One Year Down....

One year ago I posted my first blog entry. Compelled by the sense that there had to be people out there like me—young and living with multiple chronic illnesses—and that if only I started to write about it I might connect with them, I started slowly and hesitantly. Would anyone read what I’d written, and more importantly, would anyone care about what I had to say?

The first couple of months I only posted once or twice—between graduate thesis work and my goal of posting essay-type pieces that offered some sort of insight and could hopefully stand alone, it took me a little while to find my rhythm. I began to notice a pattern—people started commenting, and their insights helped me think of things in new ways and pointed me towards all sorts of blogs and perspectives. I am deeply grateful to those of you who have found something that resonates with your own experiences enough to keep on reading.

When you live with rare diseases or multiple diseases, it’s easy to feel isolated, both in terms of day to day to experiences and also in terms of a writing community. Not many people write about PCD or bronchiectasis. I knew I wouldn’t have the huge, thriving audience that a well-known disease like diabetes would, and that while a lot of my experiences with things like infertility and chronic fatigue or celiac disease and thyroid problems related to things other people have or write about, I wondered if the fact that this wasn’t a disease-specific blog would somehow isolate me.

My hope was that the overall experience of living with chronic illness—the ups, the downs, the minutiae of daily life, the relationship moments—were universal enough to apply to anyone who clicked on my blog, that issues of identity, acceptance, setbacks, and hope transcend any one disease or condition, and, of course, that there is humor in all of this craziness.

That’s still my hope.

One year later, I think I’ve found a rhythm, one that wouldn’t exist without the people reading it on the other end.

Thinking Blogger Award

To my surprise and appreciation, Elizabeth at fluent gave me a Thinking Blogger Award. Unwittingly, she has made my job of selecting five blogs that make me think, make me question, and challenge me a little bit harder because hers would be right at the top! Thanks, Elizabeth, and your musings on writing, writers, and life in general always give me something to ponder.

With no further ado, then, here are five of the many blogs that make me think:

Musings of a Distractible Mind: This doc's curiosity is matched by his intelligence and wide range of interests. A great read.

Managing the Sweetness Within: If there's one thing Lyrehca likes to do, it's ask questions. She's asked a lot of terrific ones as she juggles Type 1 diabetes and pregnancy, and she is as insightful as she is hilarious.

Swimming Upstream: I first found this blog through Elizabeth's site and have been engrossed by this writer/MFA student's honest, thoughtful prose.

Tundra Medicine Dreams: The thoughts about medicine are as striking as the amazing photography and descriptions of Tundra life--an intellectual and visual treat.

Emergiblog: Kim's blog is informative, interesting, and always satisfying.

Ups...and Downs

I was struggling with a way to tie all the things I wanted to say into a neat little essay-type piece, so I decided to chuck the structure constraints and just go through them.

1. It’s officially springtime. Not that you’d know it from the snow on the ground and the fact that I’m wearing gloves today, but it’s a start. It occurred to me as I walked my dog this morning that I made it through a winter without being in the hospital. It has been at least a decade since I’ve said that. True, I’ve suffered from various plague-like infections since October, I haven’t been able to hear out my left ear for a couple of months now, and my peak flows have been horrid, but no matter. No steroids, no hospitalizations. Now, if my immune system and my antibiotics can hold out for a few more weeks, I think I’m in the clear.

2. When I am not jealous of Dr. Jerome Groopman (a famous doctor! A staff writer for the New Yorker! A widely-published book author! The man has that whole left and right brain strength thing going on that I can only imagine) I am wholly appreciative of and fascinated with what he writes. His newest book, How Doctors Think, tackles a subject near and dear to my heart, misdiagnosis. He argues that misdiagnosis results from mistakes in thinking, “cognitive pitfalls” that occur when doctors assume certain things based on a patient’s history or complaints and “anchor” themselves to one idea/diagnosis instead of considering broader possibilities. (See a great article taken from the book here ). Having been involved in this exact scenario for years, I really appreciate the clarity and insight Groopman brings to this discussion, and am looking forward to reading the whole book. (Plus, it makes me feel a little less crazy after all those years of answers that didn’t match my problems and a little more understanding of the physicians behind those diagnoses.)

3. There are days when I seriously question what I do and how long I can do it. There are also those wonderful, uplifting, soul-buttressing days, though, when I have no need to question. I have some amazing students. Thoughtful, inquisitive, and intellectual students whose projects and interests truly excite me, whose questions about science and public health and society make me want to read more and whose research reassures me just a bit about the future of our country’s health care system.*

4. Three people in my personal life are pregnant right now; two just made the announcement recently. Wonderful, exciting news, the kind of news you need when it’s cold and miserable out and you just want spring to start, when you just need to reminded that everything is a cycle and there is always the chance to start anew, when you can feel yourself getting happier just by virtue of their happiness reaching out to you. **

5. I had an amazing conversation with an incredibly wise and insightful CF patient the other night, one that left me with so many questions and so many things to think about. It was the kind of talk that left me humming with energy, my mind going in so many different directions. ***


*Sometimes I still question the choices I’ve made. Just when I think I’ve set up a schedule that is conducive to my health and my writing, I am plagued with doubt. Am I being lazy? Wouldn’t things like medical bills be so much easier to stomach if I took on more classes? In theory I am making an investment in the future by proceeding this way now, but that lag between theory and practice can be difficult sometimes.

**Apparently this spate of fertility has prompted well-meaning people to approach my mother and ask when we’re going to have kids. Not surprising, since people have been asking us that since we were engaged, but since that’s a complicated question with an even more complicated answer, this unsettles me. Right now there isn’t much to say about it, and I find myself not wanting to discuss what is there to discuss. I suppose I just wish the good news—the pregnancies—could remain all about the pregnancies and the people involved in them. I mean, I know it's human nature and an inevitable (and innocent) question, but I'd rather just focus on the three babies, not what anyone else may or may not be doing in the near future.

***At one point, I was asked “Do you know anyone like you?” I answered that no, I didn’t personally know anyone with PCD but that in the past couple years, I’d found groups online. I read from time to time, but rarely post. This segued into a really interesting discussion about the nature of community at different points in illness—for example, how if you’ve been sick all your life you might not need the same community you did as a child but if you’re sick for the first time as an adult, you might really need to seek out people with the same condition. I said that no doubt it would be valuable to know someone with PCD face to face, but that I know enough people with significant illnesses that I can extrapolate what I need to. Since I’ve never known anyone like me (except my parents, to an extent), this hasn’t bothered me.

I got home that night still thinking about community. In my inbox was an e-mail saying someone from the PCD Web group had died at 42. It was not anyone whose posts I had ever read, but I felt really down. It hit me that with community comes the burden of reality.

A Healthy Narrative

In Illness and Culture in the Postmodern Age, David B. Morris highlights this distinction between disease and illness: “The power to make us sick or well inheres not only in microbes or medications but in images and stories…the main assumption underlying the distinction between between disease and illness is that knowledge falls into two broad categories, objective and subjective” (36-37).

While many things within this quote (and, in fact, his entire book) interest me, for the sake of this particular entry, I’m intrigued the idea of stories and their relation to this division of knowledge into subjective and objective…basically, I am interested in the role of the narrator and storyteller.

As a patient, the role of storyteller is so important. We bring our subjective experiences with illness—the actual process of living with conditions—to our doctors, who hope to match up what we tell them with a different type of knowledge, science. So the details we choose to disclose, how we disclose them, and the narrative we establish about our illnesses often shape our diagnostic journeys. Certainly there are countless tests out there whose results can confirm, refute, or re-cast our stories, but what we describe to our physicians sets the whole process in motion. If I say I generally have pain and fatigue or I say I have pain in my trunk accompanied by muscle weakness and tenderness that worsens after exertion, then I am giving my doctor two different avenues to explore that might share some similarities but can lead to very different destinations.

So what does it means to be the storyteller? It should be pretty easy, right? But that’s not always the case. I know from firsthand experience that assumptions, fears, and self-consciousness can really affect what I say and how I say it: I don’t want to sound like a complainer if I list too many symptoms, I don’t want to seem like I’m making a big deal out of nothing, I don’t want to deal with more tests so I might not mention certain problems I’ve noticed. In addition, despite my best intentions and the short lists I’ve made in preparation, sometimes I get so wrapped up in a particular conversation with a doctor that I forget to touch on other details…we’re threading a different narrative line and I’m unable to shift its focus.

My incomplete narrative may be authentic to my subjective experience in many places, but it is not whole. But can it ever be?

As a writer, the role of the narrator and storyteller is inherent in every step of the writing process. In order to create atmosphere, emotion, or a factually accurate account that is concise enough, we’re constantly choosing certain details and facts over others: what does my reader need to know about the background of a situation to understand a current dilemma? If I’m trying to illustrate a particular aspect of a relationship or make a specific point, what other information about the dynamic do I need to cover? If I’m writing about a scene where something good happens, is it disingenuous to leave out negative moments that were also part of the back story if they interfere with the true (but incomplete) moment I am describing?

And of course this process is filled with the same types of obstacles that occur when we’re asked to be narrators of our illnesses: how do I come across to my reader? Does the situation I have described make sense or does the reader need more information? Will I hurt or offend anyone I have portrayed? Will anyone care about what I have to say? I am the one deciding which facts to include, so even if my finished product yields a cohesive storyline, I know it might not be a complete one.

This tension is not unique to the position of patient or writer, but since I exist within both modes, it’s interesting to look at how they intersect. I think there will always be that push and pull between the subjective (our experiences) and the objective (science, facts, historical record), but that’s what makes both medicine and writing so dynamic.

An Addendum to "Why I'm Not a Numbers Girl"

You may remember that I don’t typically care much for numbers—how they can define us, how they can limit us, how I can’t escape them even when I wish I could. (Here’s the post all about that.)

I humbly submit an addendum to “Why I’m Not a Numbers Girl.” Don’t get me wrong, in most instances, I still feel that percents and ratios and variables and risk assessments too often fail to quantify what’s most important. I still don’t like that as patients, too often we’re reduced down to a list of stats and numbers (vitals, meds, dosages, surgeries, lab results).

But I recently (re) discovered that sometimes, numbers can actually better our understanding of ourselves. Not exactly earth-shattering news, I realize, and certainly all you diabetics who test blood sugar daily or patients who monitor blood pressure and other routine activities like that must be rolling your eyes at the obviousness of that statement, but it’s an important realization for me.

When I was acutely ill (in and out of the hospital for weeks at a time), the doctors trying to figure out what was wrong with me asked me to keep track of my peak flow meter readings. For those of you blessed with hearty lungs, a peak flow meter is basically a tube you breathe into that measures how much you can exhale. The lower the number, the more constricted your airways, so peak flows are a good way to predict respiratory trouble. I stuck with it for several weeks, filling in the little boxes in a notebook a doctor gave me…and then I went into the ICU again and everything got thrown upside down. When I came out of this hospital, I had a new team of doctors and a million other new things to consider and somewhere along the way, my little notebook disappeared.

And then last week, in the midst of spring cleaning my medications (so long, empty pill bottles! See you later, empty inhaler canisters!) I stumbled across my humble little peak flow meter. A desire for more order and predictability in my life coupled with an increasing interest in Microsoft Excel prompted me to re-instate the daily peak flow charting, this time with nifty little grids and columns.

The result? I’ve noticed a pattern: the days where my morning readings are especially low (they are never spectacular, even on my best days) correlate with the days where I wheeze more, cough more, and in general experience more fatigue. The days where my early morning readings are higher? I am able to go to the gym, I don’t spend half the day coughing, and I can get a lot more done.

Duh. I know you’re thinking it. I am, too. Somehow charting peak flows just slipped to the bottom of my priority list, far below all the other more time-consuming things I do to maintain my health. No, knowing my peak flow readings will not prevent my bad days altogether, but it will help me prepare for them and predict them. I understand my body and my symptoms so much better once I stopped long enough to pay attention to my internal warning signs.