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!)

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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.

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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?

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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 clichéd 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.

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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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Type A by nature or by illness?

So here’s the truth about me: I’m a bit…obsessive. I wake up in the middle of the night with a jolt, knowing suddenly that I have a typo on a certain page of a document. I can’t go to bed without making a To Do list for the next day, nor can I feel relieved or productive unless I am able to cross every item off that list.

It gets worse. I still remember the questions I got wrong on standardized tests from several years ago and can write them out, and it is with equal queasiness that I can play back every word of a fight or disagreement or awkward situation verbatim, wishing I’d have said this or cringing that I’ve said that.

Not surprisingly, such tendencies also mean I like to be in control. I never liked group projects because I figured I could do a better job on my own, and when I served in editorial positions of power, I had to constantly remind myself that delegating the work out to the staff was a positive thing, not a necessary evil. My dog got lost last year when someone was watching her, and since then I have become a total helicopter mom. At dog parks, I can’t relax and instead, stand guard at the gates lest anyone leave them open for even a second. When my parents watch her, I plaster their back door with signs reminding everyone not to leave the door open.

Too much hubris? Probably. Too much energy wasted on wishing things were perfect and making sure everything unfolds just so? Definitely. Qualities I’m proud of in myself? Not really. But at the same time, they are qualities that are partly responsible for the things I have achieved, and I can’t help but feel that our biggest weaknesses are also often our strengths—it just depends on the degree to which we allow them to dominate.

I’ve always chalked a lot of this perfectionist/control stuff up to the fact that I have always been so sick: I can’t control so much about my life, so what I can control, I try to do in full force. I take the large issues, the life-threatening ones, in stride, so it’s sometimes the smaller stuff that frustrates me. It makes sense, and it’s certainly a convenient rationalization on days where I wish I could just escape myself a little bit.

But lately I’m wondering about how much of my personality is defined by illness—or, more accurately, a reaction to the presence of illness—and how much is just my personality. Would I be this way I was healthy? Since I’ve never been healthy, I just don’t know. I know that in various ways I am a lot like my parents, but then again for as long as I have memories, they have been sick, so that doesn’t help me tease it out much. I could have inherited these traits from them, or I just inherited a lot of medical problems and the three of us happen to respond the same way to illness.

I guess since I have no “before” and “after” when it comes to illness I will never know where illness leaves off and plain old Laurie begins when it comes to these qualities, but in the end that doesn’t really matter. What’s more important is maintaining that balance between strength and weakness that keeps me going without making me go a little crazy.

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A Bumpy Trip Down Memory Lane: Illness and Accuracy

Lately I’ve been playing an annoying and ultimately counterproductive game of “What If?” You’ve all played this in some way or another, so you know as well as I do that it never ends anywhere good, does it?

Specifically, I have been asking myself “What if I had energy?” When I get frustrated over my current lack of it, I can’t help speculating: What would it feel like to make plans and be able to keep them? What would it be like to not need an entire pot of coffee (gross, I know!!!!) in order to function? What would it feel like to come home at the end of the day and accomplish something other than collapsing on the couch? What would I do if I woke up in the morning without feeling foggy in the brain and achy in the muscles? Most of all, what would I say if I didn’t have to say “I’m too tired” so much?

Really helpful, right? To make it worse, I’ve been looking back to my college days, when I was what I considered really busy—I took five classes, worked on the campus newspaper, interned at a national newspaper, volunteered at the hospital, etc. “I wish you knew me when I had energy, when I could do everything I wanted to,” I say to my husband every now and again. Suddenly, the old me seems so much more productive and engaged than the person I know now. I still juggle a lot of projects, but I’m not pulling 18 and 20-hour days at a stretch like I used to; I can’t even contemplate being out and about that long anymore.

But memories can be deceptive, and when we look back at them, there’s often a reason, an agenda or subconscious motive, that skews how we see ourselves. We can re-write past romantic relationships as either wonderful or terrible, depending on what we need them to be to feel good in the present, or we can reconfigure academic or professional failures to be someone else’s fault when it hurts too much to accept them for what they are in the here and now. The list could go on and on. When I look back at the “busy” me and see this stage as something to strive for once again, I think it’s really because of two things: 1. It is hard to admit how much has changed in terms of my health and 2. I have a hard time scaling back and doing this is a way to thwart my own progress in doing so.

When I really look at the facts, I can see how misleading my own nostalgia really is. First of all, I did have more energy back then because my adrenal system hadn’t failed yet (that would happen two years out of college), I wasn’t dealing with steroid withdrawal (I was still on them full-throttle), and my chronic fatigue wasn’t exacerbated by these two other complications like it is now.

Secondly, I was my own worst enemy in those days—I’d run myself to the ground, get an infection, and then spend several weeks a semester in the hospital as a result. Sure, I had energy for a couple weeks at a time, but I pushed too hard and wound up paying for it. It is convenient to overlook that fact when I wax nostalgic about how over-extended I used to be, but the reality is that the way I acted didn’t give my body a fighting chance to establish any sort of control or stability.

So I may not run around in a million different directions and I may not define myself by the number of activities I do, but I have more balance. Yes, I wish I had more energy and yes, I miss being able to do things I want to do, but regressing to my former way of living certainly isn’t going to improve that scenario.

Now, if only I could remember that more when I start to play “What if…” Nostalgia is inevitable, but it isn’t always accurate.

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Gluten-free Beer? Guzzle Away!

It’s been awhile since I’ve devoted space to the celiac dining experience (though I have been busy compiling new favorites for my gluten-friendly restaurant list!) Luckily, though, it seems others are taking care of that for me–today’s Sunday Globe ran a great article on gluten-free beer.

Now, I know GF beer has been around for awhile–I’ve even tried a few brands, despite being more of a cider girl myself–but what is important about this is that the beer, Redbridge, is prodcued by Anheuser-Busch. In other words, we’re mainstream! Gluten-free options for the millions of Americans living with celiac disease have come a long way since the dark days of even a decade ago, when no one had heard of the disease and grocery store shelves were lined only with forbidden foods. We’ve seen gluten-free pretzels and breads, gluten-free baking mixes and soy sauces, etc–it makes sense that to open up the gluten-free market to include alcohol. Cheers!

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The Professional Patient on Trial: What Health Care and Civic Duty Have in Common

Jury duty. Two words synonymous with logistical issues, scheduling conflicts, and all around grumbling, right? (Except for that one person in the jury pool who really, really wants to be impaneled…there’s always one).

I didn’t really want to be put on a jury. It was the first week of classes and not the best time to abandon my students, but I was the second person seated in the jury box. All I knew about criminal trials came from Law and Order (and sadly, this prosecutor was no match for the intrepid Sam Waterson), so at the beginning, none of this seemed real to me.

And then the trial began, the courtroom filled up with friends and family members of the young defendant who were staring at me, and I realized how very real this was to all of them. More than that, I realized that I was entrusted with the deciding this 20-year-old’s future (or, at the very least, the next several years), and it was a power I wasn’t sure I wanted. My only credentials were that I was a citizen, I believed in innocence until proven guilty, and unlike other jury pool members, my time conflicts were not so substantial that I was dismissed for them.

What really struck me was how vulnerable the defendant was. He had to trust the six of us to be fair, impartial, and reasonable, and he gave up all pretenses of privacy the moment he entered the courtroom. As I held his Miranda rights agreement form in my hand and looked at his signature (did he ever think when he signed that form that a total stranger would be scrutinizing it as evidence?) it hit me how personal a signature really was, how all the time we sign forms and waivers and disclosures without really thinking about it.

So what does this have to do with health care? A lot. Namely, that innate vulnerability that comes with signing away our bodies to various forms and consents and entrusting our fates in the hands of other people as a result.

When I was appointed jury foreperson, the weight of our collective responsibility seemed even heavier. We were tired, we were hungry, and we’d already logged some long days in the courtroom, but I emphasized that we couldn’t rush deliberations, that at the end of the day we needed to be able to look at this kid and his family and know we did our best to be thorough and fair.

In the back of my mind was a scene from this past summer, when the cardiac surgeon in charge of my father’s complicated procedures ducked into a conference room and quickly sketched all the blockages he’d found in my father’s heart and ran through the options he had for fixing them. He only had a few minutes to discuss things with us; there was a long line of patients he needed to get into the cardiac cath lab after my father.

He was experienced, smart, and a top-notch surgeon, but that didn’t comfort me in the moment. I wanted him to slow down, to really weigh the different options and potential outcomes and complications with us, to treat my father not as a case to get through so he could move onto other things but as an individual worth all the time and consideration his future required.

Wasn’t that the same fundamental role of the juror?

I’d spent enough time in waiting rooms to know that when the fate of the people you love most in the world rests in someone else’s hands, all you can do is hope and pray they proceed with caution and wisdom. I’d spent enough time resting my own fate and my own body in the hands of doctors and surgeons to know what it feels like to be vulnerable, to wait for a verdict or outcome that may not be what you were hoping to hear.

So maybe I brought something else besides basic citizenship to the deliberation room—after all, vulnerability is an equal-opportunity emotion.

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An Outsider Finds Her Way Back In

I was indulging in perhaps too much introspection the other day as I told my husband that sometimes I feel like very few people in my life are at the same stage in their lives as I am. He countered with the view that every person is a unique place at a particular time, so really everyone probably feels like this.

I know in a lot of ways he is right, but at certain moments, I feel like an outsider. For example, while a lot of my friends have recently gotten engaged, only a couple of them are married. That isn’t a huge deal, but our social lives are certainly somewhat different as a result. The married people I do know all seem to be having babies left and right, and for the most part, they have (thankfully) had very healthy and uncomplicated pregnancies. Everyone knows about infertility, but few people I know have any personal perspective on it.

While a lot of my friends are in corporate environments where they have lots of co-workers or are in graduate programs with a heavy emphasis on social events and bonding, I am a writer and often work alone from my home office. I love the interaction with my college writing students and thrive in being in the classroom, but though I like many things about the adjunct life, it makes it very difficult to get to know other colleagues. Sometimes our office hours overlap and we catch up or grab a cup of coffee, and those conversations are always refreshing and energizing for me.

Don’t get me wrong, I have no doubts about the choices I’ve made and I love what I do, but some days it feels like my social circle gets smaller while everyone else’s gets wider.

None of these points are monumental on their own—it’s only when I combine them with having chronic illnesses that they can sometimes seem isolating. I don’t know many 26-year-olds like me. I have conditions few people have heard of, have had more random and ridiculous medical mishaps (enlarged organs, rare infections, unexpected complications, etc) than I can even remember accurately, and I have simply never known what it feels like to be healthy. My parents are obviously both sick, so in that sense I have people in my daily life who understand what it is like. But on days when it is a struggle to get out the door and make it through the day and I pretend to my students and colleagues that I am well, I feel alone…and the days where I am forced to stay in the house because of an infection or a flare, I feel that more acutely.

Certainly I feel the physical isolation of illness during those times, but more profound is the emotional isolation of it. I’m in my own little world when I want to be part of the one that keeps on churning outside my window.

Then I happened upon a wonderful post discussing similar thoughts, and it made me realize that it’s okay to recognize these feelings now and again. I don’t want to dwell on them too much, but they are real to me and real to other people as well, and while there isn’t one magical panacea that can “fix” them, just putting them into words is a start.

And I began to appreciate the power of shared experiences and the accessibility the Internet offers the millions of people like me out there—I may not know too many people like me in person, but while everyone’s medical constellations are different, there are certainly people who experience the same types of frustrations and occasional isolation as I do. It’s not often that I write about writing (or blogging, as it were), but this meta-conversation lifted me out of my indulgent cloud and made me realize there are many people like me–and if I click onto the right site, I may just find some commiseration.

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