Thursday, February 22, 2007

Lenten Resolutions: Caffeine, Clarity, and Contrition

I am sitting in a Starbucks right now, ostensibly preparing for my next class, but in reality I am distracted by the wonderful, luring aroma of espresso. Its scent lingers on my clothes and I can almost taste it. It is my Siren calling for me, tempting me with promises of pleasure and joy.

I am drinking tea. And I’m clearly not that psyched about it.

Before I totally martyr myself, I should probably mention that I gave up espresso-based drinks for Lent and cut down on relgular coffee, but I didn’t give up caffeine altogether (that would be a kamikaze mission for me; I tried it once a few years ago and within two days, my boss politely wondered if I might think of something else to give up since my productivity had taken a noticeable nosedive and my headaches were blinding). But since I do waste a sizable amount of money on sugar-free, nonfat latte concoctions at least six days a week and haven’t attempted to teach a late class without an espresso infusion in three years, it is something.

I’ve already acknowledged the absolutely disgusting amount of caffeine I drink in previous posts—a pot of coffee on my own in the morning, and the life-saving latte in the afternoon, at least. At this point, I’m beginning to see it as more than just a conversation piece (you think that’s gross? Listen to how much coffee I drink!) and as some sort of personal failing—how in hell did I get to this point? And to top it all off, it doesn’t even help. I’m still brain-foggy and slow-tongued by late afternoon.

Combined with my other Lenten resolutions, I hope the caffeine-cutback makes me less disgusted with myself. I’ve also cut out eating in between meals (my equally night-owl husband and I have been known revert to college behavior and run out to 7-Eleven to buy frozen yogurt at midnight or throw a bag of popcorn in the microwave in time to watch the Daily Show, not really the best way to eat).

Over the past few years, though, I’ve started to see the merit in not just giving things up for Lent but in making changes/improvements and adding positive behaviors to my life. My theme for this Lent is balance, not just in terms of maintaining health conditions (that’s a given) but in terms of setting aside time to reflect and also in terms of clearing my mind of negative or hurtful things: not getting so buried in student papers and revisions on Sundays that I don’t make it to church; not backing out of weekend plans with friends or my husband because I’d rather use those five four hours for work; not getting bogged down by passive-aggressive anger when calm confrontation would cause much less pain, etc.

So that’s where I stand. As my good friend said yesterday, you can do things for Lent for faith-based reasons or because you like the personal challenge (I subscribe to both), but either way, it is a chance to let go of some of the obsessions, indulgences, and pettiness that we’re better off without.

So here’s to less caffeine, less workaholic tendencies, more introspection and reflection, and more mature ways of handling problems. (But I’m not going to lie, I’m already salivating for my Easter Sunday sugar-free, nonfat cinnamon dulce latte!)

Sunday, February 18, 2007

Emergency Surgery

The instruments were sub-par, the lighting wasn’t ideal, and the surgeon was plying his technical trade for the first time, but against all odds, the surgery was a rousing success.

In the grueling pre-operative moments, I went through many emotional states. There was disbelief: I can’t believe this is happening (again). There was sorrow: I can’t imagine what I will do if I have to suffer this loss. There was anger and denial: But I’ve done everything I can, I’ve taken all the precautions and safety measures, I’ve performed all the maintenance and follow-up. This can’t be happening to me.

In the end, though, an eyeglass repair kit hastily purchased at 7-Eleven and the two sturdy hands of my intrepid husband proved enough to perform a delicate operation on my sickly little Powerbook G4.

The bizarre DOS language that took over the screen, the incessant kernel panic message that froze and crashed the computer every 10 seconds, the horrible shrieking sound it omitted whenever I tried to run a disk repair, the terrifying hieroglyphics that appeared where a lovely Microsoft Word document had flourished only moments earlier—in the end, all these malignant forces were no match for the two of us, battle-weary and used to the wily ways of the shifting internal network card whose movement wreaked havoc for my hard drive.

We’d experienced cataclysmic moments with it before, we’d tasted fear and considered the worse-case scenario, so we thought we were veterans by now. Nothing could have prepared us for the full onslaught of last night’s carnage and disease, the symptoms of which first appeared at the corner coffee shop around 8pm and whose groans and machinations did not end until this morning. For the first time, I really thought all hope of salvaging my beloved little titanium wonder was gone.

But with a flick of his wrist, the turn of impossibly tiny screws, and the re-alignment of one pesky, wriggling network card, John brought my computer back to life. Since my G4 is almost an appendage at this point—I use it easily 14 hours a day during the week and only a little less on weekends, and practically twitch if it isn’t in my vicinity at all times—the prospect of losing it was inconceivable.

Luckily, my computer is again whirring and clicking away as it should, the picture of health…and life for me can go back to normal. You gotta love it when acute triage solves the problem.

Friday, February 09, 2007

Food is Love

I met John exactly two weeks after I was diagnosed with celiac disease. At the time, I was just as apprehensive about the whole situation as he was, though we manifested it in different ways. Our first date—while wonderful—included several renditions of the following:

“Are you sure you don’t mind if I have some bread? I don’t have to…I can even ask the waitress to take it away if it’s bothering you.”

“No, it’s fine. I don’t mind. Just because I can’t eat it doesn’t mean you shouldn’t.”

And back and forth we went, both trying to make the other one comfortable and not exactly sure how to do that.

He told me later that of all my health problems, celiac disease was the only one that scared him initially—he loved eating out so much and wondered if we’d have enough in common. Naturally, the irony of that statement is that it turned out to be food that brought us together, and food that helped him bring me back to myself.

That night I ordered a salad. I didn’t want to be the “that girl,” the one who only eats salad, especially on a first date, but I was too nervous to try anything else on the menu. Grilled chicken over greens? Now that was a dish I knew was gluten-free.

We both have a lot more confidence now.

Going gluten-free was certainly life-altering, but I had so much other stuff on at that point in my life—I was in and out of the hospital several weeks a month with respiratory infections, and had also just gotten officially diagnosed with PCD and bronchiectasis, which were pretty serious and life-changing events on their own. I was adjusting to new medications, dealing with a lot of lung-related complications, and had only recently started having chest PT twice a day, a huge transition all on its own.

With so many substantial changes and serious illness all at once, eating salad for lunch and dinner and yogurt for breakfast was an easy way to stick to the GF diet without investing too much time and energy that I didn’t have. Plus, as a single girl living in an apartment the size of a large suitcase, less groceries and cookery meant more space to live.

And then we had our second date, and our third, and suddenly I was going to Italian and Malaysian and Mediterranean restaurants, and ordering a garden salad wasn’t cutting it anymore. John loves trying new things, and I wanted to enjoy dining as much as he did—and, obviously, I wanted him to enjoy dining with me. I started asking questions about meals and learning the best way to approach servers with my allergy concerns.

And something else happened—we began cooking meals together. John would print out GF recipes he’d found online and we’d go to the huge grocery store near his apartment. Left to my own devices, my shopping cart still consisted of lots of lettuce and some organic soup, but we branched out together: gluten-free flours for apple pies, cornmeal for polenta pizza, spices for homemade Indian food and fresh vegetables for stir-fry. I began to look forward to cooking the way I had when I was younger; John’s creativity was contagious.

Before I knew it, I was eating hot food again on a regular basis. I was also finally starting to feel better—my energy was improved from the GF diet, and my lung infections were less severe and my time in the hospital decreased as a result of my new treatments. Soon, I noticed another change, something I hadn’t seen during all those long months of being in the hospital and being preoccupied with all the adjustments I had to make: I was happy.

We’ve been married a year and a half now, and we’ve done even more adjusting. John no longer eats exclusively gluten-free meals in our home—he no longer worries he should, and I no longer worry that he’s worrying. Some nights, he has ravioli and I make brown rice pasta; other nights we have naturally gluten-free risotto or roasted chicken or tuna steaks.

For this Valentine’s Day, John made our plans a few weeks ago. He selected a restaurant we’d always wanted to try that had a special pre-set menu for the occasion. He shot me an e-mail:

“There are a bunch of options for you that are safe, I checked. The menu is attached. What do you think, do you want to go out to dinner?”

This Valentine’s Day I think just might try the grilled ostrich skewers…you’ve got to live a little, right?

Monday, February 05, 2007

Waiting to Exhale

It still hasn’t sunk in yet. On Friday, I accepted an offer to publish my first book. Normally I find it impossible not to betray how I am feeling—the high lilt or slow lull in my voice says it all—but this time, my tone reflected little emotion.

“Give me a second. I am really excited, I swear…it just doesn’t seem real yet. You know, when you think about something for so long and want it and work towards it, and then you actually get it, it doesn’t seem real, like this isn’t happening to you,” I said to my agent.

In a sense, it all happened pretty fast: five months ago, I found an agent, three weeks ago my submissions package went out to publishers, and three days ago my book found a home.

But as all of you writers out there know, none of this happened quickly. It’s been a lifetime of writing—of needing to, wanting to, having to write…A lifetime of journals and diary entries, of stories and articles, of high school competitions and college op-eds, of high-intensity internships and relaxed writing workshops, of literary criticisms and news articles…A lifetime of sojourns to coffee shops and libraries, of late nights and early mornings, of days spent alone at my computer, of revising and reworking and refining, of knowing that the times when I feel most alive, when things connect and spark and I have energy, are when I am writing.

As clich├ęd as it may sound, I’ve wanted to “be a writer” for as long as I can remember. I didn’t know what that meant in those days, beyond that it was the standard prediction all my grammar school English teachers made for me, and that I couldn’t help thinking of Jo in Little Women whenever they made such comments.

Twenty years later, I’m still trying to figure out what exactly “being a writer” means.

What I did know then (and recognize still) is that words made sense to me then when so many other things in my life didn’t, and words defined me in ways I desperately needed. When I was growing up, my classmates had sports banquets and track meets and health; I had writing awards and journalism conferences and scribbled entries into all the journals I kept. I had writing, so my illnesses could never totally overwhelm how I thought of myself, even during the really difficult times.

For all the projects and roles and jobs I now have, for however complicated I might be tempted to think my life is, my true ambition, my deep down desire and hope, the thing that drives me, terrifies me, and humbles me, is quite simple: I want to write books.

It is the easiest statement I can write, and yet it is the one I am so hesitant to vocalize, half-believing if I show how much I want it, it will remain elusive.

I often stumble when people ask me what I do: “I teach writing classes” or “I freelance” or “I’m working on several projects” or “I do editorial work.” Only once have I replied “I am a writer,” and even though I spoke the words, I didn’t own them. I feigned confidence but felt fraudulent.

So what does it take to embrace that identity, at what point is it possible to say “I am a writer” and believe that the elusive dream is a genuine reality?

I know that I am taking a first step towards that scary, powerful, humbling thing I want. I know that in a life filled with compromises, accommodations, and complications, this feeling, this exhilaration, is pure and unfettered. I know that I have much work left to do, that this place is the only the beginning, but I also know it is where I need to be.

Saturday, February 03, 2007

Media Controversy and Rare Diseases (PCD and EDS in the News)

I have lots to post about--it's been an exciting week--but until I do, here's some reading for thought, especially for all of you out there who belong to the Rare Diseases Club. By now, I'm sure you've read or heard a lot about the backlash from ABC's "Medical Mysteries" show and the effect such portrayals of rare diseases have on the people who live with them, but here are two thoughtful and informative posts:

MickeyMusing's blog takes aim at "freak show" tendencies in the media and specifically touches on PCD (primary ciliary dykinesia). I must admit, it's not often I see my near and dear PCD in the news, and this article underscores the reality for the millions of people living with rare diseases: the burden is on our shoulders to educate, inform, and enlighten.

(On that note, see my sidebar to get to the PCD Foundation!)

Yanub's "Moblizing Against Misrepresentation" is a constructive answer to the current debate over how patients with EDS were cast on a recent episode of "Medical Mysteries."

I show Tod Browning's "Freaks" to students in my class (Constructions of Health in Contemporary Literature) in an effort to explore how image and language influence perceptions of "normal"--perhaps we're not as enlightened in 2007 as we'd like to believe..??
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