tag:blogger.com,1999:blog-42275648755002096262024-02-20T19:52:03.208-08:00a mere threadTiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.comBlogger33125tag:blogger.com,1999:blog-4227564875500209626.post-9174232578165401192016-01-18T14:43:00.002-08:002016-01-18T14:43:29.947-08:00I've moved!Hello! Thanks for visiting my former blog. Despite my best efforts to transfer my Blogger posts to Wordpress, they remain here. Oh, well. If you'd like to read posts that are more recent, click this <b><a href="https://amerethread.wordpress.com/" target="_blank">link</a></b>.<br />
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TiffanyTiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com0tag:blogger.com,1999:blog-4227564875500209626.post-73529784611286051472014-12-26T11:09:00.001-08:002014-12-27T08:50:00.776-08:00Ch2You don't read too much about this, but it's a real thing: the difficulty of spending a holiday without your child because it's your "off" year. Talk about painful. Last year Bill and I bailed on Thanksgiving--thank you, Canada--because I couldn't bear to celebrate with friends whose children were around (as much as I love the friends and the children), or to answer the inevitable and, frankly, incredibly stupid question, "Where's Vivian?" (Hint: She's not studying abroad.) My "on" years are only slightly better. Yes, I am with my child, but as I enjoy, say, watching her hunt for Easter eggs, I think of Alex, alone in his apartment, and I feel very sad. It doesn't matter that at that very moment Alex may be watching football or taking a nap--you know, living the Sunday dream. Emotional turmoil does not respond to reason.<br />
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As Christmas approached this year, I was very much aware that Vivian would spend Christmas Eve, and so also Christmas morning, with her dad, which is to say, without me. The last time I had to make it through a Christmas morning without Vivian--in 2012--I determined to keep myself occupied and thinking positively because the alternative was to dissolve into a pool of self-loathing and self-pity, not to mention to put a serious damper on Bill's Christmas morning. I read the <i>New York Times</i>. I "liked" friends' Facebook photos of present openings and tired faces. When my brother sent me a video of his son reacting to the big reveal (<i>Santa!!!!</i>), I delighted, damn it, in my nephew's excitement and refused to have A Big Cry over having missed that moment with my own kid. I was not practicing an attitude of gratitude, thank you very much, but rejecting the idea that to miss Christmas morning is to lose something irretrievable.<br />
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That's <i>avant</i>, people. It takes will to refuse what biology and culture have conditioned you to embrace, to shape a thing to fit your condition rather than to despair that your condition doesn't fit the thing. And I have never been <i>avant</i>.<br />
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Even so, I was at it again this Christmas morning. Vivian was at her dad's--had been since the night before--and I had five hours to fill before picking her up, and not just fill but really enjoy. I did some of the usual (coffee, <i>New York Times</i>, Facebook, cross stitch) and ate a really delicious eggs Benedict, courtesy of Bill. That man makes a mean hollandaise, nice and lemony. And then I really got going.<br />
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You may not know this, but we have mice. They are pretend mice, formed with our hands, and they are named Mouse, Sister Mouse, Uncle Lester, and Clive. Clive is a British cousin. Mouse lives in my hand; Sister lives with Vivi; and Bill does the voices of both Uncle Lester and Clive, which is not easy given the change in accents those guys require. Lester and Mouse sound like they grew up in 1930s Brooklyn, and Sister Mouse, well, Vivian does her voice, so let's just say it's high-pitched and grating. The mice trace their origin to Beverly Cleary's <i>The Mouse and the Motorcycle</i>, which Bill read to Vivi about 3 years ago. He chose the New York accent for the voice of the character Uncle Lester and unwittingly started something we have no idea how to stop.<br />
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Sister Mouse is a real goody-goody. She always does the right thing. Clive attends Oxford, so we call upon him mainly to resolve disputes and to fill in bits of history. Mouse and Uncle Lester provide the real entertainment. They are too much--adversarial and misbehaving and always on the make. Uncle Lester spends a lot of time at the Emerald Queen, the local tribal casino where his girlfriend Sherrie, a giraffe, works as a dancer (<i>She has a very graceful neck</i>) and he does business with his "associates" (<i>You know why they call him Vinnie the Onion? He'll make you <u>cry</u>. Heh heh</i>). Mouse regards Vivian as her best friend and is incensed by the amount of time Vivi spends at school. She spends the morning drive hatching plans to "spring" Vivian that day (<i>I'm gonna dig a tunnel from your house to the school, jump in your teacher's face to cause a distraction, and then you run, Vivian. You RUN!</i>). Vivian always says, "No, Mouse. I like school. I don't want to be sprung," and so Mouse is left to find other ways to fill her days. Generally, she bathes herself and does chores, but she also enjoys scaring my students, and she's been working on a musical off and on for years.<br />
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During this year's Christmas season Mouse became an entrepreneur. She concocted a recipe for a candy called Ch2--that's "Ch squared," <u>ch</u>ocolate-covered <u>ch</u>eese. Intent upon putting a piece of Ch2 in the stocking of every child in Tacoma, she opened, in our walls, a factory operated by a thousand mice. The factory ran day and night in the weeks leading up to Christmas, in spite of some real opposition from Bill and Vivian, who found aspects of the idea to be repulsive. <i>But the mice melt the chocolate nice and slow, in their cheeks! </i>cried Mouse. <i>They knead the cheese lovingly with their little paws!</i> Still no takers. There were concerns about health codes, mouse hair, and the suitability of pairing chocolate with cheese. Mouse continued, undeterred.<br />
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The mice's antics are usually limited to our imaginations--we spent a good year hearing about but never actualizing Uncle Lester's vision of a Magic Mouse Bus (<i>Powered by a thousand mice and filled with a hundred children! What could go wrong?</i>). I could not let Ch2 meet the same fate. So on Christmas morning, after the <i>Times</i> and the Benedict and a hot shower, I got cooking.<br />
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I used my Williams-Sonoma poaching pan (TM) to melt a handful of chocolate chips and a bit of shortening.<br />
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I cut the cheddar cheese into cubes.<br />
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And then I dipped cubes of cheese into chocolate. In all of history has this ever been done? They say there are no new ideas, but I don't know. Miraculously, the cheese did not melt. Greater miracle: the chocolate-covered cheese looked delicious.<br />
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<b>Food porn, am I right?</b></div>
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Behold! Ch2!<br />
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Are you wondering how it tasted? Trying <i>not</i> to wonder, perhaps? See the child:<br />
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<b>Focused, or possibly dissociative </b></div>
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<b>Sickened, but by the taste or merely the idea?</b></div>
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<b>Delighted! </b></div>
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That's right. <i>Mouse </i>was right. Ch2 is a winner or, if not a winner, at least not a loser. Ch2 may not make Mouse a millionaire, but it is EDIBLE.<br />
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And it made my <u>Ch</u>ristmas morning. Ch cubed.<br />
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<br />Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com0tag:blogger.com,1999:blog-4227564875500209626.post-37606710984584037652014-11-15T09:03:00.002-08:002014-11-15T12:52:47.045-08:00The Chill of NovemberThis has been a bear of a month. But what kind of bear? I'm thinking polar bear with a bloody snout. Polar bears make for cute stuffed animals, but they are wild creatures who, if they stumbled upon you on a snowy tundra, would have no qualms about eating you. All the better if you are fishy.<br />
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I realize that gratitude is big these days, but I can't jump straight to it. Even when I do embrace gratitude, it is always tinged with guilt and despair. For example: it's been very cold here lately, and the other night in bed I said a silent prayer of gratitude for my warm house. Immediately after that I thought of all the people who do not have a warm house, who do not have a house or a shelter at all, and how I haven't helped them, and then I thought about the gross inequities in our culture, and it was either take two antihistamines or not sleep that night.<br />
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I have stopped writing my daily letters. I think I've not written for as many days as I did write, which is somewhere around two-and-a-half months. This week, though, I received two replies, and that gave me heart to take up the letter-writing again. Here is why I had stopped: 1) I began to feel that I was burdening people with my letters; they would tell me that they'd been carrying around my letter for a while, waiting for the chance to reply or else looking for a stamp. The world has gotten away from writing letters--really, it doesn't accommodate the practice; 2) I was getting sick of myself. When you write for days in a row, you either repeat a lot of stuff or else realize that change is so incremental or so inconsequential as to make you kind of depressed; 3) my job swept me up, as it tends to do; when I did have time to write, I couldn't focus or I didn't want to do anything involving words or meaning. Moreover, I stopped keeping track of whom I'd written to and who had written me back because about four weeks into every semester my organization goes to the bears; as a result, I have left several friends hanging, and that makes me feel bad; 4) likewise, it makes for a lonely feeling to send out letter after letter and only get a few responses. I realized that when letter-writing was a thing, people wrote back or else lost touch entirely. Funny, isn't it, how Facebook can make a person feel worse than they already do, yet it's the go-to mode of communication for so many of us.<br />
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I'd like to start up the letter-writing again. As I think I've mentioned before, it was meditative for me to go within and to write with a pen(cil) on paper for 15 or 20 minutes each day. It was also such a pleasure to receive and read the responses that people sent--and people did respond--that I want that feeling back. Here's the big thing, though, the reason that I think we all might want to write more letters: people wrote to me differently than they do when they communicate electronically and instantly. They told me things about themselves, their states of mind, their families, that they ordinarily don't. One day while I was still in the hospital with Vivian, I received something like ten letters. At least half of them expressed some question or problem or intention that meant something to the writer, and, of course, when we encounter something that is meaningful to a friend, we reflect upon it, too, and the meaning grows. <br />
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So...expect to receive a letter from me soon.<br />
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Other things that have weighed on me this month, not ranked according to consequence:<br />
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<ul>
<li>The Gottmans. God, what is it with those people and their constant reminders about what makes for a successful marriage? It all comes down to bids. Did Alex and I fail to respond to each other's bids? Do Bill and I? Currently I'm not speaking to Bill, so chances are good that I am unreceptive.</li>
<li>A colleague interrupted a meeting to point out a typo I'd made on an agenda. </li>
<li>People laughed at something I said at a faculty meeting, only I didn't intend for it to be funny.</li>
<li>A colleague wrote to me in anger because I had required committee members to print a long document, which is wasteful--this when I hadn't intentionally required such a thing at all, and I happen to live with a man who is obsessed with waste and so am well aware of the consequences of mindless consumption.</li>
<li>I seem to have been utterly unable to hide from Vivian the anxiety that wreaks havoc on me every day. Will she grow up to despise this trait of mine, primarily because I've taught her how to be anxious, imposed it upon her?</li>
<li>Alex seems depressed again.</li>
<li>Bill is stretched too thin.</li>
<li>I haven't published enough, and I'm up for review in a month.</li>
<li>My face is both familiar and unfamiliar to me, as it has always been. How can this be, given that my face used to look quite a bit different? Mainly I don't care about the effects of aging, and I've taken to wearing very little makeup--liberating--but sometimes I realize that I will be an older woman whom people might refer to as "handsome," and that falls a bit short of what I had wanted. You do not have to talk me out of this. </li>
<li>There are six doctor's appointments I have to make--three for Vivian and three for me--and I can't manage to make them.</li>
<li>I have two pairs of shoes and one shirt to return, only I keep forgetting to print out the return labels. </li>
<li>Football.</li>
<li>At some point I will get a call from the hospital telling me when Vivian's next surgery will be. I worry that she will be very scared. I know I will be.</li>
<li>The scars on Vivian's back. Eventually there will be many of them, thin lines running parallel. Will they hurt? What beautiful thing will they look like: the trace of a rake upon soil? tributaries of a meandering river? My hope: one day someone she loves and who loves her will run his or her hand along those lines.</li>
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So that's me on this Saturday in mid-November. How are you? I hear that my comments work only for some people, and I have no idea why. Before I post this, I will remove the restrictions from the comments in case that works, because I like to hear from you.</div>
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I don't want to end on a blue note, so I will add that I completed a cross-stitch project this week and am close to finishing another. I will post pictures when I'm done with the "finishing" part, which involves sewing and framing. </div>
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Also: it's sunny and cold here in the Pacific Northwest. I will walk Milo later to clear my head, and I will talk to Bill.</div>
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<br />Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com12tag:blogger.com,1999:blog-4227564875500209626.post-22460506143823407942014-11-01T07:59:00.001-07:002014-11-01T08:00:24.863-07:00A Haunting<div class="MsoNormal">
Beyond the golden years of trick-or-treating, Halloween morphs
into a high-pressure holiday, like New Year’s Eve or the 4<sup>th</sup> of
July, when you feel like you must have plans or else endure a long night of loneliness
and self-loathing, a night pierced by the cackling laughter of fun-havers
outside your window, a night most unhallowed. If you happen to have plans, your
suffering is of another sort: weeks in advance of the party, you have to figure
out what you’re going to “be.” And then you must buy and assemble components of
a costume, and then you have to wear it all.</div>
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<o:p></o:p></div>
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<div class="MsoNormal">
Having a child relieved me of that burden: the moment I
dressed my infant as a pea pod the focus shifted to her, and because of my
ever-advancing age, thank god, I will never attract such attention again unless
some darkly or too brightly humored person one day dresses <i style="mso-bidi-font-style: normal;">me </i>as a pea pod, and by then I will be too far gone to know or care.<o:p></o:p></div>
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<div class="MsoNormal">
I suspect that people who like Halloween are drawn to the
lure of the carnivalesque. They want to be someone else for a night, to flout
the rules of society and self without reprisal. There’s chaos to that behavior;
there’s chance and misrule. No wonder I don’t like it. I’ve had enough trouble
without borrowing more. <o:p></o:p></div>
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Even so, I have tried. I have been game. In college, I
convinced my roommate to don a blue blazer and black fedora and to pencil in a
thin mustache so that she could be pimp to my prostitute. (Our friend, whose
feminism surpassed our own at that time, dressed in black and held a sign condemning
our costumes. She stayed by our sides all night.) A year after, having taken a
Women’s Studies class and watched a few hours of CSPAN, I borrowed from my
mother a satiny Coke can costume and affixed to the top of it a black squiggle
of yarn: it was a pubic hair, condemning Clarence Thomas and supporting Anita
Hill. <span style="mso-spacerun: yes;"> </span>And then there were the years of
the blond wig. I wore it with prison duds and carried a muffin pan: Martha
Stewart. I paired it with press-on nails and tight jeans: Carmela Soprano. For
its swan song, the blond wig transformed me into Britney Spears. She and I,
pregnant at the same time, were a page out of <i style="mso-bidi-font-style: normal;">US Weekly</i>, “Who Wore It Best?”: sunglasses, pink sweats, shirts
that bared midriffs 6-months-swelled, and, in our hands, packs of Kools, venti
coffees, and babies not wholly attended to—mine a doll, hers, her son Sean. <o:p></o:p></div>
<div class="MsoNormal">
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<div class="MsoNormal">
Three months after that last Halloween, Britney shaved her
head, apparently in the midst of a crackup or maybe to hide traces of drugs in
her hair so she wouldn’t lose her boys. I was in a hospital room with my infant
daughter. She had been born with something wrong, a defect, you could say,
although I do not use that word. We had learned about her problem, her father
and I, on Halloween, two days after the costume party. “There is no stomach,”
the ultrasound technician had said. “Maybe she hasn’t eaten recently. You can’t
see the stomach unless there’s something in it. Or maybe it’s still small.” In
time we were to learn that our daughter’s esophagus was divided in two. She
would be born in Seattle so that we’d have easy access to a Neonatal Intensive
Care Unit, or NICU, and then she’d be moved to Children’s Hospital, where we
would live, she and I, until the ends of her esophagus grew close enough
together for the surgeons to finish the work that nature had abandoned. This
stay would extend for months and then, after a surgical complication that
nearly ended her life, months more, a great lonely and frightening swath of
time that would cauterize the split between my past self and who I am now.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Who needs Halloween? Every day—I do not exaggerate—I live
with fear; I give some thought to my child’s life, to her being alive. In the
mornings, <i>Thank God she has woken up</i>;
when I drop her off at school, <i>Please let
her survive this day, let no madman enter this place and kill her</i>; when I
put her to bed at night, <i>Is her window
locked? Is my door open so that I can hear her call out?</i> I know why this
is. It’s because once, I left her in a hospital room while I went to have a
shower, and while I was gone she almost died. A nurse was there; my mother was
there; but even so, an intravenous line had burst my child’s superior vena cava
and filled her chest cavity and scarred her lungs with poison. Her lower organs
had shut down because her blood could not reach them. Her head had swelled
because where could the blood go? She lay there, only three months old, dying.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
In a way, I saved her. When I saw how she looked—her head
too large, a line running across her chest, above it dark red, below it yellow—I
ran from the room, searching for the head of the NICU. I found him amidst a
bunch of physicians, leading morning rounds, and I interrupted to say, “Dr. Brogan,
something is wrong.” Why should he have listened to me? I am an English
professor, not a doctor. He <i style="mso-bidi-font-style: normal;">is </i>a
doctor, and was busy. And already a nurse and a surgical resident had
downplayed my concern. But during my week in Intensive Care, he and I had
gotten to know each other, had bonded over literature, in fact. (Before med
school Dr. Brogan had been an English major: never let it be said that ours is
a useless degree.) So he had reason to trust me, and he dropped what he was
doing and followed me. They all did. He told me later that the expression on my
face had been enough to convince him to come. I looked like I had seen a ghost.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Emily Dickinson wrote, “One need not be a Chamber – to be
Haunted – One need not be a House.” “The Brain has Corridors” more suitable to
ghosts; “Ourself behind ourself, concealed – Should startle most.” I am haunted by the events of that morning. I
wish they would let me be. In that moment, I was awake, definitive, intent. I acted.
Doctors and nurses and technicians acted. My child lived. But it left me with
the knowledge that such things can happen: a mother can go to have a shower
and, because she hasn’t done so all week, take a few extra minutes to apply her
makeup, and when she returns, her child might be changed, her child might even
be gone. That mother—myself behind myself, concealed—lives in my brain. She doesn’t
startle me much anymore; I’m used to her rattling around, and I’m learning to
limit her circuit. But there she is, and there she’ll stay, watching my
daughter and waiting, waiting, waking me from my sleep, ever watchful and
waiting still. </div>
<div class="MsoNormal">
<o:p></o:p></div>
Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com0tag:blogger.com,1999:blog-4227564875500209626.post-79365935975785180402014-10-25T12:56:00.001-07:002014-10-25T13:58:50.534-07:00These Memories We SewI never really learned how to sew. Sure, I've taken some classes, and I know the basics of using a machine: I can thread a very ugly bobbin and sew a straight line. But start talking to me about selvage and darts and "the bias," and I get a stress pain in my right shoulder blade. It's there now, and I'm just writing about this stuff.<br />
<div>
<br /></div>
<div>
My mom, on the other hand, can sew really well. Once, when I was sixteen, I availed myself of her expertise and asked her for a lesson. But with my mom it's all pre-washing and pressing of fabric, cutting out a pattern, pinning, more cutting. The sewing takes an eternity to get to! Teenage me couldn't stand the wait. The session ended badly, with me giving up and my mom probably feeling mystified by a daughter who seemed to share none of her respect for mathematical precision. </div>
<div>
<br /></div>
<div>
I would try today to learn to sew from my mom, but guess what: it would end badly all over again. I still can't stand the preparatory work, and the math of it all makes me seize up in fear. </div>
<div>
<br />
Enter this little fairy:<br />
<br /></div>
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<br />
She's such a good kid, and when I happened to ask her what she wanted to be for Halloween at precisely the moment that a 10th-grade girl walked by us, all purple velvet and misunderstood in a goth-Wiccan hooded cape, and Vivian, enchanted, said, "I want to be Little Red Riding Hood," what else could I reply but, "Great! Would you like me to sew your costume?"</div>
<div>
<br />
Thus committed, I found a free pattern at a site with the encouraging name of <b><a href="http://www.fleecefun.com/red-riding-hood-cape-pattern.html" target="_blank">Fleece Fun</a></b>. I am grateful to the woman whose site it is for sharing her work without charge and for walking newbies like me through each stage of the process, even if her tag-line, "Velvet is pretentious, but fleece is fun!" strikes a blow to Vivi's goth-Wiccan muse.<br />
<br />
Last weekend I <strike>forced</strike> invited Vivian to accompany me to JoAnn Fabrics to find red fleece and to choose a color for the lining and ribbon. Being in that store and waiting for our number to be called transported me back to childhood. How many times had I waited in just such a store with my own mother as she sorted through McCall's catalogs? I had to share the experience with her:<br />
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<br />
Spirits were running high--in a good way. Energized, I assembled the pattern and laid it out on the coffee table. I shared a photo on Facebook of my domestic tableau. I shared, too, Vivian's prediction that I would utterly lose my shit before completing this project. "It's just who you are, Mama," she said.<br />
<br />
This morning, a week later, I was back at it. At 7:00 a.m. I cut out the pattern and pinned it to the fabric.<br />
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<br />
See that purple and white thing in the background that looks like a brain? That's a finger labyrinth, one of the first things I cross-stitched when I took up the hobby, and, to date, the only thing I've cross-stitched for Vivian. You use finger labyrinths to calm you down when you're feeling stressed: you run your index finger back and forth through the maze, and when you're done, you've found peace. Standing by her prediction, Vivian handed this thing over to me a couple of days ago.<br />
<br />
The pinning done, I began to cut. And now I treat you to the most boring 38 seconds of video on the Internet. You hear that sound? Not the high-pitched <i>snip, snip</i> but the lower sound of the blades cutting through fabric? That is a predominant sound of my early years. Takes me back to Saturdays a lot like this one.<br />
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<br />
Revery over, I stuck myself with a pin.<br />
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<br />
I don't want to make you pass out or anything, but that is real blood. Fortunately, I had some scraps of fleece around, so I was able to fashion a tourniquet out of those and a wooden spoon. I forged ahead.<br />
<br />
I dusted off my sewing machine--nothing a little elbow grease can't handle--and threaded a bobbin and threaded the machine, too. I pinned pieces of fabric together according to the directions of my online guru, and I forgave myself for having pinned them facing the wrong direction and on the underside of my work. It was time to sew.<br />
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<br />
The hood was first and, no wuss, I opted to add lining in a contrasting color<i> and fabric</i>. Lodged deep within my cellular memory was the knowledge that stretch cotton is difficult to work with. It stretches! It might even slide. Good god, should I have cut it on the bias? Who knows. Ignoring the searing pain in my right shoulder, I continued. I even changed from red to blue thread while stitching the lining. Mom, I know you're not watching, but I feel like you are.<br />
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<br />
Note the pin placement: correct side, correct direction. I am getting this, people! Before I knew it--honestly, I think I blacked out for a bit--I had sewn a hood, a lined hood! I texted my mom.<br />
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As you can see, she was impressed. Then, because Bill was asleep, Vivian was at Alex's, and I was unshowered, I ran around the house looking for a model for my hood. I found a willing participant in this little lady right here:<br />
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<br />
<br />
I felt unstoppable. I had completed the most difficult part of the project, and it was only 9 a.m. Remember that old Army commercial, "We do more before 9 a.m. than most people do all day?" Yes. I was an Army of One. I tightened the laces on my boots and <i>for-ward HARCHed</i>.<br />
<br />
But wait! What's this?<br />
<br />
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<br />
I quite literally hit a snag. To repair this problem I had to go behind the bobbin holder doohickey and figure out how to raise the little treads that move your fabric along. How on earth did they fall down to begin with? It took a good ten minutes to puzzle through this situation, and in that time I moved<i> </i>so swiftly from Richard Gere in <i>An Officer and a Gentleman</i>--"I ain't gonna quit! I ain't gonna quit!"--to Jesse Pinkman in <i>Breaking Bad</i>--"How do you <i>work</i>, BITCH?!"--that I surprised even me. <br />
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Having adjusted the doohickey and achieved inner peace, I assembled the rest of the riding hood: cape, shoulders, and, finally, ribbon.<br />
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And that was it. Behold: a little red riding hood!<br />
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<br />
I've never asked my mom what it was like for her to sew costumes and clothes for my brother and me when we were young. She raised us on her own and worked full-time, so she would do her sewing at night. She'd stay up until 2 or 3 a.m., with old movies playing on channel 5 and her sewing machine whirring on the kitchen table. There'd be cigarette smoke and the steam of an iron. There'd be cold coffee--light, no sugar--in a cup that said "MOM." I can remember being in bed and hearing the sounds of her sewing downstairs, but mainly my brother and I would sleep through it; we'd wake in the morning to find her creations hanging from a drawer pull or a cabinet door. She'd be hard to rouse.<br />
<br />
She had to have been so tired, but I think she also loved that work: the pressing, the cutting, the allowance of 1/2 an inch for every seam. I can see the appeal.<br />
<br />
Hey, look! She just wrote me back:<br />
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<br />
Thanks, Mom.<br />
<br />
<br /></div>
Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com0tag:blogger.com,1999:blog-4227564875500209626.post-67547120161568700162014-10-11T11:39:00.000-07:002014-10-11T12:01:12.977-07:00I've got your arm.<div class="separator" style="clear: both; text-align: center;">
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I work in a building next to the football practice field, and I've been looking at this figure for weeks. It's a padded dummy--humanoid--presumably for young men to run at and crash into as they make guttural sounds. But why would you want to crash into such a thing? Look at its form: crouched over, protecting itself, bracing itself, and made smaller for having to do so. It's a figure to inspire compassion, not aggression. I want a young man to stop mid-charge, approach gently, and put an arm around this guy, maybe even hug him. I want all the other players to do the same and then to walk off the field. That idea is not so ridiculous as it is to complain about violence in a society and then to celebrate a sport that requires men to punish, rather than embrace, vulnerability.<br />
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Yesterday the great Jami Geyer Cayo gave me a massage, and we talked about vulnerability, how crucial it is to getting any work done in her business and in mine and probably in yours. She can't release and realign a muscle, like my Serratus--isn't that a beautiful name?--if I don't let go, let my arm go limp and breathe through the pain because I trust that she won't injure me, that she will, in fact, support me. As we did this work together, I told her that this week four of my students spoke to me about how the reading had touched upon their own experiences, how it had made them see something or understand something or, in one case, remember something important to them. You might think that that kind of thing happens frequently in a literature classroom, but it doesn't, at least not to me. Students may (and probably do) relate to the material, but they rarely tell me about it. Yet in one week I had four of these moments of connection with students, moments of trust, really, theirs in me. Why four, and why this week? Jami and I concluded that I'm embracing my own vulnerability and so creating a space for them to, what? approach? connect? Something.<br />
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Where the catharsis happens</div>
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The word <i>vulnerable </i>makes me uncomfortable. It's a bit of whipping-boy (or, let's be honest, whipping-girl) in our culture: there's a woo-woo air to it and the taint of association with the feminine. And while I was growing up, my family didn't really do vulnerable because, it seems to me, vulnerability feels really, really bad if you don't have a Jami Cayo there with a firm hold on your arm when you let it go limp. But it has recently occurred to me that I was a kid who might have grown into a different kind of adult if I had been allowed and even encouraged to be vulnerable. (Note: This is not a criticism of you, Mom! I am speaking about any number of forces at play in my life and, really, anyone's life, including yours. Love you!)<br />
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So here's the thing: I glimpse my young self in Vivian. I mean, Vivian is Vivian. I understand that she is not me, and I am really into<i> </i>getting to know her as her. I like this kid very much. But in some ways she is so familiar, me but better than me. Could this be in some small part because Alex and Bill and I have allowed her to be vulnerable? Because she is, you know. There are no two ways about it. She has a thin rod attached to her spine by a few hooks and screws. She is shaping an identity out of experiences that include hospitalizations, casts, surgeries, and scars. We don't require her to be brave. Yet--or is it So?--she is brave. While we were at the hospital, I would sometimes end my day by crying in my bed or in a chair next to her bed because, my god, it hurt to allow Vivian to cry, to tell me that she didn't like being in the halo, that she didn't want to have a crooked spine, that she didn't want to look out a window at a brown valley; she wanted gray water and dark green islands, she wanted our small back yard and our pets. There were other things, too, that jarred me, like seeing her take to a walker and a wheelchair and, after the surgery, preferring them to her own two feet because walking was painful and hard; or hurting her when we turned her over in bed; or worrying about her spinal cord because during surgery they found an abnormality in how it functions. I let all of this stuff and more wash over me, into me, through me--choose a preposition!--and, yeah, it was uncomfortable. But I did it. I really did it. When a person you love says, "I am scared," do you say, "Nah. There's nothing to be scared of!" or do you say, "What scares you?" My default is the former. It sounds reassuring, but actually it's not; it says, <i>I don't want to let that in</i> or, <i>I don't think I'm strong enough to handle that</i> or, <i>If I don't acknowledge it, it's not there</i>. I'm teaching myself to respond in the other way because that's where the connection lies. Right in there, that's where Vivian will get the message that she doesn't have to be hunched up like the figure on the practice field. Let her be upright, arms out.<br />
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Let me be, too.<br />
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Funny, right, that you can read that as "Let <i>me</i> be, too" or as "Let me be," as in, leave me to myself as I am. I think I've written here that while we were in the hospital my focus narrowed. All that existed was in that small room, and Vivian was at the center of it. I became afraid to leave the hospital and, more than that, Vivian's room. I was describing this response to my friend Arianna last night, and we agreed that it is at least part-biological, like when a cat or a dog hides when it's injured or about to have pups. I noticed it happening to me, and I just let it happen. Here was self-acceptance, and isn't that a kind of trust? I also wrote letters, 37 of them, and mailed them in batches and sometimes one by one. I told people what I was experiencing, authentically, no sugar-coating that I can recall. Letters I received in response were remarkable, quite different from any email I've received. Friends told me what they were worried about or what they were working on in themselves or what they might try.<br />
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My <b><a href="http://amerethread.blogspot.com/2014/07/beyond.html" target="_blank">letter-writing</a></b> has fallen off. We came back to Tacoma on September 7th. That night at 11pm, I sat upright in bed and said, "I forgot to write my letter!" Bill said, "Why don't you give yourself a break?" I said, "No," and I turned on the light and wrote a letter...to Bill. I wrote to him for the next few days in a row, too; they are short letters, lackluster, tired. And then I remembered what he said, "Why don't you give yourself a break?" and instead of saying, "No," I said--not aloud, but you get the point--"You know what? I think I will." So I did. I have not abandoned my hand-written letter project, but it's been about a month since I've written one a day. I am going to get back to it because I want to, but I needed the break. As I wrote (by hand, in a letter) to my friend Marla, this project was never about achieving perfection. It was about honoring connection.<br />
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On that note, I want to say thank you to the many people who reached out to Vivian and me while we were in the hospital<i>.</i> My hope is that this note finds its way to you. I had illusions of thanking each person individually for the cards and gifts they sent, and I kept records like this one, scrawled on the backs of envelopes and scraps of paper: <br />
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But I have not kept track of whom I've written to and emailed and texted and called, and I worry that I will inadvertently leave someone out. Thank you. You did a good thing, a kind thing, for a girl and her family, and my hope is that many good things come to you and yours in return.<br />
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I have one last thought on this Saturday morning. Is it a non sequitur, or does it follow? The word <i>vulnerable</i>, adj., used to mean "having power to wound; wounding," but that meaning is now obsolete.<br />
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<br />Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com0tag:blogger.com,1999:blog-4227564875500209626.post-31749030006877203872014-09-21T20:20:00.002-07:002014-09-21T20:21:23.668-07:00AutumnToday was a slow day. It was the day my mom flew back to California after a 10-day stay, her third and final visit since mid-August to help take care of Vivian. Her departure makes me sad, and I also feel some relief and, mixed with that, fear, for we're at the end of our summer trial. We have seen Vivian through halo traction, surgery, and (knock wood) the hardest part of her recovery. Now what? My god, I think, can we do this by ourselves? When Vivian was a baby--my mom was here then, too, and so was my aunt, both of them for months--one of our home nurses said to me, "This is just a season." It was comforting, and I told myself the same thing before we left for Salt Lake City. "This just a season. This is just a season." And now that season is just about over, like how yesterday was summer and today is fall, only you can't feel a difference in the weather.<br />
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Vivian had a job for me to do today. I was to repair Teddy, one of two stuffed animals she's had since she was very small. (The other is Bunny. Bunny has been through a lot, including a night in the gutter outside Tacoma's El Guadalajara--who hasn't been there?--and, well, being lost to eternity aboard a Delta Airlines flight to JFK, a tragedy that inspired the ABC series "Lost" and prompted me to rush-order a replacement Bunny, dubbed Sister Bunny, from the organic-plushy makers in rural Vermont from whom our friends Alison and Cady ordered Bunny in the first place.)<br />
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Vivian took this photo of Bunny I on Valentine's Day of 2010.</div>
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This is<b> before</b> Bunny's overnight in the gutter.</div>
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Imagine the "after" shot.</div>
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Teddy's life has been more mundane. Teddy was knitted for Vivian by my brother, Matthew, who no longer knits but was once a real pro. Somewhere I have a photo of Vivian receiving Vivian on Christmas morning of 2007 or 2008, but I can't find it right now. Anyway, she received Teddy, and she loved him instantly. He and Bunny come with us wherever we go. So of course they accompanied us to Salt Lake City.<br />
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Here they are, all packed and ready to go.</div>
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In the image above, you'll notice Teddy's skin graft, but you'll be too polite to mention it. It's ok. He had a hole in his face, and my brother was too busy to repair it, so Teddy went to the only surgeon he could afford (me), and I knitted and purled a square that almost matched his fur, and I threw in a scarf for free.<br />
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Poor Teddy, though. Vivian loves him because he's so flat, and she likes to use him as a pillow. Trouble is, for four of the weeks that we were in the hospital, Vivian had pins protruding from her head.<br />
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Teddy took a beating.</div>
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This left me with the grim task of restoring Teddy to his former glory or, barring that, of making him whole again. I took it on because, well, that's what I do.<br />
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Teddy declined anesthesia, but he did bite a bullet.</div>
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Knit, purl, knit, purl, sew, sew sew...</div>
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...sew some more, sew some more...<br />
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"The crying only makes it worse, Teddy. Here, have a swig of this."<br />
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Knit, purl, knit, purl...<br />
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In the end, Teddy took the needle and thread from me and finished the job himself. That is one tough bear. Stoic, too, for the most part.<br />
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"I am not an animal!!"</div>
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So, yes, it was a quiet day, a day of transitions. Summer is behind us, autumn is ahead, and Teddy has resumed his place under Vivian's head. When you see him, he would appreciate a nod to signal your esteem but nothing more. He leaves the theatrics to Bunny.</div>
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<br />Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com0tag:blogger.com,1999:blog-4227564875500209626.post-91795236690232665492014-09-13T08:04:00.001-07:002014-09-13T08:04:26.826-07:00HomeWell, we're home. We are home. It feels good, and it feels a little strange. I'm still floating in some space between where I needed to be to get Vivian (and me) through the halo and the surgery and where I normally live. Yesterday I went to my office briefly to print something, and I ran into a few people. It was nice to see them and to chat with them, and afterward I felt exhausted and a little hollowed out. I think that's just going to be how it is for a while, and probably my stamina will return a little each day, and then there I'll be again.<br />
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When I was in my mid-20s, I became aware of my tendency (ability?) to dissociate from time to time, only I didn't immediately recognize it as dissociation. I was a little worried about it and a little intrigued by it, kind of like how you feel in a lucid dream. Over time, I went to therapy and practiced mindfulness, and I filled my life with people I actually wanted to be there, and now it rarely happens. In fact, it may never happen--I haven't noticed it for a long time. It's good to occupy one's own body. During a period of intensity, it's also wearing. Is there such a thing as hyper-association, where you focus so sharply upon what you're experiencing that the rest of the world falls away or, if it doesn't, you wish it would? This is sort of what happened to me while we were in the hospital.<br />
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So now we're home, and I'm slowly reorienting myself to the people and the details that I put on fade because I felt compelled to.<br />
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Vivian is coming back, too, and really much more quickly and ably than I am. I was very worried about flying home with her because while she could walk on her own at that point, she was very wobbly, and her movement was slow and restricted. I feared the airplane lavatory! She also hadn't sat up for more than an hour or two at a time, and that only once, so I didn't know if she'd be able to take 4-5 hours of sitting. The days immediately after surgery were very difficult. She was in pain, but even so we had to move her from time to time, and it took 2-3 people to do so, none of whom was Vivian herself. On the second day she had to walk, and it was challenging and not at all intuitive because her brain hadn't yet made sense of the new configuration of her spine and her muscles. Because of the pain and because of the pain meds, she didn't sing and she didn't laugh for several days, maybe even a week, and that was weird to experience. Most of us laugh a lot, I think, and when someone stops you notice. It's the same with the singing: my kid sings all the time--last spring her t-ball coach told us she liked to stand near Vivi in the field because she spent the whole game in song--so it was concerning when she stopped.<br />
<br />
But, really, each day she has improved markedly over the day before, and now she's walking on her own, and I think we will try to bring her to school for a few hours on a few days this week. We're still managing her pain with meds but only minimally. My hope is that she can return to school full-time after this coming week. It's also my worry because her bones haven't yet healed over the screws, and I want desperately for her not to get knocked by some kid or to trip or fall and so dislodge the rod.<br />
<br />
I return to classes this coming Monday. To begin to explain how I feel about that, allow me share this image:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh92ATc7Dbu_8DVKSeDkpJ9nP4NvHgmiOWw8saF8v59g913mYm3zun5qi6Y7zRXY1XwmpqKDNsIOYMlY34ZfPNgpUmoqCwa61tPRN3BJ0tEYDwkrPhTrcZtE5N7PZ7GfxNLocCcMHETIFw/s1600/support.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh92ATc7Dbu_8DVKSeDkpJ9nP4NvHgmiOWw8saF8v59g913mYm3zun5qi6Y7zRXY1XwmpqKDNsIOYMlY34ZfPNgpUmoqCwa61tPRN3BJ0tEYDwkrPhTrcZtE5N7PZ7GfxNLocCcMHETIFw/s1600/support.jpg" height="239" width="320" /></a></div>
<br />
To the left of the frame, my bra. Toward the center, the underwire, which is to say, the support, the very backbone, of my bra. While I was <i>on the plane on the way home</i>, I noticed this state of affairs. You see the correlation here. The bra : my breasts :: my ability to support anyone : anyone. I am that bra! I am interested to find out how all of this will play out in the classroom. Thursday's arrival of a box from Wacoal (a rush order) suggests that, at the very least, come Monday I will appear strapped in and ready to go.<br />
<br />
Speaking of apparel, here's another thing: I threw away two pairs of shoes because I walked across the central activities room so many times wearing them, and that walk meant so many different things to me, was so laden with worry and fear and anger and love, that I could not bear to look at those shoes again. So I am down one pair of flip-flops and one pair of slip-on sneaks. My sister-in-law, who stayed with us this week to help us with our transition back home, tells me that Vans are in again (I knew this day would come!!) and that I need a pair of ankle boots. Kristin also helped me to purge enough stuff from my house to be able to incorporate the many gifts Vivian received while we were in the hospital. On Wednesday I drove a carful of items to Goodwill, an errand that felt simultaneously good and bad. I love clearing out unused things from my house, but I also feel the weight of consumerism and waste even after I've shaken it off. My mom will arrive today for a 10-day stay, and I will enlist her help in getting the new things put away. Bill lowered Vivian's bed and pushed it against the wall--we're guarding against falls--and I'm finally writing this update for all of the people who have been so kind as to ask how we're doing, to offer their help, and to give us some time and space to recover.<br />
<br />
The calendars in my house still read July when we came home. Bill had never flipped the months while we were gone.<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilOLsH4yTtNT1V14mJK7c5QDRY7LJ1UO052USeNrUGPNLXOteSkTtkCq643JUwrJgdRuonMDsONxqA2xoZGEUo5U7D58OeHlHhczsASsyS5sJLR3YCNimIUxCL-oL7lrJvqEAKj_L55nI/s1600/calendar.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilOLsH4yTtNT1V14mJK7c5QDRY7LJ1UO052USeNrUGPNLXOteSkTtkCq643JUwrJgdRuonMDsONxqA2xoZGEUo5U7D58OeHlHhczsASsyS5sJLR3YCNimIUxCL-oL7lrJvqEAKj_L55nI/s1600/calendar.jpg" height="320" width="239" /></a></div>
<br />
You may be able to make out that little magnet on July 31st that says, "Doctor," and has a bandaid on it. That was the day we were admitted to the hospital. Now it's mid-September, and all of that is behind us. It's also in front of us because, you know, we will be back there in the spring for another surgery, and one day they will almost certainly put Vivian in a halo again. But for now we're not looking at that. Today it's sunny in Tacoma, and when I look outside the lines seem crisp.<br />
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<br />Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com2tag:blogger.com,1999:blog-4227564875500209626.post-76452125917999008902014-09-01T22:17:00.005-07:002014-09-01T22:18:23.496-07:00Bones weep.<div class="MsoNormal">
It’s the night before Vivian’s surgery. It’s 10 p.m., but
Vivian and I are both still awake. She was in good spirits all day and into the
evening, but when everyone left the room tonight she said, “Mama, I’m scared.”
We talked for a while, and then I read her another story, and a few minutes ago
I resorted to playing lullabies. It’s funny: the album playing now is the very
one I used to play for her when she was an infant and we were in the NICU at
Children’s Hospital. I guess my unconscious mind knows what it’s doing.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This is such a weird night for us. She’s been in the halo
for 33 days. We’ve been in this hospital for that long. And now tomorrow they
will take the halo off, and they will put the rod in, and then we begin the
next phase of this journey. But Vivian is a little reluctant to leave the halo
behind, and so am I. As badly as we want to get out of this place, the surgery
lies between us and home, and surgery frightens us.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The doctors have told me everything I have wanted and needed
to know, and I’ve told Vivian everything that she has wanted and needed to
know. But there’s no way not to feel distress when doctors say that “there will
be an incision here and an incision here, and then we’ll feed the rod through,”
because this is my baby’s back we’re talking about. I don’t want them to cut
her skin. I don’t want them to drill into her bone.<span style="mso-spacerun: yes;"> </span>“Bones weep,” one doctor told me yesterday.
“You can’t clamp them to make them stop.” <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Bones, then, are like mothers. <i style="mso-bidi-font-style: normal;">Drill into me</i>, I thought. <i style="mso-bidi-font-style: normal;">Leave
her be</i>.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
This is that thing coming up again—that mix of anger and
panic and desperation that makes me want to scream at them to make it stop,
that makes me want to run out of here with her—but then I remember (again, for
the hundredth time) that they didn’t do this to her. They are helping her.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"><br /></span></div>
<div class="MsoNormal">
Now it’s 11, and she’s still awake and so am I. The nurse
just gave her Ativan and melatonin. That’s alarming, you know? But it was also
a good idea. I’m so tired. I think I have to end this post. There were other
things I wanted to write, like about how I’ve become afraid to leave this
place, and often three or four days go by before I will, and then when I do I
drive very carefully and I don’t stay out long; and about how I started crying
tonight when I thought I was going to lie down but instead called Bill and was
overcome by everything that I have been containing for all of these days. This
surgery is not a huge deal—they do these all the time—but what it represents,
and what it culminates, and what it begins: those things are huge, huge deals.<o:p></o:p></div>
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<span style="font-family: Cambria;">The night before the halo placement, Vivian grabbed
the pad and pen from the hotel room and busied herself for a while writing
something. That piece of paper I saved, and I hung it on the closet door in
this room. Tonight when she was distressed I took it down and showed it to her.
I said, “A very smart girl wrote this for you a few weeks ago,” and it—her
message to herself—seemed to soothe her. She stuck the note to the safety bar
on her bed, just at eye-level. Here’s what she saw: the butterfly she had
traced and, under that, what she had written: “You’re almost free. Let it go.” </span><!--EndFragment-->Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com2tag:blogger.com,1999:blog-4227564875500209626.post-62246987126316352252014-08-29T11:49:00.000-07:002014-08-29T11:50:02.779-07:00Furlough<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="color: black; font-family: Times; font-size: 13.5pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-language: EN-US;">Yesterday we went to the zoo, all three
of us, plus Laura from Child Life. It was Vivian's first time off the hospital
grounds in four weeks, and she was delighted to be out and about. Aside from
seeing giraffes, her favorite part of our three-hour furlough might have been
the van ride itself and the wheelchair lift into and out of the van. <o:p></o:p></span></div>
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<br /></div>
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<span style="color: black; font-family: Times; font-size: 13.5pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-language: EN-US;">At the zoo, people stared. Now we know
how the animals feel. Like them, we made eye contact with a few of the
looky-loos but ignored most of them. I was tempted to throw excrement at one or
two people, but I forbore doing so and am probably the better person for having
exercised restraint. <o:p></o:p></span></div>
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<br /></div>
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<span style="color: black; font-family: Times; font-size: 13.5pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-language: EN-US;">Seriously, though, we talked later
about our newfound recognition of what people must (might) feel like when they
have an obvious or unusual difference or disability. In our experience, at
least, it pretty much sucks to be the object of curiosity even if you
understand people's impulse to look. Maybe over time one gets used to it, and
maybe not. Maybe it's better if people just come out and ask, "What's
that?" or "What's wrong?" and maybe not.<o:p></o:p></span></div>
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<span style="color: black; font-family: Times; font-size: 13.5pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-language: EN-US;">At any rate, we let the people look,
and we enjoyed our time at the zoo. From what I could tell, the animals at the
Hogle are mainly in rehabilitation, and when it's time for them to leave they
go to a facility of equal or better quality. For example, the camels that were
once there are now at a camel preserve. This kind of practice makes it easier
for me to tolerate and even to support zoos, but I still get sad looking at
these majestic creatures in habitats that are large and lovely but that still
pale in comparison to the wild. I wonder at the human desire to see everything
with our own eyes or, worse, to control and even kill to assert our dominance. Case in point: the yahoo at the wolf habitat who said to his
9-year-old daughter, "We kill those at our house, huh? We kill them
because they eat our cats." He was saying it as much for us as for her.
His wife laughed and beckoned her husband and kid into the reptile house: a
fitting place for the likes of him. I thought, "Yeah, or you could leave
your cats inside, a-hole." And I thought, "I hope one day you are
mauled by a wolf." <o:p></o:p></span></div>
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<br /></div>
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<span style="color: black; font-family: Times; font-size: 13.5pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-language: EN-US;">Terrible, right? I shouldn't think such
things, let alone so close to my daughter's surgery date. I should envelope
that idiot in love and healing, and then maybe the universe would repay me in
kind. Or maybe the universe is a friend to the wolf, so we're ok.<o:p></o:p></span></div>
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<span style="color: black; font-family: Times; font-size: 13.5pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-language: EN-US;">When we returned from the zoo, I felt
relieved. Our van hadn't been t-boned at an intersection! The pins in Vivian's
halo hadn't conducted heat from the sun and scorched her skin! There had been
no lightning. The clamps in the van had held her wheelchair still. Safely back
in the room, Alex and I crashed. When we woke up, I felt like I was getting a
cold. That is no good. Vivian's surgery is (re-)scheduled for Tuesday, and she
cannot get ill between now and then. Honestly, I don't know how we would handle
another delay. I might just throw some excrement. To guard against that
possibility, I went to Whole Foods last night--it was a less traumatic
experience this time--and bought 10 packets of EmergenC Immune, five for Alex
and five for me, one for each day between now and Tuesday. This morning Alex
woke up feeling exhausted, so I sent him away to sleep. I'm two ticks away on
the crazy dial from bathing Vivian in Purell. We've got to make it intact to
Tuesday.<o:p></o:p></span></div>
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<span style="color: black; font-family: Times; font-size: 13.5pt; mso-bidi-font-family: "Times New Roman"; mso-fareast-language: EN-US;">Then Tuesday will happen, the surgery
will happen. I saw Mike Pond in the cafeteria this morning. He promises to be
tanned, rested, and ready to go after the long weekend. Excellent! May Dr.
D'Astous also get good rest, and come Tuesday may he work some art and magic on
Vivian's spine. May Vivian herself stay healthy and happy and not too scared
between now and then. And may Alex and I bear up. We are tired and cranky, but
we are almost there. We are almost there!<o:p></o:p></span></div>
Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com0tag:blogger.com,1999:blog-4227564875500209626.post-45536589806220056032014-08-26T08:32:00.002-07:002014-08-26T08:33:39.555-07:00Tomatoes!My thinking is, no day can be bad that starts with a delivery of garden-grown tomatoes.<br />
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Mike Pond brought us these babies, picked fresh this morning. I've been hearing about his tomatoes for a few years now, so I'm looking forward to tasting them. I think I'll order toast for breakfast and put a little cheese and tomato on it. With a cup of coffee that will be delicious and will taste a little bit like home. Much needed and much appreciated. Thank you, Mike!<br />
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We've been languishing a bit from the cafeteria food. It's not that it's bad--it's actually decent fare--but it's so different than the food we normally eat, heavier and very meaty and featuring lots of sauce. Also, mealtimes sort of tumble over each other, so that by 5:30 p.m. we've eaten (or at least been served) three huge plates of food. The effect of this over time is to feel constantly full. You may be thinking, <i>How about a salad? How about some veggies? </i>Yeah. Well, I do my best, but any salad bar loses its luster after 27 lunches and dinners, and I try to eat the boiled vegetable medley, I really do, but it's hard for me. Every once in a while the universe (or the cafeteria staff) throws us a bone, like yesterday, when at lunch they served a squash and string bean medley that was tasty and put me in mind of squash from my garden over a bed of pasta with butter and salt and pepper. I think that that will be my first meal upon returning home. And last week they served spaghetti squash one day--equally delicious.<br />
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Anyway: the tomatoes from Mike Pond = Glorious.<br />
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Today is a big day at Shriners. There will be 12 surgeries. I haven't seen it this busy here in a while. All the docs are here in their scrubs, and there are more nurses than usual. You can tell that the doctors love surgery days. They are wide awake and springy, whereas on clinic days they remind me of how my colleagues and I look on student-conference days. I'm drawn to the energy out there today. I feel like hanging out at the nurses' station and talking about the patients and the procedures--you know, talking shop--but this isn't my shop, and ain't no one telling me about patients and procedures. I think maybe I miss work. I know! Isn't that weird?? But it's the beginning of the school year, and I'm so removed from it all. Ordinarily I'd be finalizing my syllabi and going to meetings, thinking during the meetings about all the work I still have to do to my syllabi, and I'd be lamenting the end of summer and marveling over how quickly it's passed. Instead, I'm counting days until Vivian's surgery--seven--and until we can go home--probably twelve--and feeling like August has been eternal, like I've never spent a longer month.<br />
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My hope is that when I'm in the thick of the semester, still exhausted and disoriented from my experience here and worrying more than usual about Vivian, I will remember that time is 99% perception and 1% pink slime, and I will shift the way I look at it all.<br />
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And another thing: I hope I remember what is and is not important. What's important is life and health and love and connection (emotional, intellectual, physical, and maybe a couple of other kinds). What's less important is everything else, some of which is actually unimportant. I'm afraid about Vivian's surgery. I can't remember what I've written and what I haven't, so I may be repeating myself here. When Alex and I talked with Mike Pond a couple of weeks ago about what to expect after the surgery, he urged us not to worry overmuch and, really, not to place our worry and Vivian's spinal rod at the center of our lives. "Don't become crazy," he said. "Some people go crazy." Got it. Check. I asked him what he worries about. He said, "I worry about the surgery." He worries about the surgery because in a way it's the most important thing--it's life, right? and it's health, and as a matter of fact it's also love and connection. Provided Vivian's surgery goes well, all the other stuff will work itself out. If Vivian's surgery doesn't go well, everything falls apart. This is why I'm scared. Also, I hate to provoke the universe by expecting things to go well.<br />
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Some of my friends are big on putting intentions out there and watching everything fall into place, or they trust in God or something like God to do what she/he/it will. I see the appeal of these practices, but I'm just not wired for them. So basically I hope, and when I find myself fretting I will myself to think about what is instead of what may never be. Right now, my fingers are on a keyboard, and a woman is cleaning the bathroom and whistling and humming, and I am annoyed by that because I'm trying to write, and I hear a lawnmower outside and the ventilation system inside, and my right foot is falling asleep.<br />
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In between the paragraph about fear and the paragraph about faith, I ate one of those tomatoes. It was the real thing, the kind of tomato that reminds you that it's a fruit. Hey! a guiding metaphor for this day. And I ingested it, with salt and pepper and a little cheese.<br />
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<br />Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com0tag:blogger.com,1999:blog-4227564875500209626.post-69047905973462711132014-08-21T11:11:00.001-07:002014-08-21T11:17:46.349-07:00Starting to crumble and going public with that factWhat with all the personal essays and Buzzfeed quizzes on the subject of introversion v. extroversion that have made the rounds on Facebook in the past couple of years, I've decided that I'm an introvert. I don't think I used to be, but anymore I feel restored by spending time alone, and while I enjoy social interaction, I prefer it in small doses and small groups (pairs are even better); too much interaction exhausts me. That's the popular definition we've all internalized, right?<br />
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Pity, then, that I've been in a hospital for three weeks. Almost to a person, everyone I've met and see every day is nice and easy to talk to. And still I have become prickly because of all of the talking. Talking, talking, talking: at mealtimes, during nurses' visits, in the play room, everywhere, all the time. Desperate for privacy and quiet, I have begun to avoid the common areas, but people also come into our room. I have hung a sign on the door that says, "Please knock before entering. Thanks." And then, to soften the message, to make it sound less snappish (the period after "Thanks" says it all), I shaped the sign into a word bubble and taped it near the mouth of a paper sheep. So now everyone knocks, but they still come in--of course they come in; they have to come in; and, as I said, they're really nice--and I feel a little edgier every time. When there's a knock, I say, "Oh, my god," and Alex yells, "Yes? Come in!" in a cheery way. It's good that he's here.</div>
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Yesterday was an off day for me. Bill went home, and that was part of it--the angels cry when our family leaves--but also this place is getting to me. Carolyn bought Vivian and Taylor lunch from the outside world, and we all ate together. (Taylor ordered Taco Bell, and Vivian ordered Vegan pho. They are a study in contrasts, but they are pals.) As you might expect, over lunch there was conversation. We talked about the street numbering in Utah, which, if you are an outsider, is maddening. East 800 South, anyone? But then Laura (another child life specialist) mentioned Prague, and Carolyn brought up Croatia, and I could have kissed them. It was more talk, but somehow this talk was restorative. I think it took me out of here a little and engaged my imagination in something other than anxiety and fear over Vivian's well-being. </div>
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That's what people's letters do for me, too. When I receive one, I tuck it away in my purse and read it when I'm alone. My grandmother once showed me some chocolate that she had hidden in her toilet tank so that she could enjoy it without my grandfather haranguing her about her weight. We share DNA, she and I. It's a form of eternal life.</div>
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Because yesterday was so bad, I dug into the stack of postcards my friend Alisa had given me for moments like this. She wrote a message on each one to provide some comfort or perspective. Yesterday's was that part from the Regina Spektor song from <i>Orange is the New Black</i>: "Think of all the roads. / Think of all their crossings. / Taking steps is easy. / Standing still is hard." It was such a funny thing to draw that card because I've been thinking so often about the parallels between this and that other kind of incarceration. Also, I watch that show, and those lines have always stood out for me in the blur of the song. It is very hard to stand still, and while I've learned this lesson at several points in my life it has not become any easier to take. Well, maybe it's become a little easier; one gets practice. But it doesn't come naturally to me. </div>
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I wonder if Alisa still feels the truth of these lines. For the past nine days she's been hiking the Wonderland Trail, which goes all the way around Mt. Rainier. So many steps, and they can't all have been easy to take. She'll be back tomorrow, so she can tell us then. I wonder if she wrote this one postcard with her journey and my journey in mind, and if she figured that mine would be harder. If so, that was generous of her, don't you think?</div>
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I will try to be generous, too. As I wrote and erased that sentence, someone knocked on our door, looking for Vivian. "Yes?" I called. The nurse's aid poked her head in. "She's in the play area," I said. "Ok," she said, and she closed the door again. So simple, so unobtrusive, yet I felt my heart seize up during this interaction. I wanted to cry. I wanted to say, "Please just leave us alone." You see? I think I'm losing it a little. There was nothing wrong with what just happened, and the aide is so nice, and I like her very much. So I retyped, "I will try to be generous, too." I can hear some of my friends saying that I should start by being generous with myself, taking care of myself, cutting myself some slack. I'm trying to do that, really, but I'm also almost ashamed over how crummy I feel, and I'm trying really hard not to telegraph it to Vivian, who is doing quite swimmingly these days, and not to make the people who work here hate me. </div>
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At times like this I wish I were a better person. Or is everyone this way? If everyone is this way, you have to tell me. </div>
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Lots of love from flawed old me.</div>
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Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com0tag:blogger.com,1999:blog-4227564875500209626.post-47051159375965747052014-08-19T15:39:00.003-07:002014-08-19T15:39:31.091-07:00Catching up"Time passes differently here; I've been here just long enough to notice that," says Bill, who has been here since Sunday morning and will leave tomorrow. He's agreeing with me. Poor guy has been hearing me talk about this phenomenon for weeks. Each day passes incredibly quickly. Like, right now I look at the clock and can hardly believe it's 3:15. It seems we were just at breakfast. Yet the days accrue at a painfully slow pace. Alex, Vivian, and I have been here for 20 days. Today is the 20th day. We have 14 days to go before Vivian's surgery, and then we'll be here for about 5 days after that. This means--impossibly--that we've just now hit the halfway point. What? How can that be?<br />
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I know that I can read this optimistically: we (probably) have fewer days remaining than days spent! But, to be honest, that 19 days sounds long. I think of what we've done, and then I think: we have to do it again. How will we do it again?<br />
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Visitors help like crazy. For one, there's a third person available to spend time with Vivian, so Alex and I can occupy ourselves in ways that help to sustain us a bit. Yesterday I took a 2-and-a-half-hour nap. I would have slept longer, but Alex woke me up so that I wouldn't miss dinner. Today Alex is taking a nap and going to Target. I paid my bills and sent a couple of emails, and I am blogging. These things feel like accomplishments, and I have to wonder how I will manage when I return to the pace and intensity of work. Maybe it will feel like a welcome change.<br />
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Oh, and I already wrote my letter today. I haven't talked about my letter-a-day project since first posting about it in July, but I have kept up with it this whole time. Most days I don't remember to write until bedtime, and those are hard letters to write because by 9 p.m. I am seriously fatigued. Today I wrote in the afternoon, and that was easier and more pleasant. (Thank you, Bill!) I wonder what these letters would look like if I were to put them all together. At the suggestion of friends, I have photographed a few of them, but for the most part I don't even re-read them before sealing them in an envelope and dropping them off at the front desk or in the mailbox down the hill. For all I know, I've written a bunch of hazy, fragmented, and vaguely depressing letters. It's a good thing I'll be working on this project well beyond our time here. Then again, I may remain hazy, fragmented, and vaguely depressed until next July. Apologies in advance.<br />
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Writing these letters has helped me to realize what a chore compulsory letter-writing must have been when people had to write letters daily or almost daily. But it has also proven to be meditative and enjoyable. Someone told me a few months ago that meditation does not have to involve sitting in the lotus position and chanting, that it can be anything you do to bring focus and quiet to your day. Writing letters does that for me, and unlike any meditation I've ever tried, I am actually doing this regularly. And what's cool--what's really healthy, probably--is that the form of a letter dictates that one not only write about oneself. So while I devote a good chunk of each letter to writing about whatever is happening in my world here at Shriners, I also think about my correspondent's world and wonder and ask questions about it. These are good practices, and not only while you're sequestered in a hospital.<br />
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Aside from our long-term and repeat visitors (my mom, Bill, Jenny, and Leon), we've had visits from two families of kids Vivian's age who were in halos earlier this summer and have the same type of growing rod that Vivian will have. It was a comfort to meet these families and to see these kids, both of whom have recovered from the surgery and are busy being kids. One of the kids was kind enough to show us her back, so I now have an idea of what kind of scarring we'll be faced with, and both sets of parents were very open about their post-hospital experiences. For the first three months after the surgery, Vivian's movement will be more limited than it will be later on because her bones will have to heal, and we don't want to risk displacing the rod or fracturing a vertebrae. I hear that the first 10 days post-op will be the toughest: there's the pain and healing you'd expect, plus the added factors of weakened neck muscles from the halo, and seriously altered equilibrium because of the rod and the correction of the curve. After that, things appear to ease up significantly, and our doctors have assured us that while Vivian will not be allowed to go on the monkey bars or a slide or experience 4Gs on an extreme roller coaster, she will be able to go about her kid life fairly normally. After talking to one family, I considered requesting a course release for fall semester, but Mike Pond urged me not to do that. He said that the rod should make our lives easier, not harder, and that we should live our lives. Vivian will probably be out of school for a few weeks in September, but after that...game on.<br />
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This is not to say that I will not be very careful with her. I know that I will be. So will Bill and Alex be, and whoever else is lending a hand. But I'm hopeful that Vivian will respond well to this surgery. Fingers crossed, everyone. As my friend Laura taught me to say--she got it from the Wiccans--<i>Hold us in the light.</i><br />
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I'm sorry to go on at such length, but there's a little more that I want to share. You know how in my last post I compared our stay here to being in a low-security prison? The similarities are mounting. Last night was craft night, and Vivian and her pal Taylor (also in a halo) assembled monkeys, rabbits, and lambs out of paper and chads. Taylor's mom asked if we could keep the Zip-Loc baggies that the crafts had come in. "You never know what you might need these for," she said, and I agreed. <i>We could make pruno, </i>I thought (and may actually have said aloud). <i>We could pocket a chad and use it for a shiv. </i><br />
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I kid--I kid because it gets me through, just like the view from our window gets me through.<br />
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You know what else gets me through? This place. Shriners Hospitals for Children are incredible. Did you know that they are charity hospitals? We met a woman in the elevator yesterday whose young daughter is here for her second leg surgery to correct a disability she was born with. Medicaid told this family that the surgery would be cosmetic and therefore would not be covered. Cosmetic? This child was in pain and could not walk properly. Enter Shriners. Now this girl has the chance to live a healthy and pain-free life, and the family has not suffered financial hardship in order to get their child the medical care she needs. There are many such stories here. I will be eternally grateful to Shriners (and to this Shriners, in particular) for accepting Vivian as a patient, and to Bill for learning about EDF casting--the late-night internet discovery that led us many years ago to Dr. D'Astous and Mike Pond and Shriners SLC. As hard as this long-term stay is--and it is hard--I am grateful that we are here, and everyone is making us as comfortable as they possibly can. <i>Gratitude, my friends!</i><br />
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I am also grateful to you guys, our friends and family, for your many demonstrations of love and support. We all are. Thank you! I send my love.<br />
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Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com0tag:blogger.com,1999:blog-4227564875500209626.post-38465752050515786022014-08-14T07:59:00.002-07:002014-08-14T07:59:22.881-07:00Look at the child.
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<br />
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Would it be overly dramatic to begin this post with a
reference to the opening line of <i style="mso-bidi-font-style: normal;">A Tale
of Two Cities</i>, to say of the past few days, “It was the best of times, it
was the worst of times, it was the age of wisdom, it was the age of
foolishness,” &c., &c.? Probably. So I won’t. Yet I did!<o:p></o:p></div>
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<br /></div>
<div class="MsoNormal">
Weirdly enough, I’ve been craving nineteenth-century
literature since I’ve been here. I’ve told you that this place is a ghost town
on the weekends. On our first weekend, I was returning from the kitchen through
the twist of hallways that lead you in the back way—because the nice man at the
desk makes coffee at 9 a.m., and us long-timers are welcome to grab a cup (the
cafeteria being closed and gated until 11)—when I spotted <i style="mso-bidi-font-style: normal;">The Mill on the Floss </i>on a cart of free books. It felt like a sign.
I haven’t broken the spine of this book yet, but I’ve been carrying it around
with me for 12 days. I can’t imagine reading anything contemporary right now. I
don’t want to be carried away to somewhere else that I could conceivably be,
but I wouldn’t mind spending some time in the English countryside a hundred and
fifty years ago. Plus, those people knew bedside care. The women were always
tending to someone. Sisters from another (mustachioed) mister.<o:p></o:p></div>
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<br /></div>
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Over the past few days I’ve had to confront the seriousness
of Vivian’s condition. I’ve realized that the five years of castings and braces
had given me a reprieve, allowed me not to dwell on that fact, because if she’s
been constricted she’s also been free. She’s been a kid. But here I am in the
center of the place that before I’d only just skirted the edges of. <o:p></o:p></div>
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<br /></div>
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You might have heard me describe progressive infantile
scoliosis like this: “It’s like the adolescent-onset kind, only more serious
because the twisting and curvature of the spine as the child is growing can
affect the development of the heart and lungs. If untreated, it can lead to
death in early adulthood.” You see, I know that it’s serious, I have always
known, and still I have felt angry with the doctors for making Vivian endure
the halo and for keeping us all here for over a month. I have been upset that
we only just recently learned that it will take some time for Vivian to recover
after surgery—she’ll have to learn anew how to balance and move her body—and
that she will not be able to ride a giant roller coaster or become an Olympic
gymnast, her opportunities limited and her only 7. I have compared our
experience here to being incarcerated, only in the nice kind of prison, like
the one Martha Stewart went to, where she had plenty of time to crochet ponchos
for other inmates and might have been allowed to touch the people who came to
visit her. <o:p></o:p></div>
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<br /></div>
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But all of this has to be. It’s been determined not by the
docs but by Vivian’s DNA. That is the hardest thing to remember, to fully realize.
The doctors are helping her in what is literally the best way possible in 2014.
It’s a kind of miracle that 13 lbs. of weights, two pulleys, some rope, and 6
screws are pulling Vivian’s back straighter as I write, and more of a miracle
that she is racing around this place with no pain and in very good spirits. I’m
watching all of this go down, and I’m realizing that my daughter has this
serious spinal disorder, and that she’s going to have many surgeries, and that
her spine will never be straight. I’m realizing that she will probably be very
small, and I’m worrying about how other people will treat her down the road.
And then I’m thinking, this is Vivian; she is terrific, and she has family, and
she has friends, and she has spirit, and this is her life, her “one wild and
precious life.” It’s fear and anger and wonder and gratitude and love, you
guys. That’s the soup I’m swimming in. <o:p></o:p></div>
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<br /></div>
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The last time Vivian, Alex, and I were in a hospital for a
month, Vivian was recovering from esophageal surgery and the event—superior
vena cava syndrome—that almost killed her. One night, a NICU or surgical
resident couldn’t get a good blood pressure read on her, so he ordered a blood
transfusion. It was to be her second. I was alarmed, and I objected, and I
asked him why it was necessary. She was only three months old. Just as he began
to explain, Vivian’s surgeon walked in. It was nighttime, and he always visited
before he went home. We told him what was going on, and he walked over to
Vivian, so tiny and attached to all manner of tubes and wires, and he took her
blood pressure. It was normal. He turned to the resident and dressed him down.
(The poor guy was mortified; he never made eye contact with me again. For all I
know, he quit the program after that. It cannot be easy to be a resident.) I
remember what the surgeon said: “Look at the patient.” What he meant was, <i style="mso-bidi-font-style: normal;">Does she <u>look</u> like someone who needs
a blood transfusion? Machines can malfunction. People are reliable sources of
information</i>.<o:p></o:p></div>
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I think of that line often, only I
say, <i style="mso-bidi-font-style: normal;">Look at the child</i>. There’s the
diagnosis, and there are the surgeries forthcoming, and there are the
possibilities of complications, and there are the stories the other parents
here tell me about their children, stories that terrify me, and there is the
child, my child, our child. And she is smart and beautiful and resilient and
strong and scared and homesick and a little angry. What does she need right
now? Right here? That is what I focus on each day in order not to lose myself
in what might be or could have been.</div>
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<br /></div>
<!--EndFragment-->Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com1tag:blogger.com,1999:blog-4227564875500209626.post-127578950377831632014-08-10T10:40:00.003-07:002014-08-15T22:02:10.249-07:00Break-bone fever, tamales, and cricketsI think we've been here 11 days. Eleven is my lucky number, and so far the day has been good. Coincidence? I don't think so.<br />
<br />
My mom arrived last night, and Vivian was beside herself with excitement. It was nice to see her so happy. She showed Grandma all of the tricks she can do in her walker, and there are many. The weight she's carrying around is up to 10 lbs now, so I think she's experiencing something close to zero gravity. Right now she has one leg up on the pool table and is hands-free (a move I patented in the '80s).<br />
<br />
Because my mom is here, I was able to catch up on some emails and light work stuff, and I'm also taking the opportunity to write this update. We seem to have gotten through the worst of the disappointment and grief over the change in the surgery date, and many nurses and other doctors have reassured us that if Vivi's surgeon thinks that the delay is necessary, the delay is necessary. I was just having a conversation with the pediatrician here, and she told me that Dr. D'Astous (he's the surgeon) is truly gifted, "an artist," she said. I feel like Vivian is in excellent hands. He's also an incredibly nice man, as I may have mentioned in my last post. Currently he's in Equador on a medical mission. Fingers crossed he comes back!! The humanitarian work these people do takes them far and wide, and sometimes they get sick. One of the anesthesiologists here has had Dengue twice and malaria a handful of times. He's still standing, though, so there's that. (In case you're wondering, he told us that Dengue is known as "bone-crushing disease" or "break-bone fever," and that he's never felt worse than when he had it. Twice.)<br />
<br />
I really enjoy chatting with the doctors, nurses, and staff here. You've never met a nicer bunch of people, and they're interesting, too--and full of book recommendations! Science types DO read for pleasure.<br />
<br />
Downstairs there is a gratitude board, and families and staff alike add messages to it:<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZfY-wui-pkxtMikKwZ1duiOn8fS20Xa5h0gm4q8YYIiJLo2L933HIfyKzIszQmR9XDsDuGeV9RtSHcrMLV1umUchipHI6dv1ssvK-a-8VOxN7Ae9xjFbIa6FthxgqLfkv9wBgCk0wOJA/s1600/Gratitude+-+docs.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZfY-wui-pkxtMikKwZ1duiOn8fS20Xa5h0gm4q8YYIiJLo2L933HIfyKzIszQmR9XDsDuGeV9RtSHcrMLV1umUchipHI6dv1ssvK-a-8VOxN7Ae9xjFbIa6FthxgqLfkv9wBgCk0wOJA/s1600/Gratitude+-+docs.jpg" height="239" width="320" /></a></div>
<br />
Here is the one that we added on our first full day here:<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGke614-XqvpvDOuLyi_ZYuF2__dTCzXzVmkjuuBI_WJrzL8tjGKRUNSWKNeEK-HjoHvnjd5_n1dcTo9BmYa_OgJEbFtznN2mZAIoTcMUZNC11pG10WJAp8jBMJhWQhwKZXCQqxMx6uE0/s1600/Gratitude+-+us.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGke614-XqvpvDOuLyi_ZYuF2__dTCzXzVmkjuuBI_WJrzL8tjGKRUNSWKNeEK-HjoHvnjd5_n1dcTo9BmYa_OgJEbFtznN2mZAIoTcMUZNC11pG10WJAp8jBMJhWQhwKZXCQqxMx6uE0/s1600/Gratitude+-+us.jpg" height="239" width="320" /></a></div>
<br />
This one is Vivian's favorite:<br />
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And here's my favorite:<br />
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Because her hips don't lie.</div>
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I mentioned a few days ago that I would write about SummerFest, which happened on August 5th. It was a fun event outside that included games (like the beanbag toss and freeze-dancing), music, a rock wall (which Vivian did not climb), face painting, and prizes. Vivian won a CD of children's music plus a bunch of swag, and she ate popcorn and met a few of the Salt Lake City Bees and their mascot, Bumble. Bumble even danced with her. The child-life staff here do so much to make the kids' experiences as pleasant as possible. Carolyn is the child life specialist who's spent the most time with Vivian. She's helped Vivi to decorate our room and has found lots of fun activities for her to do. On Friday we converted a make-a-bug kit into a make-the-planets kit, so now we've got the solar system hanging in front of our window. Along with the banner from Auntie Joyce and the adhesive flowers from Carolyn and the blinged-out "V" from Arianna and the origami cranes from Alisa, our room is downright cheery.</div>
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I suppose the last bit of big news is that Vivian won first place in Friday Night Bingo. Friday Night Bingo is not amateur hour, people. It's the real deal, complete with one of those metal spinning devices for the balls, a volunteer caller who knows his stuff, and games that last a very long time. Each kid gets to play four cards at once, and the competition is fierce. Vivian prevailed with 13 wins, and one of the kids who had fewer wins has declared next Friday a grudge match. We say: Bring it.<br />
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Well, I have more to say, but it's 11:30, and around here on the weekend, that means we have to eat lunch before lunch disappears. Last night we raced down for dinner at 4:30, afraid that we'd miss out on Jose's tamales. We did not, and they did not disappoint. Thank you, Jose. Remember what I said about small comforts? The tamales were one of them. Oh! And last night we took Vivian outside to see the Super Moon. She hasn't been outside here at night before, and when she stepped out do you know what she said? "What's that sound?" It was the crickets. She had never heard them before and was captivated. God, I love that girl.<br />
<br />Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com0tag:blogger.com,1999:blog-4227564875500209626.post-34494668053573289132014-08-08T06:23:00.001-07:002014-08-08T10:46:18.908-07:005 more days<br />
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As you know if you saw my Facebook post yesterday, our doctor changed the date of Vivian's rod surgery from August 28th to September 2nd. We understand why he did it: he will stop performing these surgeries in a couple of years, and before that time he wants to do a good many of them with the doc who will take over. The doc who will take over is not available on August 28th. A rational decision. Even so, we were crushed my the news, Vivian especially, and me because of that.</div>
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Vivian is a smart person. When I told her the news she did a quick calculus and realized the following: </div>
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1) "They've taken away all of my progress. I felt like I was almost done, and now I'm back to four weeks again!"</div>
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2) This will put her in Salt Lake City on the first day of school ("I know I wasn't going to be there on the first day, but now I won't even be close to the people in my class!")</div>
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3) This will be difficult ("Don't they know I'm just a kid? Why can't the other doctor change his schedule on the 28th? What's more important than getting me out of this halo on time? They don't know what it's like to be attached to something for a month!")</div>
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4) This means that Grandma and Auntie Joyce might miss her surgery (they had already bought tickets for the earlier date). </div>
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She said all of this, asked all of it, in the most plaintive way, and she cried a lot. Later in the day we went through it again, and this time she got angry. She cried, sure, but she also kicked her walker and raised her voice. </div>
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I sat there with her and let her cry and rage, and I told her she was right on all counts, and I told her I was just as upset as she was. I also tried to show her the bright side, which I really had to reach for, but perhaps it's true that the delay will give her soft tissue five more days to stretch, and that that might give us a slight improvement when the metal goes in. And it's certainly true that it's in her best interest that the other doc be there. A nurse reassured her that her surgeon would never make such a change unless it were in her best interests--and this is true; he's a lovely man who has helped Vivian avoid surgeries all this time until now. Another nurse told her that everything happens for a reason. You know that I hate those sayings; I simply don't believe any such thing is true. There's no "reason" for 200+ girls having been stolen from a school in Africa and sold into sex slavery other than depravity, inhumanity, evil, hatred, cruelty, self-interest, and greed. There is no light to be had, no silver lining to every cloud, or if there is, I don't care to point it out when the cloud is so very, very dark. There's inhumanity in <i>that</i>. </div>
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Even so, I let the nurse's assurances wash over Vivian and me. Earlier that day I had given Vivian my own version of how the universe works, and it wasn't so different: sometimes we suffer, and it's a very long time before we can see how the suffering made us stronger or better. (I also believe that sometimes we suffer, and nothing good comes of it, ever, but I don't want that to be the case for Vivian.)</div>
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She asked what's been hard for me. I told her that I haven't had to spend time in hospitals or casts like she has, but that I had a mean and frightening father. I told her how scared I used to be and for how long, and that's why I won't see him even though he lives in our very town. I told her that my father's behavior taught me what kind of a mother I wanted to be, which is a great mother, and I told her I think I am a great mother to Vivian. I told her she is lucky, that she has good parents who love her and protect her, who would never try to scare her or hurt her. I said, "Five weeks is a long time to wear a halo, and 25 years was a long time to be afraid of my dad." That soothed her somewhat. She wanted not to be alone. She wanted to know that other people have had to bear what feels unbearable. She is only 7.</div>
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My cousin Jenny came to visit yesterday, a bright spot in a gray fog of a day. She and I went for a short walk, which did me some good. Jen delivered a beautiful china tea set that her mom, my Auntie Joyce, got for Vivian. Apparently my mom will bring homemade cookies when she visits--she arrives Saturday!!--and we'll have a tea party. Vivian loves the tea set. It has fairies on it, the real ones, not the Disney version. It is beautiful and civilized, and so are we now.</div>
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They put Vivian's bed up on blocks in the morning because she had hit the 9-lb mark (today she'll go up to 10), and she was being pulled up too far toward her headboard at night. Now the bed looks like this:</div>
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If there's no photo there it's because the wifi is so sketchy that my gmail will not even open, so I cannot retrieve the photo. Good times.</div>
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One thing that is driving me crazy during the hospital stay is that I can't keep track of all of our stuff. Yesterday when my brush wasn't where I thought it was, and I had to walk back and forth between the parent room and Vivian's room a few times before locating it--and all I wanted to do was to dry my hair--I lost it. I punched the bed five or six times in a fit of frustration. And, of course, in doing that my hand clipped the edge of a beautiful beaded necklace our friend Sheila had made for Vivian, and beads flew everywhere. I sat on the floor and cried, and then I crawled around picking up beads. I found them all and will get the necklace repaired when we get home, but now I have to tell Vivian what I did, and it's more bad news. It's the little things that lift our spirits, and it's the little things that make us fall apart. And this is because of the very big thing we're contending with that we're powerless to do anything about, not only the halo and the surgery rescheduling but also Vivian's diagnosis of progressive infantile scoliosis. It is a tough disorder, the most serious of the spinal problems, according to Mike Pond. And my little girl has it, and we have to do all of these things, and there are no reasons--it's idiopathic--or guarantees, only best efforts and hope. </div>
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Maybe today will be better. But my gmail will not load, and so I cannot include pictures. This is the kind of small snafu that makes me want to scream. How taxing can it be on a wifi system to load gmail? How is it possible that I cannot so much as share a photograph right now? If you were here I would show you the bed, and I would show you how we rearranged the room and how cheery the window looks from the outside--I posted the wrong window the other day--and I would introduce you to Vivian, and we would play a game or go get breakfast.</div>
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Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com0tag:blogger.com,1999:blog-4227564875500209626.post-62467786984043450052014-08-06T19:39:00.001-07:002014-08-06T19:39:14.952-07:00My 13-hour Blog Post
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When I went down for coffee this morning, I ran into the
family from Peru we’ve gotten to know a bit over the past week. It was only 7
a.m., but they were showered and dressed, and since they were also in the lobby
it could only mean one thing: they were going home. Released! We didn’t talk
much because I don’t speak Spanish, but the kids played together and the
parents were really nice; you don’t need conversation to figure out that kind
of thing.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
At home I do my best writing in the morning, but here I tend
to blog at night. I can see the difference in the finished product: my posts
get the message across, but they’re pretty rough. Last night, though, I was too
exhausted to write. I didn’t even have the energy to call Bill, which I usually
do after Vivi’s asleep and before I crash. I don’t know what it was about
yesterday, but it wrecked me. This morning as I write I can see why I’ll want
to stick to nighttime composition. To write these two paragraphs has taken me
about 30 minutes because I have been interrupted 7 or 8 times. Vivi’s watching
a movie, but still she has needed some cereal and then dropped the cereal on
the floor, and the nurse has come in with medication, and the nursing assistant
has taken Vivi’s vitals, and the physical therapist has come in to check the
weights, and Alex has texted about picking up a bagel for Vivi, and Vivi has
asked, “Where’s Daddy? I’m hungry,” and then she’s wanted cuddles, and then her
docs came in to visit her. Let me tell you, medical professionals and hospital
support staff hit the ground running early, every day, and so do we. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Speaking of medical professionals, Alex and I had a powwow
with several of them in yesterday’s care conference, a meeting at which the
people who oversee the many elements of Vivian’s care provide us with
information and answer any questions we might have. Everyone at the meeting was
open, informative, and supportive (like all the people who work here); even so,
I think that the care conference is part of what sapped my energy yesterday. It
seems that whenever I get new information about Vivian’s condition or
treatment, it registers as a sucker-punch, and I feel dazed and a little angry,
and I want to cry. And then I turn it around in my head for hours or days, and
then I come to terms with this new reality.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Here’s what we learned: We will be able to return to Tacoma
very shortly after Vivian’s surgery, so, like, by September 1<sup>st</sup>
we’ll likely be home. (Hooray!) But it will be another four weeks before she
can return to school. What? What are we going to do? Here are the questions
that reeled through my brain as the care conference proceeded: How will I break
this news to Vivian, who loves school and misses her friends and teachers? How
will I go back to work while I’m also helping my daughter to convalesce?<span style="mso-spacerun: yes;"> </span>Will I need to take federal family leave and
so go without pay for that time? If I do that, who will teach my classes? And
what will become of my evaluations? I’m up for review in January, and these
evaluations “count,” as they say. If I do go back to work, who will stay with
Vivian, and how will I manage to care for her while handling a full slate of
courses and all the work that entails? Will I sleep? How am I going to do this?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We also learned that Vivian’s growing rod will probably be
lengthened every 6 months, not every 9 as we had initially been told (or
remember having been told). That puts us back here in late February, by my
calculations. Alex will be embroiled in legislative session at that point. I’ll
be not quite at mid-semester. Again I wonder, how will we manage? What will we
do? How long will our hospital stay be then, and what will Vivian’s recovery be
like?<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
It occurs to me that many families whose children have extraordinary
medical needs have one parent, usually the mother, who does not have a job (by
which I mean, a paying job). I know this from the research I did to write that
op-ed I shared on Facebook last week. These families must survive on
one income, of course, and when travel and prolonged hospital stay are factors
and they have other children, even stay-at-home moms must get very worried
about how to manage it all. I have only Vivian, and that simplifies things, but
the incompatibility between being a primary caregiver and a worker is enough to
make me nearly despair of being able to pull it off. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Then, as I tend to do, I rethink that language: Really? Does
this situation call for despair or anything close to it? No. It will be very
difficult to negotiate these frequent surgeries, but it will not be impossible,
and we’ll figure it out. I look to my left and see my kid wearing her halo, and
I think, really, Tiffany, you don’t have it so bad. These treatments are the
best options for Vivian, and I am beyond thankful that we get the wonderful
care that we do here. We’ll make all of it work, but, boy, it was a lot to
absorb yesterday.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
We have a provisional plan: I’m going to stay home with
Vivian for the first two weeks of the semester, as planned. Alex will return to
work earlier than he had expected to. We’re going to ask my mom if, rather than
come to Tacoma immediately upon our return from the hospital, she can come
during my first week back on campus. (Fingers crossed on that one.) The week
after that, Alex will take a leave from work to make up for the early return. And
in this way we will get Vivian back on her feet and back to school. Ask me
later about February.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The other realization I’ve had since being here, and it was
corroborated during yesterday’s meeting, is that our lives will change once
Vivian has a growing rod. Things that she loves to do, like ride roller
coasters and climb on playground equipment, won’t be available to her anymore.
Most of the information we received about these limitations we got from another
parent, so rather than dwell on them here and now, I will wait to hear from
Vivian’s docs specifically what she will and will not be able to do with a
growing rod in place. I understand that the thing to do will be to emphasize
and get her involved in what she <i style="mso-bidi-font-style: normal;">will </i>be
able to do. We’ve got that covered. Even so, we need to figure out how to break
the news to her, and we need to be able to support her as she (rightly) mourns
the loss of a certain amount of freedom. I am not a fan of rushing to the
positive. Sometimes things suck, and I believe that it’s ok—and healthy—to
acknowledge that and to feel those feelings. I know that we will eventually
accommodate ourselves to our new normal, and I also know that it will be hard
at times. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Speaking of hard, evenings can be tough around here. By
then, Vivian, Alex, and I are all fatigued, and Vivi tends to dwell on how much
she misses home or wishes she didn’t have to wear the halo. She also has a hard
time getting comfortable in bed, as you can imagine. Last night was made more
manageable by the gift of a Hello Kitty blanket from Caroline, the child life
specialist whom Vivian adores, and by the physical therapists’ tinkering with
the angle and height of the bed. Tonight we opened a care package from our
friends the Wades, and Vivian pretty much flipped out over receiving a golden
ticket in her chocolate bar, Willy-Wonka-style. Small comforts have been getting
us through, as have the support of our friends and family. Let me tell you: a
man who has worked here at the hospital for 25 years told us he has never known
a child to get more mail than Vivian does. While he occupies a position of some
authority at this hospital, he often hand-delivers her mail because he’s so
tickled by the phenomenon. Thank you to everyone who has written or sent a
gift. I have not yet been able to acknowledge them all properly or even at all,
just as I am miserably behind on emails, but every note, every letter, every
gift, every email, every Facebook comment goes a very long way around here.
Thank you, thank you, thank you.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My writing of this post was interrupted yet again by, well,
a hundred things, including my own shower, and then lunch, and then dinner. If
you can believe it, as I write this paragraph it is 8:30 p.m. This is how our
days go! I have to rush back to the room because it’s bedtime. Tomorrow I will
write about SummerFest, which was a fun outdoor festival the hospital sponsored
today, and I’ll post a few pics. Good night for now, and thanks for slogging through such a rambling update. Love!<o:p></o:p></div>
<!--EndFragment-->Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com0tag:blogger.com,1999:blog-4227564875500209626.post-56612272394088376722014-08-04T22:12:00.002-07:002014-08-04T22:12:39.009-07:00Photos and stuffI didn't get much sleep last night because I spent the night in Vivian's room. A nurse comes in every two hours to check on her, and while Vivian doesn't wake up during these checks, and the nurses are really quiet and very quick, I'm a light sleeper, so...today was caffeine-fueled, to be sure. I am at the Ronald McDonald House now, and although I should turn out the light, this blogging is too therapeutic to skip.<br />
<br />
For the first time tonight I helped myself to some of the free food available to me here at Ron McDon. As my heating pad was in the microwave, I checked out the leftovers fridge and found just what the doctor ordered: two Kraft singles and a slice of bread. Just then it was heaven to me, better than anything Whole Foods dished up yesterday and without the attitude. Thank you, Ronald McDonald House!<br />
<br />
Vivian had another good day although she was complaining of discomfort at bedtime. It's hard for her to fall asleep in a bed that's at a pretty sharp incline while she's pulled upward up by an apparatus attached to her head and anchored by weights. In the daytime, though, it's a sight to see her cruising around on her walker, and I do mean cruising. She gets a lot of attention as she scoots around the hospital and approximates zero-gravity, and, a performer at heart, she likes the audience approval. The docs and nurses and other parents tell us stories about overconfident and dangerously acrobatic kids flipping the walkers over and crashing to the ground, so I'm constantly running after Vivian and cautioning her to slow down on the turns.<br />
<br />
Here she is, levitating. Safe enough.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHy6ZqGA0c3FiRuGEoY8nobs0SYxiZ9gJx_XUnk4oY-G247egMsrmGETwy0bs2SJ2EwZ4BRCeLOEfA8sejgBYDRzqO3wwUDFThvWKFWC2SlhlGl37Pv_lburBdMf-FqJmITzRZZ6gUtao/s1600/SLC+4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHy6ZqGA0c3FiRuGEoY8nobs0SYxiZ9gJx_XUnk4oY-G247egMsrmGETwy0bs2SJ2EwZ4BRCeLOEfA8sejgBYDRzqO3wwUDFThvWKFWC2SlhlGl37Pv_lburBdMf-FqJmITzRZZ6gUtao/s1600/SLC+4.jpg" height="239" width="320" /></a></div>
<br />
Today the physical therapists added another pound to her stack of weights. Each weekday they will add another until she maxes out at 15 lbs. If you're a 35-lb kid, that's a lot of weight to have suspended from your head. Right now she's at 6 lbs. Whenever I think about this ritual, my mind turns to Giles Corey, the Salem man arrested for witchcraft who, in protest of the "trials," refused to plead guilty or not guilty and so was sentenced to death by pressing, which means that he was crushed by rocks. Defiant to the end, his last words reportedly were, "More weight!" Giles Corey was a badass, and so is my daughter.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn1hbZpLuNsgRtIoWQu-Ni5Rm3yNLo9qJ98BC3jiO7aUdTwL0IV_cABsjWrd9x993zjtcCMZJDNt-7xU3oRGU-SEjVsIhhDIpPqTXvzoWpsq77Kx358SGqmhr_s-sm3yRknX7s-xBjwb4/s1600/SLC+6.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgn1hbZpLuNsgRtIoWQu-Ni5Rm3yNLo9qJ98BC3jiO7aUdTwL0IV_cABsjWrd9x993zjtcCMZJDNt-7xU3oRGU-SEjVsIhhDIpPqTXvzoWpsq77Kx358SGqmhr_s-sm3yRknX7s-xBjwb4/s1600/SLC+6.jpg" height="239" width="320" /></a></div>
<br />
<div style="text-align: center;">
More weight!</div>
<br />
I'll bet Giles Corey didn't have one of these, though, or maybe he did and that's why people thought he was a witch:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgf1YDpsMAoBohIdJbFWt2zW-JAGF0KhlFR9ALDnKjEWIguhnZ8xiwKMk8T3crb5Knm4e-r5STQ0mQu8gooly680s37uEEOhOYEhyphenhyphenpVaAynsMgF88rwIqzIv5USa7uJWd8w1v4-KaAPL30/s1600/SLC+1.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgf1YDpsMAoBohIdJbFWt2zW-JAGF0KhlFR9ALDnKjEWIguhnZ8xiwKMk8T3crb5Knm4e-r5STQ0mQu8gooly680s37uEEOhOYEhyphenhyphenpVaAynsMgF88rwIqzIv5USa7uJWd8w1v4-KaAPL30/s1600/SLC+1.jpg" height="239" width="320" /></a></div>
<br />
It's a noon box, decorated by Vivian before we left Tacoma. Every day at noon, we check inside, and there's a surprise for her. Sorcery!<br />
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<br />
Today there was a lollipop inside. Vivian found a place on her walker to stash it:<br />
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Finally, I thought I'd share some pictures of the grounds of Shriners to give you an idea of what we look at every day.<br />
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Here is where we eat lunch:<br />
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Here is a little bench that we walk to. It's surrounded by trees and plants, and no one is ever around.<br />
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This photo gives you a sense of Shriners' location in the hills. That's all of Salt Lake City below:<br />
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We can see the mountains, too:<br />
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And this is our room from down below. I like that red tree a lot.<br />
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Well, it's quite late now, so I will say goodnight to August 4th and to anyone who happens to be reading. Oh, and please forgive me for being inconsistent with my responses to texts and emails. I appreciate your notes so much, but very often I cannot respond immediately and then am too tired when I've got a moment; also, most of the day I'm limited to my phone's 3G, which is fine for checking fb but lousy for writing emails. I'm all thumbs.<br />
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Good night.</div>
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<br />Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com2tag:blogger.com,1999:blog-4227564875500209626.post-85438928418591390252014-08-03T21:53:00.001-07:002014-08-03T21:53:24.388-07:00Midnight Run
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Today I found the rudest Whole Foods in America. You cannot
believe how these people couldn’t get over themselves. I’ve never been the
victim of more eye-rolling and exasperated huffing in a 15-minute period of
time than I was when I went out to pick up a couple of salads, some soup, and
some g-d Marseilles soap. One guy pretended not to see me so that he didn’t
have to hold the elevator doors for me. Guess what, guy? I got in anyway. A
woman with her daughter looked affronted when we turned the same corner
simultaneously and nearly bumped into each other. When I saw her look of
disdain, I had the impulse to say, “My daughter’s in the hospital right now!” I
caught the words before they left my mouth—not my greatest skill—and I’m glad I
did because I would have seemed like a nut job to her, the indignity she
suffered from our near-collision made all the worse by my insanity. I’m not
even sure what I meant when I thought it. I guess I was thinking to say, <i style="mso-bidi-font-style: normal;">Give me a break, huh, lady? Just a small
effing break.</i><o:p></o:p></div>
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So that was Whole Foods. The salads were good, though, and I
ended up spending $90 on things to make us feel more comfortable here: the
soap, some natural shampoo for Vivian because we have to keep the pin sites
clean, and I don’t want her skin getting battered by sulfates and god knows
what else, some parmesan and white pepper popcorn because yum, some fruit, a
papaya body wash for Vivian, also natural, because of the sulfates and because
she has to shower while in traction and so she might as well smells sweet for
the effort, some gruyere and rosemary crackers, a frozen mac and cheese, some
Annie’s bunny cookies, a box of Graham crackers and two packets of Justin’s
chocolate-hazelnut spread, some blueberry kefir, and some Emergen-C because you
never know. <o:p></o:p></div>
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She is doing quite well, my girl. Today we played two games
of pool, as in billiards, and we kicked around a soccer ball a little—all of
this in the rec room. We ate lunch outside in the shade, which has become our
habit, watched more of The Muppet Show season 3 (also our habit), and played a
video game that Vivian absolutely loves: Leo’s Fortune. Truth be told, she
played the game for about four hours straight. At the advice of a friend whose
son was in halo traction for many months, most rules are lifted during this
period. You want to watch hours of TV? Ok. You want to play a video game
obsessively? Sure. <o:p></o:p></div>
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While she does these things,
whatever they are, she wants Alex and me to be with her and fully attentive.
And we do this for her. It’s intensive parenting, very tiring but also a gift
of sorts. I am always leery of wishing time away, which is why I tended not to
wish us onto the other side of this experience before we started out. I think, <i style="mso-bidi-font-style: normal;">What if whatever’s on the other side is not
as good as what’s in the middle</i>? and so I try to be present in the here and
now. To do that I also have to banish worry, which is another kind of wishing,
and that’s very hard for me to do. So I’ll stick to the facts. Vivian is asleep
as I write this. She has slid a little way down her bed, which is at an angle. I
can see her silhouette, including the halo, and you know I’m not religious, but
it reminds me of a crown of thorns. Mostly when I look at her I see Vivian, and
she is so lovely and vibrant and interesting, and sometimes I notice the halo,
and I get frightened, not of her or of it but of the fact that it’s attached to
her and that she needs it to be attached to her. Her spinal curve is 115º. She
needs this treatment and she needs the surgery at the end of this month, and
she’ll need others. My poor little girl, I think, and then I stop myself
because that doesn’t quite work. She doesn’t seem poor or little at all. She is
just my girl, and she’s doing this marvelous thing, and I am with her, and so
is Alex, and so will others be, and so are all of you in spirit. <o:p></o:p></div>
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We have gotten word that another
girl will be admitted tomorrow, and she will be placed in a halo too. I can
tell that Vivian feels proud and excited that she will be able to help the girl
out. When we talked about it to our night nurse, Vivian got this expression on
her face that I’ve only noticed since we’ve been here. It’s hard to describe; I
wish I could photograph it. I can tell she’s thinking things that she’s not
telling me, secret things but good things, like she’s been pleasantly
surprised. <o:p></o:p></div>
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No pictures tonight because I’m
sleeping in Vivian’s room and have to sneak out to access the wifi long enough
to post this entry and then get right back. I’m wearing a nightgown that I have
no idea why I brought—it’s practically sheer, but not in a sexy way, more like
how a grandma’s housecoat might be threadbare from decades of laundering. So I’ll
have to put on my yoga pants under it and my Bradley Beach t-shirt over it in
order to leave the room. The nightgown I’ll just let billow out in between the
top and bottom. I mean, really: the place is deserted! Tomorrow I will share
some images, but not of this. I promise.<o:p></o:p></div>
<!--EndFragment-->Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com0tag:blogger.com,1999:blog-4227564875500209626.post-79597485689053088902014-08-02T21:54:00.003-07:002014-08-02T21:54:37.958-07:00Day 3There are crickets here. I notice them when I leave the hospital at night, and I'm reminded of New Jersey summers. I used to fall asleep to the sound of crickets every night in the summer, and I didn't realize until I heard them again that I'd been missing that noise all this time.<br />
<br />
Leaving the hospital is strange. It doesn't feel right because Vivi's up there, and as I head to the car I'm widening the distance between us. She sleeps at Alex's half of most weeks of the year, but this is different. Even so, I continue. I make the short drive to the Ronald McDonald House because I know it will do me good to sleep in a real bed, and then I'll be better equipped to help Vivi through tomorrow. It also allows me to write these updates, which help me to process and to let folks know what we're up to.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKFxkR5U4076RPO_tfNDndeawn4QETjqdZL-45yn_KDbQo2AUZ74Sck5KxmfFUPeZKP0krKELecWGUJdtz9oD5W2eeaHdt4_lP7hyrvCqsV9kU_XK2xfbgki7f4sxBH5BfZe4jOpfCIko/s1600/bed.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKFxkR5U4076RPO_tfNDndeawn4QETjqdZL-45yn_KDbQo2AUZ74Sck5KxmfFUPeZKP0krKELecWGUJdtz9oD5W2eeaHdt4_lP7hyrvCqsV9kU_XK2xfbgki7f4sxBH5BfZe4jOpfCIko/s1600/bed.jpg" height="320" width="239" /></a></div>
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The parent bed in Vivi's room. </div>
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By day it's a chair.</div>
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Today was a good day. While Vivian woke up feeling ill, she recovered within an hour, and we managed to give her her first shower. Even better, we had visitors! My cousin Jenny and her husband Leon brought us a few items from the grocery store--tissues, tea, that kind of thing--and LUNCH! The lunch was especially well received because, as we have learned, the hospital is a ghost town on the weekends. Vivian is the only patient on the floor. There are three other families staying in another part of the hospital, and there are two nurses on duty and a volunteer at the front desk and a single cook somewhere in the kitchen, but that's it. Honestly, it's like being in the Overlook Hotel, only without the psychopathy. And snow. There's no snow. Oh, or a hedge maze. Or twins.<br />
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Anyway, Jenny and Leon brought us a feast--sandwiches from Whole Foods, three bags of chips, lemonade and Arnold Palmer (the drink, thank goodness, 'cause that guy can eat)--and the five of us dined outside in the shade. It was lovely. Vivian was proud to show off her walker and wheelchair skills, and she gave Jenny and Leon a tour of the hospital. When we went into the cafeteria, the nice woman who works there gave her a KitKat.<br />
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Jenny and Leon went above and beyond the call of familial duty and stayed with us for FIVE HOURS. Thank you, cousins! You made this day a pleasure and helped it to pass quickly.<br />
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I'd be remiss if I didn't mention that we made the acquaintance of Alison, a 15-year-old girl who unceremoniously cruised into our room on her power-wheelchair, and introduced herself to us with the help of a talking tablet. While Alison cannot say much, she is wonderfully expressive and very funny. We spent quite a bit of time with her today; she even helped us to decorate a calendar for the wall in Vivian's room. And she taught us about boy bands and teenage heartthrobs. (By "us" I mean the grownups because somehow Vivian already knew.)<br />
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When Jenny and Leon were saying their goodbyes, Vivi said, "I wish I could go home." But then a bit later when the night nurse asked her if the halo is as bad as she thought it would be, she said it wasn't. She's an amazing person, my girl. She's working through this in her own way, and I'm grateful that I am able to be with her and to help her along. I know Alex feels the same.<br />
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When our visitors left (with last night's hot pot), Vivian, Alex, and I ate leftovers and watched more of The Muppet Show, season 3 (from 1978). Remember Leslie Ann Warren? Remember Liberace? Pearl Bailey? Alice Cooper? Danny Kaye? They were "it" once, and in Room 11 they are once again enjoying the limelight. And that pretty much ended our day. We helped Vivi from her chair to her bed--it takes us plus a nurse to do that--and we read stories and sang songs. And then I went outside and felt the warm air even though it was night, and I heard the crickets.<br />
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<br />Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com2tag:blogger.com,1999:blog-4227564875500209626.post-20043855011673150622014-08-01T18:32:00.002-07:002014-08-01T18:32:29.841-07:00Ups and DownsGreetings from the Ronald McDonald House. I have taken a short break from the hospital to retrieve some odds and ends I'll need for my night in my daughter's hospital room and to write a quick blog post. (The hospital rooms have no wifi, and while the rec room does, it's seldom quiet enough in there to write.)<br />
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Today went well overall. Vivian used her wheelchair and her walker, and she made two trips to the cafeteria and two trips outside. It was a mild day here, warm and breezy, so it did us all some good to sit in the shade and enjoy the weather. Vivian has shown herself to be a quick study of the wheelchair. Her powers of steering and self-propulsion are impressive! Even so, by the end of the day she was tired of sitting around but didn't want to lie down or walk, either. Eventually, the strain of the last few days caught up with her, and she broke down a little. We have had times like this before, of course, and I was anticipating it now, but, even so, it broke my heart. This is one of the hardest things, isn't it? when your child needs you so desperately and you are able to be strong for her, to get her through it, and then you are left with your own despair.<br />
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I tried to call a couple of people, but no one answered. The irony! I can't tell you how many messages of support I've gotten over the past couple of days, and then when I do try to reach out...no one's home. I'm not upset about it, only amused. It figures!<br />
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So I'm writing this blog entry.<br />
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My room at the Ronald McDonald House is really nice.<br />
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As you can see, there are two beds, and there's a couch in that back corner, a desk a bit closer, and out of the frame but next to the desk is a dresser. There's also a closet and a full bathroom. They call Ronald McDonald House "The House that Love Built," and as hokey as that sounds, you can feel the good-spiritedness and generosity and thoughtfulness that went into building this place.<br />
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Tonight we ordered Vietnamese food for dinner because we knew Vivi would like the pot stickers, fried tofu, and sticky rice. She did. For ourselves, Alex and I ordered lettuce bowls and some chicken-noodle salad. We should have stopped there. But, not knowing how huge the portions would be, we ordered a hot pot, too. Turns out, the hot pot alone was enough to feed 4 people (out of gigantic, non-hospital-issued bowls). We do not have giant bowls, and we are only two people. Said hot pot also turned out to be $35. Aargh! So here we are, in a small hospital room with a small fridge, and enough Vietnamese food for a family of 8. We also spent $75 on dinner. Tomorrow my cousins Jenny and Leon are coming to visit, and we will give them the gift of an untouched and certainly delicious hot pot to go! I hope they like tofu.<br />
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Vivian is having a tough time with the halo; conceptually and physically, it's not an easy thing to get used to. Sometimes, like when we were helping her to get x-rayed this morning or when I was cleaning the pin sites this afternoon, I feel faint myself. It's a lot, y'all--enough to make me assume a Southern colloquialism.<br />
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Well, I would like to write on and on, but I need to gather my things and get back to Miss Vivi. Lots of love to whoever's reading.<br />
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Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com1tag:blogger.com,1999:blog-4227564875500209626.post-56859332174772607962014-07-19T14:07:00.001-07:002014-07-19T14:19:43.228-07:00Beyond!In the nineteenth-century literature I study, people are always writing letters. Often it's a chore, a daily thing: someone will remove herself from the breakfast table to attend to her correspondence. Sometimes people hire secretaries to help them to keep up--this, especially, in Henry James novels. Sometimes it's an act of defiance, as when Harriet Jacobs sends a letter to the South containing false information about her whereabouts in order to protect her hard-won freedom. A secreted or surprise letter can advance a plot, and dead letters--missives mailed but never received--can inform a character, explain his single and repeated utterance, "I would prefer not to."<br />
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Letters, letters, and more letters litter the texts of old.<br />
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The first novels were epistolary, collections of fictional letters. </div>
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It's no wonder.</div>
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Today we send very few letters. We prefer email and texting and Facebook and Twitter and Instagram (although for the life of me I cannot figure out Instagram). Even holiday cards have sacrificed their handwritten content, stock though it might have become, to photos of children and a hastily scrawled "Happy Holidays!" (if that). Really, the only handwritten mail that seems to have endured is the thank-you note, and I'll admit that I sometimes substitute email thanks for written ones.</div>
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I miss the letter, not just the thrill of receiving one but also the feel of writing one. So I've decided to write a letter a day for one year and to write about the experience. </div>
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I'm six letters in, and so far when I've sat down to write I have felt, variously: excited, calm, reflective, introspective, interested, doubtful, rushed, a little tipsy, and blank. The tipsiness was the most unsettling. Turns out that Facebook posts are not the only things you shouldn't write when you've had a couple of glasses of wine. Makes me want to read Hemingway's letters. </div>
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A letter from Hemingway! Steady as he goes.</div>
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Before I began this project in <i>earnest</i> (Hemingway pun!) I made a list of rules for myself:</div>
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<li>The letters must be hand-written.</li>
<li>I must write at least one letter per day, but I can't write more than one with the intention of banking them. </li>
<li>I have to mail the letters, but I can mail them in small batches if, for example, I can't find a stamp or it's a Sunday or it's 10:00 p.m.</li>
<li>The letters must be personal. (I wrote this rule in response to what my boyfriend said when I told him about the project: "You mean letters of complaint?" Ah, how well he knows me. But, no, I mean letters of friendship.)</li>
<li>The letters must be actual letters, not simply notes. I'm going to have to feel my way through this one, sort of like figuring out what separates a long short story from a novella, or a novella from a novel. The line is not as defined as you might think.</li>
<li>It's ok to write to the same person more than once. In fact, since I do not have 365 friends, it's imperative.</li>
<li>My letter can be a response to a letter I've received. Responses count!</li>
<li>I must keep track of dates and recipients; otherwise, all is lost.</li>
<li>I must imagine myself completing this project, or else I will surely give it up at some point. The power of positive thinking, people.</li>
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My letter-writing campaign is not solely an act of nostalgia. It's an effort to improve my focus and sense of calm and to connect with people in an old way. Who knows? Maybe I'll feel alienated, too; letter-writing is a solitary act, and no one is required to write back. I'm sure that on some days <i>I will prefer not to </i>write, and I'll have to force myself to do it. (Apologies in advance to the recipients of those letters.) But write I will.</div>
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Lily Bart, the wayward protagonist of Edith Wharton's 1905 novel <i>The House of Mirth</i> has stationery embossed with a sailboat and the word <i>Beyond! </i>I won't spoil the ending of the novel for you, so suffice it to say that the detail is ironic. All the same, I appreciate the stubborn, even stupid, hopefulness of Lily's notepaper. She plans to go <i>Beyond! </i>and letters are going to get her there. Indeed, Lily's fate rests on correspondence: she comes by a stack of illicit love letters that position her to blackmail the parties involved. Whether or not she submits to the temptation, she will gain and she will lose everything. </div>
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Wharton understood the power of a letter. I think we do, too, even if we've forgotten. As I write, I'll let you know what I rediscover and what I never knew.</div>
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Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com0tag:blogger.com,1999:blog-4227564875500209626.post-44801763692360495522014-07-12T10:22:00.001-07:002014-07-12T10:50:22.426-07:00Kill your darlings.My friend Suzanne emailed me yesterday. Suzanne is a writer, and she'd just gotten word that <u>The Prague Revue</u> not only wanted to publish the essay she'd submitted but in fact <i>had </i>published it online that very day. Trouble is, she'd quoted me in the essay, and she hadn't had a chance to run that by me. Too late now: <a href="http://www.praguerevue.com/ViewArticle?articleId=5845" target="_blank"><b>the essay is out there</b></a>, and our words belong to the ages.<br />
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Here's the thing. The essay is about dead baby jokes. More specifically, it reflects upon a session at this year's Association of Writers and Writing Programs (AWP) conference in which Lucy Corin read a string of dead baby jokes from a work in progress. Here's how Suzanne tells it:<br />
<span style="font-family: 'Times New Roman'; text-indent: 0.5in;"><br /></span>
<span style="font-family: 'Times New Roman'; text-indent: 0.5in;">"In the scene read by Corin, a father
tells the dead baby jokes to his daughter. The girl has </span><span style="font-family: 'Times New Roman'; text-indent: 0.5in;">attempted suicide and
floats in and out of a coma. The father sits by her bed and tells the jokes </span><span style="font-family: 'Times New Roman'; text-indent: 0.5in;">as
a kind of 'magic spell' to ward off imminent death, for, as Corin observed in
her opening </span><span style="font-family: 'Times New Roman'; text-indent: 0.5in;">comments, magic 'shores up against pain via rhythm.' The wisecracks
started out fairly </span><span style="font-family: 'Times New Roman'; text-indent: 0.5in;">innocuously, but grew progressively more disturbing. At
first, audience members, including me, </span><span style="font-family: 'Times New Roman'; text-indent: 0.5in;">laughed. Then we fell silent. The gags
grew more sinister and graphic, and still Corin </span><span style="font-family: 'Times New Roman'; text-indent: 0.5in;">continued. Her voice shook. The
jokes were awful—bloody and baroque and vicious."</span><br />
<br />
A few days after the conference, Suzanne was still processing her experience in the session, and she happened to talk to me about it. Audience members had become uncomfortable, she said. The room was overcrowded and stifling hot, and, what with the material and all, people were feeling woozy, sick, bludgeoned. One woman yelled, <span style="font-family: 'Times New Roman'; font-size: 12pt;">"What are you doing? Why are you
traumatizing your audience like this? What does this have to do with magic or
the intellect?" Others joined in what Suzanne describes as heckling, and Corin's defenders spoke up, too, told the hecklers to leave, encouraged Corin to continue. "Corin," writes Suzanne, "stood silently, head bowed."</span><br />
<span style="font-family: 'Times New Roman'; font-size: 12pt;"><br /></span>
<span style="font-family: 'Times New Roman'; font-size: 12pt;">Suzanne was silent, too, taking in the scene and instinctively siding with Corin. </span><br />
<span style="font-family: 'Times New Roman'; font-size: 12pt;"><br /></span>
<span style="font-family: 'Times New Roman'; font-size: 12pt;">I should also side with Corin. I teach literature, so it goes almost without saying that I do not endorse censorship. I have recently opined against the idea of issuing trigger warnings about literary texts in any widespread or codified way. (Note: I do think that they are warranted in certain situations and cases. If you're not familiar with the issue see this <a href="http://www.nytimes.com/2014/05/18/us/warning-the-literary-canon-could-make-students-squirm.html" target="_blank">NY Times piece</a>.) As a rule, I value literature and the experience of reading or being read to, whatever that experience may include. Even so--or should I say, <i>of course</i>, because I am often forced to interrogate my closely held beliefs--I found myself telling Suzanne that Corin should never have read that excerpt from her work. A part of me even wondered if she had the right to write it. </span><br />
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<span style="font-family: 'Times New Roman'; font-size: 12pt;">"Andy! What the FUCK?"</span></div>
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<span style="font-family: 'Times New Roman'; font-size: 12pt;">In her essay "On Dead Baby Jokes and Art," Suzanne identifies me as "a novelist friend, Bea." (Finally! An alter-ego I can embrace.) She recounts our conversation:</span><br />
<span style="font-family: 'Times New Roman'; text-indent: 0.5in;"><br /></span>
<span style="font-family: 'Times New Roman'; text-indent: 0.5in;">"I described this panel to a novelist
friend, Bea, whose own child survived a near-fatal congenital </span><span style="font-family: 'Times New Roman'; text-indent: 0.5in;">illness as an infant. 'I would have walked out, too,' she said. 'You have to get this stuff right, </span><span style="font-family: 'Times New Roman'; text-indent: 0.5in;">or
it’s immoral.' She laughed sheepishly. 'I guess you could say I believe in
taboo.' Bea’s </span><span style="font-family: 'Times New Roman'; text-indent: 0.5in;">uneasy assertion reflects the mixed feelings of many readers and
writers; we champion our right </span><span style="font-family: 'Times New Roman'; text-indent: 0.5in;">to free expression, yet, in the name of
sensitivity and taste, we want limits placed on that speech. </span><span style="font-family: 'Times New Roman'; text-indent: 0.5in;">Indeed, the
ethical stakes are real: When artists seize on any one of a number of private
and </span><span style="font-family: 'Times New Roman'; text-indent: 0.5in;">public traumas, from dead babies to the Holocaust, they risk exploiting the
real pain of real </span><span style="font-family: 'Times New Roman'; text-indent: 0.5in;">people. For Bea and many others, some subject matter should
not be freely available to the artist </span><span style="font-family: 'Times New Roman'; text-indent: 0.5in;">merely because it strikes her as 'interesting.'”</span><br />
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<span style="font-family: 'Times New Roman'; font-size: 12pt;">Suzanne goes on to identify what is "thorny" about my reaction, and she's absolutely right: my objection makes sense in the abstract, but in practice it raises the question, "W</span><span style="font-family: 'Times New Roman'; font-size: 12pt;">ho gets to decide which fictions lie outside
the bounds of good taste?" </span><br />
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<span style="font-family: 'Times New Roman'; font-size: 16px; text-align: start;">I have no interest in claiming Jesse Helms as my homeboy.</span></div>
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<span style="font-family: 'Times New Roman'; font-size: 16px; text-align: start;">(Artist unknown, accdg to politicalgraphics.org)</span></div>
<span style="font-family: 'Times New Roman'; font-size: 12pt;"><br /></span>
<span style="font-family: 'Times New Roman'; font-size: 12pt;">I readily see and accept this argument. Yet even after talking with Suzanne and reading her thoughtful and nuanced essay--and I encourage you to read it, too--I still suspect that, had I been in Corin's audience, I would have left the room early into her recitation of the fictional father's jokes. I would have done so not because Corin violated standards of sensitivity or taste but because she seems to have gotten it wrong. No parent would do what that father does. It's inauthentic. </span><br />
<br />
<span style="font-family: 'Times New Roman'; font-size: 12pt;">According to Suzanne, Corin said at the start of her reading that magic "shores up against pain via rhythm." About that she's right. </span><span style="font-family: 'Times New Roman'; font-size: 12pt;">When I sat beside my daughter's hospital bed, I uttered incantations to restore her: </span><i style="font-family: 'Times New Roman'; font-size: 12pt;">Please save my baby; please let her live</i><span style="font-family: 'Times New Roman'; font-size: 12pt;">. I did not use humor; I did not use irony; I did not tempt the fates by conjuring the deaths of babies. Who risks a misreading at a time like that?</span><br />
<span style="font-family: 'Times New Roman'; font-size: 12pt;"><br /></span>
<span style="font-family: 'Times New Roman'; font-size: 12pt;">Besides that, who tries to manage his own pain before having saved his child from hers? And why did that daughter, that fictional daughter, try to kill herself, anyway?</span><br />
<span style="font-family: 'Times New Roman'; font-size: 12pt;"><br /></span>
I remember now that my own father visited my daughter's hospital bed. Notwithstanding the evidence of a single photo of him gazing at her compassionately, I know that had I left him alone with her there's no telling what he would have said. Flash back to my own childhood, to my father's Helen Keller jokes, Jesus Christ jokes, Hitler jokes, adoption jokes, disease jokes, boob jokes, penis jokes, death jokes. Jokes, jokes, none of them funny, all of them crude, many of them cruel. What rhythm was he making to shore himself up against pain? And why did his poetry, his prose, his humor inflict so much pain upon others?<br />
<br />
So Corin got it right, yes, she probably did. People heckled her for it, and that means that they don't tolerate a father like that, or that they don't believe he exists, or that they don't want to be reminded that he does. They want to protect the babies, the dead ones, the live ones, and the ones hanging in between. Probably Corin does, too, and so she wrote this man who, Suzanne argues, "For a while...could speak out of the monster's mouth and assume its destructive power as his own. But all the time, he said the jokes in a frightened voice. Within the clammy costume, he was still human, still small."<br />
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<!--StartFragment--><span style="font-family: "Times New Roman"; font-size: 12.0pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"> </span><!--EndFragment-->Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com0tag:blogger.com,1999:blog-4227564875500209626.post-73060659376110595892014-06-29T12:18:00.001-07:002014-06-29T12:20:03.306-07:00Making It HomeHaving returned from a 10-day sojourn to the East Coast to visit family and friends, and having slept for 10 hours in my own bed, I'm enjoying the return to my morning ritual: some coffee (French press, how I've missed you), a corner spot on the green couch, the cool morning air impossible to come by in other parts of the country at the end of June. I've got home on my mind.<br />
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It's a complicated thing, home: an idea, a time and a place, a collection of experiences. Like the experience of rounding the corner and seeing your lawn, two-weeks neglected, dandelions knee-high and facing the sun, and wondering if your neighbor with the addiction to mowing and leaf blowing sees in those yellow faces a children's choir heralding your return. He certainly does not, and your knowledge of this fact forces you to reassume the weight of ownership. You'll have to mow your lawn today, and you'll have to stock your fridge, and you'll remember that the windows need washing--but how do you remove storms, and does OxyClean leave streaks? The trim needs painting and the fence needs scrubbing and probably some painting of its own. And don't get me started on the room that is not well lit enough to serve much of a function at all and so is both catchall and eyesore. </div>
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That stuff is more house than home, but the two intertwine. One morning several summers ago, the year after my husband moved out, I stood at the sliding glass doors in my kitchen and watched a squirrel rip out the fiber fill of a cushion on my patio furniture. I had seen the table and chairs throughout the seasons before, of course I had: I had walked past them to take out the garbage and recycling; I had observed my dog peeing on them in the dark before bedtime; I had seen them cleansed with rain and dusted with snow. I must have thought, "I need to put that furniture in the garage," but I had never followed through. And then in early July I saw the squirrel busy itself with my cushion, and I felt angry, offended even. That creature was making its nest out of the remains of my own. I shooed the squirrel and put the patio set away, and then I looked around. For a year my house had stood stagnant. The back yard was overgrown. On the floor of the guest room lay the detritus of the moving-out day: empty shoeboxes, hangers, stacks of papers, some books. (When we'd divvied up our possessions, had we determined that those were mine?) On two walls of our bedroom was the green paint selected by me and, because I was pregnant at the time, applied by my husband and mother. "Happy Camper," it was called, but it was always too dark.</div>
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Toward the end of that summer my mom came for another visit, and together we cleaned and repainted, for one cannot thrive inside a tomb. </div>
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Olivia Clemens knew this. She was Mark Twain's wife, and oh, how he loved her. When I was a research assistant in graduate school I visited the Bancroft Library and read their correspondence. In the letters, he calls her "Livy" and "Dearest Livy," and he suffers from how much he misses her and their children.<br />
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Olivia Langdon Clemens in 1872</div>
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From the collection of The Mark Twain House & Museum, Hartford, CT</div>
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Two days ago I was at The Mark Twain House in Hartford, Connecticut. Such a house. According to the docent, it was a house for entertaining, a house intended to shine at night: the walls stenciled in metallic paint would have danced in the light of the gas lamps, he said; fireplaces would have been lit, their flames refracted by candelabra crystals and reflected in giant mirrors.<br />
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The Mark Twain House</div>
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It was a house for the daytime, too, for the Clemens girls grew up there. You can see their bedrooms, their school room, and their toys, and you can touch the banister against which they used to crouch when eavesdropping with glee upon their parents' conversations with guests, their father performing all the while because he knew the girls were listening in. The docent asked my daughter how old she is. "Seven," she said, and we learned that all three of the Clemens daughters had been seven inside that house. "What do you think of their toys?" he asked. My daughter shrugged and said, "Good," too shy to tell him what she'd told me, that she'd like to play with those toys.</div>
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She couldn't, of course. Aside from the banisters, we were not allowed to touch anything in the house. Here were the children's possessions--blocks, a massive doll house, a baby carriage--scattered and stacked as if recently used by the Clemens girls and ready to be taken up again, but in truth long forgotten, unearthed solely to form a tableau of life as it might have been, as it must have been in the Hartford house.<br />
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Twain's writing corner</div>
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In Twain's billiard room I felt an urge similar to the one my daughter had had. I wanted to sit at the desk in the corner where Twain had written most of his great books. Across the lawn in Harriet Beecher Stowe's house I had dared to touch three fingers to the table at which Stowe had written <i>Uncle Tom's Cabin</i>, but the Twain docent was more austere than the Stowe guide had been, and besides, Twain's table was out of reach. It was in the billiard room--the final stop on the tour--that the docent told us the story of Susy Clemens, how at the age of 24 she had contracted spinal meningitis while her parents were touring in Europe, and how she had died in this house. Livy Clemens had tried to get home in time to tend to her daughter or else to say goodbye, but travel was slow then, and she did not make it in time. According to our docent, Olivia Clemens never entered the house again.<br />
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At the Twain house you can see Livy Clemens's nightgown, mildewed and yellowed yet preserved, and you can buy a crisp, white facsimile for yourself to wear at home. You can stand in the doorway of Susy's bedroom and see, I suppose, the very bed she died in. You can smell pipe smoke. In your own home, too, you can find remnants of those who left the place behind. You can leave them untouched, or you can rebuild.<br />
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Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com5tag:blogger.com,1999:blog-4227564875500209626.post-57114540534288523412014-06-17T11:39:00.003-07:002014-06-17T13:28:40.804-07:00Finding Myself on Mt. Everest<div class="separator" style="clear: both; text-align: left;">
I've been watching season two of a years-old Discovery Channel documentary series about people who climb Mt. Everest. Some of the climbers are mountaineers, people who have spent years honing their skills, ever with an eye on Everest--the highest of the <b><a href="http://en.wikipedia.org/wiki/Eight-thousander" target="_blank">eight-thousanders</a></b>--as the ultimate test of their abilities and, should they reach the summit, the ultimate accomplishment. Others are essentially tourists who have paid $50,000 to be ushered up the mountain. The latter type is a problem on Everest, as reported by Jon Krakauer after the disastrous 1996 climbing season and by others more recently. Through its coverage of these mountain tourists, the Discovery show highlights the indecency of the commercialization of Everest. (You can read about the related experiences, tragedies, and injustices of and against Sherpas and Nepalese guides <b><a href="http://www.amazon.com/Buried-Sky-Extraordinary-Climbers-Deadliest/dp/0393345416/ref=tmm_pap_title_0?ie=UTF8&qid=1403020326&sr=8-1" target="_blank">here</a></b>, <b><a href="http://en.wikipedia.org/wiki/2014_Mount_Everest_avalanche" target="_blank">here</a></b>, and elsewhere.)</div>
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Tim from L.A. failed to summit the year before and is back again in 2007, determined to meet his goal. As portrayed on the show, he is a foolish man, a blowhard, a kind of white American male that gives white American males a bad name. Tim often faces the camera, pretends to throw something at it, and yells, "Bam!"<br />
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Not Tim.</div>
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When you climb Everest, you have to do it in stages to adjust to the altitude: up a couple-thousand feet and then down, and then up a few-thousand feet higher and then down, and so on. It takes about two weeks to reach the top. On his final ascent during the 2007 season--in the high climes of the mountain known as the "Death Zone"--Tim slips and breaks his right hand in two places. Scaling a mountain without the use of a hand (and in great pain) is a tall order, but Tim is a self-described "tough guy" and, when his guides, in rather a sneering way, remind him of this fact, he rallies. He's scared, though, and rightly so: as he ascends, the ropes are to his left, so he can hold on; but as he descends, they will be to his right. What will he do? The expedition guides in charge of Tim work out those details for him and, through some complicated rope work, risk their own lives getting the client up and then getting the client down again. As they do this, the disgust of Russell, the British expedition leader patched in by radio, is palpable. It's impossible to tell if Russell is more disgusted with Tim or with himself for enabling someone like Tim to reach the summit and come back again alive.<br />
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Also from L.A. is Becky, a journalist in her mid- to late-40s who caught the Everest bug from Tim when she interviewed him after his first attempt. She's pretty woo-woo but is also a black belt in karate--so, you know, no slouch. Even so, she showed up at Everest without ever having fastened crampons to a pair of boots. This should not be.<br />
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It took me about 3 seconds to find this image on petzl.com.</div>
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Come on, Becky.</div>
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As they plod up the mountain, both Tim and Becky attribute their success to personal strength. Remember, Tim is "tough"--in fact, the toughest guy he knows--and as for Becky, well, she sets the bar high and never backs away from a challenge. Pushed to her physical and emotional limits, she considers quitting but does not because "I don't know how."<br />
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These two people are driven by vanity, but, as people will do, they avoid confronting this fact, at least on camera. For example, when Russell kicks Becky off the expedition because her level of inexperience puts the other climbers at risk, she laments how "cold" it is on Everest. "And I'm not talking about the weather," she adds. When Tim reaches the summit, he waves an American flag (with his good hand) and yells, "Yeah! Old Glory, baby!" never pausing to consider that it was a Tibetan and an Australian who hauled his ass to the top, in this way rendering his achievement particularly American but not in the way Tim means.<br />
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More haunting than the combined effect of Tim and Becky's stories are those of legitimate climbers David and Fred. These men climb Everest to exorcise demons, David's acquired through no fault of his own, and Fred's apparently called to roost through his own misjudgment.<br />
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David was abused as a child, and the first time he summited Everest he did so in the name of abused children everywhere. He meant for his ascent to the top of the world to show these kids that they are not doomed always to be victims of circumstance, that they can, quite literally, rise above. He confesses that he thought his first summit would "be enough" to release him from the hold of his past. "But it wasn't," he says.<br />
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At this point, I imagine David's wife. Does she see? Before his second attempt did she plead with him not to return to the mountain? Did she say, <i>Think of <u>our</u> children?</i> I wonder, too, if David sees, if he realizes that no amount of summits will ever be enough, and I will him off the mountain and onto a therapist's couch. But this is my way.<br />
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In the 2007 season David intends not only to summit Everest again but also to do what has never been done: to descend the opposite (the South) side, and then to climb the South side and descend the North, basically, to perform a double-ascent/descent. If he accomplishes this, David believes, he will <i>really </i>show the children that they can overcome.<br />
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Initially, he wants to go it alone--of course he does!--but Russell convinces him to bring <b><a href="http://himalayanexperience.com/about/climbing-sherpas/phurba-tashi#sthash.G7y0G2Lt.dpbs" target="_blank">Phurba Tashi</a></b>, a highly accomplished Nepalese guide who has summited Everest many times, once even three times in a season. It is a good thing David complies: they find that no one has yet laid fixed lines at the top of the South side, and so Phurba must do so. Ironically, it is Phurba Tashi who guarantees David's survival of the South side Death Zone, and it is Phurba Tashi who drives David forever from the mountain. Upon reaching camp on the South side, David decides to abandon his goal and, further, to retire from mountaineering. By way of explanation he says, Phurba Tashi "is in every way my superior." David knows that had the two of them reached the top of Everest for a second time, Phurba would have had to step aside to allow David the honor of being the first, and solely because David had paid him to do so. David refuses to continue to play a role in the farce.<br />
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David is a man of great integrity: he is exceptional and admirable. And in another way, he is like the rest of us, pitiable, deserving of pity. Here is a man for whom, perhaps, nothing will ever be enough, a man who climbed and descended Everest two times because it took two times to prove an abusive parent right: "David, you are in every way my inferior." <br />
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Fred is a doctor who, during two separate (failed) summit bids, nearly died on Everest. A photo that the Discovery editing team delights in flashing to viewers shows Fred's nose blackened by frostbite. It has taken two years for Fred to recover sufficiently to try again. The last time around, he diagnosed himself with pneumonia, so in 2007 he must also understand the nature of his suffering. Repeatedly, Fred refers to the summit as "the albatross," an allusion to Samuel Taylor Coleridge's "Rime of the Ancient Mariner." In that poem, an ancient mariner incurs a Sisyphean punishment for killing an albatross and dooming his ship: he must wear the albatross around his neck and forever tell the story of his folly. And here is Fred, revisiting his own past, certain that if he reaches the top, he will shed the albatross and transcend or relinquish his story. He makes it to the summit. Later, when he tells the cameras about it, he references the albatross again, and he cries.<br />
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I am an armchair enthusiast. Never in my life will I climb a mountain, and gladly so. But in the stories of those who do, I find myself. I'll bet you do, too. Most of us, thank god, tend not to yell "Bam!" or to say we don't know how to quit--and if you do either of these things, you should probably stop--but we have been every bit the imbecile and the outcast. We have been victims and victors, too, even if not on the grand scale of David and Fred. We are all of us haunted by stories, our own and those of others.<br />
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<br />Tiffanyhttp://www.blogger.com/profile/02654222301622926920noreply@blogger.com2