Monday, January 29, 2007

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.

Monday, January 22, 2007

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.

Sunday, January 14, 2007

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!

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.

Friday, January 05, 2007

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.

Wednesday, January 03, 2007

New Year's Anniversaries

For a long time, the holiday season was more than simply a time to decorate the house, see lots of family and friends, and engage in all the rituals and traditions we hold dear. It was also synonymous with being in the hospital—for seven out of the last eight years, I’ve spent either Thanksgiving and Christmas or the days before and after them in the dreary world of the hospital.

Between end-of-semester craziness, grueling hours, all the associated extras of this time of year, and the infections and viruses that go hand in hand with the colder months, I didn’t stand a chance of getting an infection and not ending up in the ER or the inpatient floor.

While Christmas and Thanksgiving and all the time in between are marked by illness, New Year’s has started to take on much more positive associations for me. Three years ago on New Year’s Eve, I met the man who would become my husband. (See the article about this published in the Boston Globe Magazine here). With that meeting, my life began to turn around. Right round the same time, I was diagnosed with PCD and celiac disease, started my daily chest PT and rigorous new medication regimen, and finally began to fully understand why I had always been so sick. Just as my medical history finally started to make sense and I was on the right track in terms of establishing some stability, my love life fell into place as well.

Since then, New Year’s Eve has been much more meaningful to me—I’ve always hated the stupid hats, noisemakers, and inevitably disappointing parties that symbolize typical New Year’s revelry. But now it’s the anniversary of when I met John and stands for the period in my life when things started to change for the better in every sense—which, by the way, is no coincidence.

Every New Year’s since then I try to build on that sense of renewal and hope and try to build on the gains in my health (and my relationship and professional life) that I started to accumulate three years ago.

Last New Year’s Day I needed to go to the hospital. However, unlike most of the trips of my holiday past, I was only there overnight. This New Year’s was a huge milestone for me because it marked exactly one year since I’ve needed to be hospitalized for respiratory problems. Sure, I’ve had plenty of nasty infections, lots of bad days, and new complications. But I’ve been able to maintain a stable prognosis for 12 months, something I haven’t been able to say in more than a decade—here’s hoping 2007 continues the trend.

For all you chronic people out there, no matter what your goals for 2007 are in terms of maintaining your best health, lots of luck!
Powered by blogger. Customized by PinkDezine.