which is all swollen and inflamed. It’s been all broth, all the time in my world.

But I didn’t really mind. For one, it was still better than the festive Thanksgiving can of vanilla Ensure I had a few years ago when I was six days into an inpatient admission. For another, since I am both gluten-free and dairy-free and the best of the traditional family recipes depend on copious amounts of both gluten and dairy for their flavor, I have long since abandoned the notion of getting too excited for Thanksgiving dinner.

Which, I suppose, is my point here. It doesn’t matter what foods you can or can’t eat. For one meal, it doesn’t matter whose heart has stents, whose sugar needs to be tested, whose back hurts or whose lungs are congested. It doesn’t matter how many aches and pains are present, who is tired or run down, who is coming down with something or who isn’t yet over something else. It doesn’t matter how many body parts don’t work right.

The food is important, the traditions have meaning. But they only have meaning because of the people who have created them and maintained them, the people who gather around the same table every year, making toasts with heavy crystal and passing plates around. So even if you can’t eat the pie or the stuffing, even if you pass on the dessert because it has too much sugar, even if you need some help passing a big bowl of potatoes because your arms are too weak, you’re still part of something larger than any recipe or any one meal.

So for that something larger, and for all those parts that do work right, and for the gift of presence and participation—I am grateful.

Friday, November 16, 2007

Structural Humor and Other Musings…

Life has gotten in the way of posting lately, what with various infections landing me in the hospital, freelance deadlines, student papers, starting the lovely process of selling one home and buying another…But in the midst of the pre-Thanksgiving log jam, I found this little anecdote highly amusing:

We had a home inspection scheduled for the same weekend I ended up in the hospital. We told my parents that we were bringing in a structural engineer to look at some issues that came up during the inspection, but between coughing and not having a voice and the general craziness of rapidly declining health, I hadn’t mentioned this development to anyone else. A well-meaning family member called my mother to see what was new with me. My mother replied,

“Well, the structural damage isn’t quite as bad as it could have been.”

Confused, the other family member was left to ponder if she was referring to me or to the house. I was the obvious choice, and he felt confident in his selection.

“No, no, I’m just as structurally defective as ever,” I said when he relayed this to me.


“But it’s okay. I would have picked me, too.”


As I told my editor this week, I think I got my end-of-semester illness out of the way early this year. Ok, it’s still lingering, but I remain optimistic. For as long as I can remember, (we’re talking nursery school here) November and December have always been plague-ridden months in my world. When I was in grade school I always had surgeries right around this time—a few times on Christmas Eve day, even—and throughout college I always wound up in the hospital near or during finals.

Awesome timing.

In the dark days of misdiagnosis, when my doctors were scrambling to figure out why my lungs got worse no matter what they did or how many steroids I took, they were wont to ply me with this: “Are you sure you’re not stressed out? Maybe stress is causing all these exacerbations.” Because we can’t figure out the real problem, we’ll put it back on you.

As calmly as I could, I explained time and again that being stressed did not make me sick. Being sick and knowing I was then going to fall behind in studying for finals and miss all the end-of-semester festivities? Now that made me stressed. They had it backwards.

Know what I mean? I'm not foolish enough to say that stress doesn't make health conditions and situations worse. Of course it does, and of course it has for me. But it's a cop out for someone to say stress is the cause of illness simply because he or she can't find an obvious answer and isn't willing to dig deeper to find the correct one.

I never backed down from this assertion that they had it in reverse, even when I missed both Thanksgiving and Christmas one year because I was in the hospital. Luckily, I now have doctors who know that the reason my lungs don’t respond to asthmatic protocol is because my problems are not caused by asthma. (Cue resounding duh here). But I have been thinking a lot about this time of year, and why it’s usually such a disastrous period of time.

It’s really not that complicated. It’s cold and flu season. More people are clustered indoors because it’s colder out. There are more social engagements to keep us out late, and more errands and cleaning and cooking to do on weekends when we would normally have some downtime. There’s a crunch to get big work projects finished before year’s end, so even though we’re out later and more often, we find ourselves getting up earlier. And no matter how healthy we are otherwise, the more run down we are, the more susceptible we are to the many infections that travel around this time of year.

Somehow, this seems like a much more plausible explanation. And it is one more reason why I have never backed down.

Friday, November 09, 2007

On Options...

“ I just wish I had some better options,” a colleague said to me recently. She wasn’t someone I knew well, and it started out as one of those casual “how are you?” kind of talks.

At the beginning of our conversation these are the thoughts that ran through my mind: I hope it’s not still raining. My throat is burning, I think I am coming down with something. I am way behind on my novel’s word count. Ouch, my throat is really burning. Do I have a fever?

I listened, at first exchanging pleasantries and then nodding in commiseration with her plight, even though I couldn’t really commiserate.

“You see, it’s like I have to choose between paying the rent and health care,” she said, an untenable position made even worse by the state’s new health care law. “I need a place to live so I pay the rent, but then I go into more debt for the health care.”

That’s a pretty lousy choice to have to make, particularly since it really isn’t even a choice. You need somewhere to live, and if you’re sick, you need medical attention.

I turned away a little to cough and when I faced her again my face felt flushed. Perhaps it was from the cough, or the fever that would ultimately knock me down for several days, but I also think it was from that squeamish uncomfortable feeling that comes with knowing you are a “have.”

And someone else is a have-not.

In a way, it all boils down to options. I could never imagine the possibility of paying for my care out of pocket, because the expenses would grind me into the ground almost immediately. It simply wouldn’t be an option for me.

But what if it had to be?

This is an intensely political issue, but I am coming at it from an emotional perspective here. I have sighed when I’ve written large checks for hospital bills, cringed when I’ve needed new medications that are expensive, and I’ve watched with a mix of indignation and sadness as coverage of my daily chest PT sessions—the preventative care that does much to prevent prolonged (and costly) hospitalizations—have been cut down further and further the past three years.

I find many things confounding and unfair about our health insurance system.

And yet that on that cold, rainy day when I knew I was definitely getting sick, where I coughed and wheezed and listened as my colleague said she may have to move of the state because of its prohibitively high cost of living, there was something else I felt. Something besides the jarring cough, the first flush of fever, the awkwardness:

Relief that I did not have to choose between my house payment or my health payment. Gratitude that while my coverage has decreased over the years, I am still covered. Gratitude that when I went home that afternoon—I wouldn’t be able to leave the house again for several days, as it turned out—I would have a supply of medicines and treatments, a doctor who was just an e-mail away. I would have options.

Since I wrote this post on watching someone you love in tremendous pain, I have been thinking a lot about gratitude, and the mix of emotions that come with it. I hate that someone I care about is suffering, but I know I am lucky I do not have her pain.

Likewise, I may have lungs I would classify as dodgy on their best day and down right contrary on their worst, or an immune system that’s about as good a defense system as an unlocked door adorned with a “Come on in” sign, or an endocrine system that is routinely haywire, for example, but (you knew a “but” was coming, right?) this is not all that I have.

I have legs that may hurt sometimes but get me where I need to go. I have a healthy heart and good blood pressure and when I go to the gym and feel my muscles work, I am proud of them. I have many parts that work well. I also have a network of people who love and support me, who watch out for me, who ferry me tea when I cannot stand and who encourage my greater goals when I am scared I will fall down.

Someday I will write a post about the current state of our health insurance system. Maybe I’ll even commit to a course of action for trying to resolve some of these glaring problems, because with each word I type I am conscious of the many, many people would not be in the position to say this:

I have options.

Thursday, November 08, 2007

New Voices (Who Make Me Think)

Dayna at A Bug’s Life is a new reader of mine who not only runs a wonderful blog about parenting children with chronic illness but also tagged me recently with another Thinking Blogger Award for this post—thanks so much!

In the spirit of discovering new blogs, the five sites I have selected for Thinking Blogger Awards are either fairly new to me, fairly new to the blogosphere, or both:

Hemodynamics: Joe is a first-year intern in a large academic hospital. He also happens to be an eloquent writer who contributes to NPR and is writing a book, among many other pursuits. Check out what a powerful combination that is.

Sick Momma: Aviva is a longtime journalist who is now a stay-at-home mom. Or she was, until a serious illness suddenly took over her life in June of 2007. Now’s she on a path to figure out what’s wrong with her and make some sense of all the changes—and she does it with honest, engaging prose.

I’d Like to Buy A Vowel: As you can see from her blog’s name, Alicia approaches living with a not-so-funny chronic illness with witty, sarcastic aplomb, and her musings are compellingly universal yet specific to her. You’ll love the voice here.

A Medical Mystery: JC might have a rare disease and her fair share of medical mysteries, but she’s also got a good sense of humor and a lot to say about being what some people have called “that girl with the bone thing.”

Respiratory Therapy Cave: Freadom is a respiratory therapist. RTs are a huge part of my life, both inpatient and outpatient, and it’s really interesting to see the perspective from the other side—especially when the writing is thoughtful and honest.

For the winners:
1. If, and only if, you get tagged, write a post with links to five blogs that make you think.
2. Link to the blog so that people can easily find the exact origin of the meme.
3. Proudly display the “Thinking Blogger Award” with a link to the your original post

Friday, November 02, 2007

Anatomy Lesson

Various things I’ve learned recently:

That if someone cannot walk two steps on their toes or heels without trembling or falling, something is seriously wrong with their back. (Seriously.)

That if someone’s spine is crooked, fluid-filled, and riddled with bone spurs and if their disks have slid far enough in the wrong places, the pain can radiate not only down their legs and into their feet, but it can also inch up towards their head. (It’s equal opportunity!)

That when crawling seems like a reasonable option, probably that person’s quality of life could improve. (A modest request, really.)

That it is possible for the body to have learned to tolerate far too much pain for far too long. (And the rest of us are wimps, no matter what we’d like to believe.)

That even if someone takes the right medications, does the right exercises, and makes many accommodations, the body is a sneaky, shifty thing that does not bend to mere wishes. (And MRIs do not lie.)

That when doctors talk about removing parts of someone’s vertebrae and fusing other parts of the spine together, they intend to do so with pieces of that person’s own bone. (Because at first we thought it could be some random person’s bone, and that seemed sort of gross.)

That even though someone can look so small and vulnerable on the exam table and their shoulders might even quiver a bit, their eyes can still be fierce with a strength few people possess. (I mean fierce.)

That watching someone you love in excruciating pain makes you feel incredibly frustrated and completely helpless. (But then you compare your discomfort with their pain, and you realize it isn’t about you.)

Later as you stretch, or when you bend down to pick something up, or walk from the bus on your own two feet, and you don't feel a tingle, not at ounce of searing pain you know exists for someone else, you cannot help but think, I am lucky.
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