Category Archives: Writing

Autobiography of a Face (and November Carnival Ready)

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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).

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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…

Triage (And, A Space to Breathe)

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Because recent sad events have reached their inevitable end, some respite from the emotional intensity:

“I keep remembering one of my Guru’s teachings about happiness. She says that people universally tend to think that happiness is a stroke of luck, something that will maybe descend upon you like fine weather if you’re fortunate. But that’s not how happiness works. Happiness is the consequence of personal effort. You fight for it, strive for it, insist upon it, and sometimes even travel around the world looking for it. You have to participate relentlessly in the manifestations of your own blessings… It’s easy to pray when you’re in distress but continuing to pray even when your crisis has passed is like a sealing process, helping your soul hold tight to its good attainments.” (260)

(Pause here, and apply to your own life circumstances if you are so inclined.)

The preceding quote is taken from Elizabeth Gilbert’s Eat, Pray, Love. I’m sure you’ve heard of it—according to Oprah, every woman around is reading it. Of course that’s exactly why I approached it with a bit of skepticism—surely we’ve read enough tales of down-and-out Americans traveling to exotic places and uncovering the basic truths of life that set them free from their miseries?—but I really enjoyed the book. There’s a lot to be said for figuring out how to be a whole self before you try to be someone else’s.

Abigail Thomas’s A Three Dog Life, which recounts the life she built after her husband suffered traumatic brain injury, is easily one of the most luminous, compelling memoirs I’ve read. One of its reviewers said something along the lines of it’s impossible to select quotes for it because the entire book is quotable, and I agree with that assessment. Today, however, this particular passage really resonated with me:

I thought I had accepted Rich’s accident, even though I kept putting myself in a place where it hadn’t happened yet … I thought that not accepting meant turning my face to the wall, unable to function. So now today I look up the word acceptance and the definition is “to receive gladly” and that doesn’t sound right. I flip to the back, and look up its earliest root, “to grasp,” and discover this comes from the old English for “a thread used in weaving” and bingo, that’s it. You can’t keep pulling out the thread. You have to weave it in and then you have to go on weaving.” (121-122)

(Pause here, and apply to your own life circumstances if you are so inclined. Call someone you love. Tell them that.)

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For a unit on professional writing, my students and I have been talking a lot about the concept of triaging and how it relates to health information: If you are asking readers for their time and attention, provide them with something that contains substance. Write with clarity and purpose. Prioritize your information, placing emphasis on the most important facts and streamlining the least essential.

The questions and assertions we’ve discussed are also applicable to blogging, at once a profoundly personal and widely proliferating public genre, and they are things I think about a lot: where to draw the line between being authentic (so important) and lingering in the mundane minutiae of daily life (so overdone); how to balance the privacy of others with the human need to tell a story; how to infuse humor and levity in writing without sacrificing seriousness or scholarship.

I don’t have the answers nailed down, and I know I am not always successful in my attempts to uphold these standards. But in the back of my mind remains the advice an editor once gave me, advice that applies to all kinds of writing and advice I turn to often:

If you do not have something insightful or universal for the reader to take away from your work, then try harder. You can be specific, you can be particular, but always strive to produce something greater than your singular story.

Is there anything more universal and at the same time more intensely personal than grief?

A Question of Balance

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“So what are your thoughts on alternative medicine?”

I was out to lunch recently when someone at my table who knew my medical history asked me that. I paused, trying to formulate an answer that was both honest and authentic as well as diplomatic enough to appeal to both sides of the issue since I wasn’t sure of his sensibilities—what surprised me was that my honest answer did that on its own.

“Well, here’s the thing. I wouldn’t be alive today without the help of Western [conventional] medicine, there’s no disputing that. But I’ve used acupuncture in the past for pain and fatigue and had great results, and it’s done wonders for my mother in terms of her shoulder and back pain,” I said.

I told him I knew people who swore by therapeutic massage and other alternative practices, especially for chronic pain and inflammation. Both my parents, recipients of the most cutting edge care in areas like cardiology, rheumatology, and oncology—my father is a walking advertisement for minimally invasive interventional cardiology—also book weekly appointments with an acupuncturist and rave about him.

“I guess what I’m saying is that a combination of both is ideal in my mind. I believe there are limits and drawbacks to conventional medicine, and I believe there are strengths and benefits to alternative medicine that patients should explore. It’s about balance, really,” I said.

For the past few weeks, I’ve been thinking a lot about that conversation and about this notion of balance. It’s only been in recent years that I’ve achieved anything close to balance in my life, having preferred for most of my life to try and do things in spite of my illnesses, rather than in consideration of them.

“Balance” is a loaded term when it comes to chronic illness: balancing the good days with the bad, the acute flares with the low-level hum, the doctors’ appointments with social obligations, the frustration with optimism, the desire to move forward with the awareness that you need to pull back, the momentum of inclusion with the stagnation of isolation. These are the “big ticket” themes, the ones that are at once the most popular to discuss and explore and the ones most difficult to sustain.

And yet there are all the little acts of everyday living, the choices and decisions we’re not even always conscious we’re making anymore that also speak to this notion of balance. I take several medications every day, as I have since I was born and as I will for the rest of my life. I appreciate how these chemicals help manage my conditions. But I also try to ingest things that even out the scale a bit: fresh fruits, huge amounts of greens and fresh produce, lean meats, lots of water, nothing processed, all things that are naturally good for my body. (Let’s ignore the caffeine issue for now, okay? I swear I have cut back, and I drink green tea, too!)

There are days when I do not have the lung capacity or the stamina to go to the gym, and on those days, I do yoga. I love the way it lengthens me, the way it opens up my lungs, how warm and taut my otherwise aching muscles feel. Ironically, what started as my default workout when cardio couldn’t happen has been wonderful for my dodgy lungs.

These things represent balance, but they have become so routine that I don’t stop to see them as such.

The work versus downtime ratio has always been my biggest struggle. Combine a perfectionist workaholic with the attitude of “I’m going to do it just to prove I can, that I’m not sick” and you don’t get a pretty result. I’ve made great strides; no longer do I compulsively look for additional jobs or take on too many projects, no longer do I feel that I “should” be doing more than I am or feel guilty about the choices I’ve made (most of the time, anyway.)

The past few weeks, though, there hasn’t been much balance between work and rest, between deadlines and, well, fun. Since the semester ended I have been plugging away on my book, all day, every day, seven days a week. I’ve plunged into Black Hole mode, only to emerge to attend my fellowship, send the occasional e-mail, or grab a late dinner on a Friday night with my husband—after getting kicked out of the coffee shop where we’ve both been working when it closed at 9pm.

For the most part, I love every minute of it, the intensity, the focus, the productivity. I apologize sheepishly to friends and family for my absence, and in those moments, I do feel guilty about my lack of balance. But I know it’s only a temporary thing, that in a few weeks I can turn the computer off for a bit and exhale….and I also know that for so many weeks of my life, I have surrendered everything to sickness and hospitals and chaos. Who knows, maybe this period of absorption is just another way of balancing things out…

A Healthy Narrative

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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.

Waiting to Exhale

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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.

An Outsider Finds Her Way Back In

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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.