Wednesday, May 25, 2011

Come in, she said, I’ll give you shelter from the storm

Photo by Gary Lezak

Around 11:00 a.m. this morning, my mother called me at the office and said, “You probably already know this, but there’s a tornado headed straight for you.”
Her words didn’t even have time to register with me before the sirens started going off.

“Oh,” I said almost nonchalantly. “There’s the sirens. Guess we’ll be heading down to the shelter soon.”

“Call me when it’s over, okay?”

We said our good-byes and hung up. Then I turned to my computer and IM’ed Patrick. Since he’s had problems in the past with passing out, we check in with each other throughout the day. If he doesn’t respond to my instant messages, I call him. I let him know that a tornado had been seen on the ground and he should get himself down to the basement. We said our good-byes, and, as always, our I-love-yous.

In Kansas City at this time of the year, the tornado sirens get tested on Wednesdays. Most people ignore them altogether. But between what’s happened in Joplin and our own spotty weather, I could hear people outside in the hallways asking, “Are they testing?”


I didn’t hesitate, but grabbed my purse with my cell phone and an ancient Palm Pilot freshly downloaded with the Song of Ice and Fire series, and my flash drive with all my writing on it. I also made sure I had my migraine medications. As I look back on my choices now, I am reminded of that Sherlock Holmes story where Holmes, (that magnificent, sexist bastard), remarks that if a woman is faced with an emergency, she will grab that which is most precious to her—children, if she has them. Stuff, if she doesn’t.

So, with that stuff most precious to me, I went to join the crowd in the stairwell. As I did, I looked around for my brother and didn’t see him. My brother works part-time for MCC as a videographer. I saw his supervisor, Mark, behind me on the stairs and shouted up to him, “Where’s Matt?”

“I think he went on ahead!” came the reply.

There was nothing to do but go on and hope that Mark was right. It was with surprisingly little complication that we, (mostly staff, but a few students, and the children from the Plaza de Ninos daycare) arrived at the Education Center building. Spring semester is over; the summer semester has not yet begun, so there are very few students on campus at the moment. Today, we were glad for that—it meant fewer people in harm’s way.

Though, God knows, we would’ve had the room for them.

All Metropolitan Community College campuses have FEMA shelters that can house a considerable number of people. I assume they all have similar capacities, but I can tell you specifically that Penn Valley’s shelter can hold anywhere from 3,000-5,000 people. They are not just for students, staff and faculty either; they are meant for the community.

One of my co-workers was at a meeting at the Kansas City Public Library Downtown, where people took shelter in their underground vault (the building used to be a bank). Fortunately for the children, there’s a movie screen there so they could watch films. (We put the daycare kids in a classroom to watch Dora the Explorer.) The security force that patrols Downtown, which Patrick and I refer to as the Bumblebee Squad for their bright black and yellow vests, were dragging homeless people in off the streets. I heard that several businesses throughout the area threw open their doors to people caught in the storm. We should have been doing that. I hope in the future we will find ways to raise awareness of the resources we have available to those in need.

Back at the shelter, I found my brother almost at once, which was a relief. Once security got everyone inside, the place went into lockdown. The shelter is essentially one big bunker, with reinforced steel doors and no windows. There is almost no cell phone or Wi-Fi reception because of the thickness of the walls. Every television was tuned to the weather. People crowded around them to watch as the live Doppler showed ominously swirling formations hovering over the entire metropolitan area.
Then I saw footage of funnel clouds forming at 435 and State Line—just a few miles from my house.
I could stand there and hang on to every word the weathermen were saying and think about how helpless I was, or I could walk away. So I walked away.


It was not quite 11:30. I tried to settle into a classroom with Matt and some of my co-workers and actually succeeded in striking up some conversation, though you had to shout to be heard over the alarm. People kept wandering by, waving their cell phones around like magicians trying to perform some arcane ritual, in search of signal. Invariably, all conversations were of tornado experiences. One of my co-workers (and one of my favorite people), Barb, recounted how when she was a teenager she saw a tornado touch down at a high school and blow the windows out, “like a bomb detonating.”
From where I was sitting, I had a clear view of the auditorium and the LCD screens suspended from the ceiling, which had the Doppler going at all times, and the news feeds at the bottom. Out of the corner of my eye, I saw, INDEPENDENCE, 12 MINUTES.

As I sat there, I kept thinking about Reading and Chickasha and Joplin.

Nancy, another woman I work with who has two young children, came in near tears. Her daughter goes to an elementary school in Lee’s Summit, newly renovated from an old horse barn. The renovation was touted for its green design—a design that, sadly, does not include a basement. I heard several people remark that their children’s schools do not include a basement or shelter, which is really surprising here in Tornado Alley. But, come to think of it, none of my elementary schools had basements. My Catholic school had a boiler room, but it was hardly big enough to accommodate the entire student body. Patrick said that none of his schools in Kansas had basements either.
No, when it came to tornado drills—you either crawled under your desk, or you went into a bathroom or hallway. You hunkered down. That was it. That was the drill. Duck and cover, in other words.






I think, my cousin lives in Independence. Her little girl goes to school there. Poor Nancy. I am starting to have an inkling how she feels—how my mother must feel. Both my brother and I are here. My step-father works just two blocks east of here. My mother’s entire family is sitting right here in the path of the oncoming storm. I think of my sister, down in Oklahoma, who’s probably frantic. And I can’t call them or text them to tell them that we’re here in the shelter, waiting it out. Bored, hungry, grumpy, but otherwise okay.


A tornado touched down this afternoon on 31st and Main, one block east of campus—equidistant between Penn Valley and KCPT, where our step-father works. Another one touched down at 435 and Front Street, a few blocks from our Business & Technology campus. Yet another tornado touched down in Claycomo, a small suburb that borders the town where I went to high school—the town where my parents still live.
But it was all just touch and go. We were spared any damage.


I take out my Palm Pilot and try to read, but I can’t read. I can’t sit. I’m trying to imagine what’s going on outside—I’m trying to listen, trying to hear something, but I can’t hear anything. I’ve always heard it said that a tornado sounds like a freight train coming down the tracks. But all I can hear is the roar of hundreds of people and that damn alarm. It’s noon now and I’m starving. There’s no vending machine here, nothing to eat—no emergency provisions were made for that. I want to pace. I want to prowl. The lizard brain has taken over—the lion brain. I’m on hospital time now. I feel the beginnings of a migraine starting on the left side of my head. I have the beginnings of my own perfect storm. I don’t want to take the pills though, not without food. Please God, don’t let me vomit here. Don’t let me get a migraine here. I don’t know if I can stand it.


I rummage in my purse and pull out my notepad and I write,

I’m going to count my blessings:
Thank you, God. I am as safe as it’s possible to be in this situation.
Thank you, God, for letting me have my brother here with me.
Thank you, God, for letting me be surrounded by respected colleagues and beloved friends.

A student in the corner sleeps propped against a stack of folded-up tables. I envy her.


Thank you, God, for giving me the opportunity to speak to my husband and mother.
Thank you, God, for this pen and paper, that I might calm my thoughts.
Thank you, God, and forgive me for my selfishness.


And if You could do something about that fucking recording, that would be swell.


We emerged about 1:30 p.m., some two and a half hours later, to brief sunshine. I have my sunglasses on already, the migraine flaring in my skull.

“Look, the sidewalks are dry,” Barb points out as we walk together back up to our building. “How did that happen?”

“Out came the sun," I said, "And dried up all the rain."

Tuesday, May 24, 2011

Dead Reckoning: I'm gonna wash that vamp right outta my hair

Warning: Here be spoilers.

All right. It may surprise some of you that for my first ever book review for this blog, I have opted for Dead Reckoning, the eleventh book of Charlaine Harris’ Southern Vampire Mystery Series since I am always going on about what a literary snob I am. But I love Sookie, and I love True Blood, (though I love them as separate and distinct entities—that can’t be emphasized enough). However, despite my usual pretensions, I have a deep and abiding appreciation for fully realized characters, as well as humor, local color, and all the other goodies which the SVM are chock-full of.

Also, Charlaine Harris’ story, while not quite the writer fairy tale that, say, J.K. Rowling’s is, still warms the cockles of my ambitious little heart. For years, Harris toiled away writing paperbacks, making a modest living in relative obscurity until Alan Ball came along on his white horse and optioned her series for HBO, and now she lives in the white tower of New York Times Best-Seller Land, and gets invited to Comic-Con, and does cameos on her own show, which means she got to meet Alexander Skarsgard—or, more importantly, Allan Hyde (What can I say? I like ‘em pocket-sized).


So—on to the review.

The plot of Dead Reckoning—oh, as usual, the main “mystery” is ridiculous and paper-thin and, really, do we need an excuse for vampirey shenanigans? Sam Merlotte’s bar gets firebombed. Sandra Pelt shows up and stirs shit. Sookie is dealing with her fairy kin, as well as uncovering some old and uncomfortable information about her grandmother, Adele. On the vampire front, Bill is still recovering from war wounds, and Victor Madden, minion to the vampire king Felipe, is plotting against Eric Northman. And Eric and his second-in-command, Pam, are on the outs. Just another day in Bon Temps, really.

But the plot has only ever been, for me, a pretext for settling into this world—a world of characters that I have come to care deeply about.

Never let it be said that Charlaine Harris will be remembered as one of the great stylists in literature. But she achieved something akin to genius in creating Sookie Stackhouse. As all the stories are told from Sookie’s point-of-view, Harris has achieved something authentic and one-of-a-kind. As a person, Sookie is funny, honest, and down-to-earth; she knows herself and what she wants. She makes mistakes and tries to atone for them. In a world populated by vampires, werewolves, shapeshifters, demons, witches, and even maenads, she is – despite her bit of fairy blood and her self-described ‘handicap’ – our token human; the stabilizing force by which we, as the reader, navigate the fantastic. And I can’t think of anyone I’d rather have at the helm.

In addition to Sookie, Harris has captured a world that is very close to my Midwestern home: Wal-Mart sundresses and Tweety Bird T-shirts, aluminum fold-out chairs, Sonic Blasts, Hairagamis, worn-down cars and pick-em-up trucks with balding tires and aqua swirls on the sides, work boots, trailers and peach tea and chicken fried steaks. Similarly, the other human characters are achingly real—Terry and Andy Bellefleur, Bud Dearborne, JB and Tara duRone. Folks so real, I can smell flannel and sweat.

So Dead Reckoning has left me feeling a bit cheated—I got neither enough of the characters I care about, nor the details that I have come to crave in a Sookie Stackhouse novel.

Most of the issues I had with Dead Reckoning are just lazy writing. For example, Sookie has suddenly started calling the two-natured “twoeys.” When I first saw that, I was all, “The hell? Where did that come from?” I’m all in favor clever shorthand, but that’s just awful. I don’t like that the author can’t even be bothered to keep her own terminology consistent.

Well-established characters are not behaving consistently either. Suddenly, Pam is in love with a human named Miriam—so much that she wants to turn Miriam into a vampire. I’m not saying that it’s far-fetched for Pam to be interested or attracted to a human, I just find it unlikely for her to be so desperately in love with anyone that fast. Pam, while not without her redeeming qualities, has always been depicted as a stone-cold bitch. Miriam does happen to be terminally ill, so Pam has to act quickly or risk losing her forever. I wish Harris could have taken the opportunity to reveal more about Pam’s softer side (if it exists), or that she would have actually depicted the progression of the relationship between Pam and Miriam. As it stands, I don’t buy it. It just seemed like a convenient excuse to make Pam and Eric fight.

Along with Miriam, we get her brother, Immanuel, a human hairdresser—and another heapin’ helpin’ of some uneven characterization. Sometimes he’s nice to Sookie, sometimes he’s not. Which is it? Again, I know that real people can be like that, but again, this just smacked to me of poor writing. Besides, Sookie is a telepath. Shouldn’t she be better clued in to how people feel about her? Or maybe Harris just has her characters behave in whatever way is most convenient to the plot at the time. I prefer characters who act like people.

And speaking of convenient plot devices, Mr. Cataliades, demon lawyer, is apparently something of a fairy godfather figure for Sookie. In addition to—er, the fairy godmother she already had . . . come to think of it, she has a whole fucking fairy family . . . and she has her friend, Amelia, who’s a witch, who regularly bails her out of trouble . . . and Sookie suddenly has more deus ex machinas than the wicked witch had winged monkeys. I’m pretty upset over this one because I love Cataliades. I’ve always thought he was a fascinating character. Something better should’ve been done with him. Wasted characters like that make the writer in me weep, and I really, really hate the idea of him standing over baby Sookie’s bassinet like the three good fairies in Disney’s Sleeping Beauty, lamely bestowing gifts on the blond infant. Seriously, Harris?

In light of this, I’m starting to think – and it pains me to say this – that the series as a whole is starting to suffer from too many characters. Or, more accurately, that Harris doesn’t choose her characters wisely-- who to cut and who to keep. I’m a huge fan of ensemble casts, but they are difficult to maintain. The story arcs have to be planned meticulously, or you have these characters standing around with nothing to do, or worse, you start shoe-horning them into silly subplots that don’t really go anywhere. Characters really can just die, or go away and not come back. Really. (*cough cough* Sandra Pelt *cough cough*) If Harris hadn’t brought her back, I could’ve died happy. Meanwhile, I feel like there’s this moving walkway of characters that pass by so quickly, I can’t be arsed to get to know them, because-- why bother? Ocella? Alexei Romanov? Bellenos? Niall? Claudine? The list of characters that have come and gone in this series is really staggering. Some of them I was happy to see go. Others, I can’t fathom why they stick around. Still others, might've been pretty cool to actually GET to know, y'know?

Overall, I was so disappointed in this book, I thought it would be the last one I was going to read. I became downright disgusted when Sookie finds a letter from her grandmother explaining about her relationship with Fintan, the fairy, basically rehashing information that’s been covered in previous books, and I thought, why, WHY are we going through this again?

I was on the verge of closing the book when Sookie found the gift Fintan gave to Adele—the cluviel dor. It’s an item upon which Sookie may make one wish. (See what I mean about deus ex machinas?) Cluviel dor, which is an anagram for “lucid lover,” or “I do love Eric”-- I still haven’t decided how I feel about that, but while we’re on the subject, let’s talk about Sookie and Eric.

I find it interesting that over the course of eleven books, Eric, Sam and Bill are the three longest-running relationships that Sookie has. I assume Harris has done that on purpose—keeping her options open as to which non-human Sookie will ultimately end up with. But now that Sookie and Eric have hooked up, it seems that Harris doesn’t know what to do with them. They don’t interact outside of sex, or Eric acting like a possessive jerk. He’s a bit of a cipher—much as Bill was in the earlier books. I don’t really see an actual relationship occurring here--which, how could there? I imagine a millennial age gap really makes conversation stilted.

Maybe as a feminist, I am fundamentally at odds with certain aspects of the vampire romance. I have never liked Bill, and I have started to dislike Eric—and for the same reasons. For that matter, I dislike him for the same reasons I despise Edward Cullen and Angel. They’re paternalistic, possessive and condescending, and I would expect creatures who have lived more than a century to be a bit more evolved.

I don’t put the blame entirely on them. I like my heroines self-actualized, too. What I’ve always loved most about Sookie was that she’s always been absolutely uncompromising where her relationships with men (dead or otherwise) are concerned. But in the last two books, Sookie has been alarmingly subdued. I realize that part of this is due to some of the trials and tribulations that she has faced—and survived. She’s been forced into some tough positions. She’s had to drink Eric’s blood more than three times which has forged the notorious blood bond, which means that the two of them are constantly aware of each other, and that she is, for all intents and purposes, addicted to him.

And that was the saving grace of this book: Sookie has found a way to shake off Eric’s influence—and no, it wasn’t by using the cluviel dor, as I expected it would be. I’m sure I’m reading way too much into this – it’s not a work that’s heavy into symbolism – but Sookie cut her hair in this book, which, to me, is a powerful symbol of feminine liberation and self-assertion. If I had a daughter, she’d be the sort of heroine I’d want my daughter to pattern herself after.

When Sookie started going all mopey and dependent -- in short, going the way of Bella Swan -- I became disenchanted . . . but now that she’s her own woman again, I cheered. And Charlaine Harris has kept this reader, for at least the next installment, anyway.

Sunday, May 22, 2011

Apocalypse Picnic

Today was a rare day for everyone.

We can joke all we like about the World-Enders, but I will admit to whistling past the graveyard. I figure that all such predictions have at least a shot at being right. And if they had been right today, I would’ve been boarding a short bus straight to Satan Academy.
But wrong they were because, well-- here we are.

In fact, today was as far from apocalyptic as it is possible to be, at least in our little corner of the world. After weeks of rain and unseasonable chill, we woke to sun, blue skies, and temperatures already edging towards the eighties.
But that’s a small thing compared to the fact that Patrick, for the first time in weeks, was feeling good. So we were determined to get out and enjoy the day—we decided to go out to the City Market, and maybe have a picnic lunch.

Taste Memory (an excerpt)

At the grocery store, I wander up and down aislespiled high with fruit, icy caverns of florescence
it is the produce that looks unnatural.
No odors of earth, not even by the crates of mushrooms

or among the root vegetables, great bearded purplish heaps of turnips

hyper-sanitized in plastic bins, disguising origins.Subtle stickers whisper when you turn the apples over,
Producto de Ch
ile. New Zealand oranges.

Taste is the great underrated sense as a bearer of memory,
its importance secondary to the necessity of nourishment.

I am reminded of the old dim markets I once walked,

tagging along after the women of my family,
in one shop and out another, lugging our bags and carts.

We knew them all,
the florid German butcher,
his stereotypically v
ast belly barely sheathed in a stained apron,
looming behind
the scales,
his brutal fascinating displays:
pig’s feet and ears and snouts, beef tongue and head cheese,
a cracked concrete floor wi
th rusted drains.
He considered
me over the counter whenever I came in
before whispering to my grandmother,
"You know, I have five sons."

The Mexican grocers o
n the Boulevard where we bought
masa by the buckets, cornhusks for our tamales.
We knew the baker
s, Reina’s pan de huevo,
bars of Ibarra’s mulled
the day-old bread store o
n the Kansas side,
steeped in sugar and vanilla smells
dyed icings and toothsome little cakes
that came in pastry boxes, cellophane lids crackling.
Cinnamon rolls, and plain cake donuts
a staple in my grandmother’s home,
to be taken with coffee.

Then the city markets with their haphazard crates and shallow fronts,
the Chinese woman in a corner stall that I trotted hurriedly past
with my nose pinched shut, the overwhelming fish-smell
that revolted my inland dweller’s sensibilities. I had not yet learned
to eat things that swim.

Old Italian men who once gambled in speakeasies with my grandfather
Inquired after ol’ Sally.
A pat on the head for me, followed by a wink and a nod
that meant I had the go-ahead to grab gratis
handfuls of cherries from their bins to carry in my bunched shirt,
and I’d spend the rest of the day shedding stems and pits,
hands and mouth stained grappa-red.

Jingle’s, the Korean convenience on Summit with
bluish lighting, created from deep shade by their few windows
and steeply sloped striped awnings.
I remember their bottles of neon-colored soda.
And the Little Holly Market we could walk to,
if we were in a hurry, to grab a loaf of Wonder bread
for later, when we’d eat sandwiches or grill melts,
getting them gritty in childish hands . . .

Let me create memories for you in courses and feasts,
teasing out your tongue.
The Catholic buried at the back of my consciousness
salivates at the plain wafer.
I will give you something purer. . .

Empty chairs crave your arrival, as I do.
And when this evening’s done, what will my tongue remember,
what taste of you?


It’s funny, all the women in my family were great cooks, but I was always convinced that I would be hopeless in the kitchen. Then when I grew up and got out on my own, I discovered that I wasn’t bad at it after all. And, more importantly, I loved it. From there, food has grown into a full-blown obsession. First, for pleasure. And lately, for more serious reasons.

One of the major problems we’ve been facing for over a year now with Patrick’s health has been stomach issues: lack of appetite, nausea and vomiting. Last March, he lost about 30 pounds while we scrambled around, trying to find a medication to help him stop throwing up, and having specialists run tests to rule out things like celiac and Crohn’s disease. One of the drugs they tried him on late last spring actually caused him to have a psychotic episode that scared me so much I almost called an ambulance, but wound up taking him to the ER myself. (There was nothing to do but wait for the effects of the drug to wear off.) Another drug he tried was something they give chemo patients, but it didn’t help. It goes without saying that good nutrition is important, but for a dialysis patient, proper diet is paramount—dialysis leaches protein from the body, so we have to make sure that he gets at least nine ounces of protein a day. That may not sound like much, but it's pretty tough to do when you can’t even brush your teeth without retching. Without the proper amount of protein, he could go into cardiac arrest.

Last fall, we hit on a combination of meds for a while that reduced the vomiting and helped stimulate his appetite sufficiently that he was eating two meals a day, which satisfied his doctor. Then, about two months ago, he started throwing up again.

Now we’ve learned that his body is no longer digesting food as it should. Apparently, this is common in dialysis patients, especially those on peritoneal dialysis. A catheter in your stomach interferes with digestion—go figure. When he tries to eat, the food just sits in his digestive tract and doesn’t move. Eventually, it comes back up.

So. More meds.

In the meantime, we have become big users of protein shakes. Over the past year, I have become hyper-sensitive to Patrick’s food cravings. On the rare occasions that he’s hungry, I happily try to supply him with whatever he’s in the mood for.

After we went to the River Market, we took a slight detour over to Columbus Park to a Vietnamese grocer/take-out and got one of his favorite snacks, pork sandwiches on baguettes with cilantro, carrots, cucumbers and peppers—only $2.50 apiece. I highly recommend. We bought two and he ate both of them.

Then we went up to the park on Quality Hill to snap some more pictures. And if the four horsemen of the apocalypse happened to show up and trample our picnic—well, let’s just say, I wasn’t havin’ it.
So who do I thank for today—who do I thank for this most perfect and glorious of days? God? Satan? I’m really not particular. I just want to give credit where credit is due. The pictures above really don't do justice to it all. The colors, the tastes, the sounds. There was a jazz flautist playing in the market, wooden flats overflowing with flowers. Women in sundresses like in the Rolling Stones song. When I stood in line at the dollar store to grab fresh batteries for the camera, a baby smiled at me.
World without end.

Wednesday, May 18, 2011

Hanging Blood

I can’t remember what time of day it was that I took Patrick to the ER. I can’t tell you how long we waited, or the name of the doctor who examined him. I only remember that he was admitted, and it was bad.

Research Medical on Prospect has one of the two kidney transplant centers in the Kansas City area, skirting the east side's infamous Murder Factory along Sixty-Third. I went home to pack a bag—a change of clothes, laptop, and, most importantly, shampoo, deodorant, toothbrush, and the like. I know from too much experience that hospital soaps and shampoos are usually some cheap-ass shit and in these situations, little luxuries go a long way.

When I returned late that evening, there had been a shoot-out in the parking lot. A beat-up car, riddled with bullet holes, was sitting in the emergency lane—I hesitate to use the word ‘parked’ since the car looked like it had screeched to a halt, its passengers evacuated, and somebody just happened, as an afterthought, to throw it into park. Glass sprayed white across the blacktop like shards of ice, glittering in the red-and-blue strobe of squad car lights. Inside, the waiting area was a sea of uniforms. There had to have been at least fifty officers there. When I entered through the sliding doors, clutching my gym bag, my backpack, and a laptop case, every single one of them turned to eyeball me. I wanted to snap at them, “Oh, for fuck’s sake. I’m a short, bespectacled white chick. For once, make racial profiling work for you.” I didn’t, of course. Fatigue held my tongue. The knowledge of how inadvisable it would have been to mouth off to a roomful of cops who were already on-edge and needed very little reason to go all stun guns and pepper-spray on me was irrelevant.

One day at the hospital. That was all it took. I had entered a world of unreality, florescent lights both too bright and not bright enough, shadowy visitor’s lounges and stark help desks. I had become part of the passing scenery in other people’s life-and-death dramas as they were the scenery in mine.

I would find out in short order that the area around the hospital is so dangerous that the building actually goes into lockdown at 9 p.m. The only way in is through the ER. You have to check in with security and be issued a visitor’s pass. They keep one corridor open and you have to be buzzed through a series of locked doors to reach the elevator.

Shifting the straps of my various bags from shoulder to shoulder, I took the elevator up to the fifth floor. Renal ward. Room 5257.

It is New Year’s Eve. 2008 is out, 2009 in. But time is an abstraction, not the hard line that most people think it is. It’s amorphous, unreliable. Hospital time’s worse. The damn lighting. It never changes. The temperature has nothing to do with the season, nothing to do with the greater world beyond. There are New Year’s decorations up, but it’s hard to credit the cheery, tinseled banners against stainless steel beds, eternally buffed tile and the unending drone of machines. Obama’s all over the television, but his face is reduced to an image on a tiny screen in the corner, impossibly far away, irrelevant. You have no power here, Mr. Commander-and-Chief. I can still see the reflection of the television off the window glass in Patrick’s room, bluish and cold. But I can’t see what lies beyond it. It seems I have lived my whole life in this room.

The nurses are kind. When the heater in the room stops working, they are the ones who keep calling and yelling at the maintenance guy to hurry up and fix it. Patrick is anemic, and always cold. But they are thinking of me and my comfort, as well. They bring me cheese and crackers, dishes of ice cream, cans of pop. They bring me smiles and peaceful pleasantries. They bring me a roll-out cot, blankets and pillows. I impress them with my sweet, tough-girl selflessness. But they’re wrong. I’m not sweet or selfless. I’m hiding out. I’m hiding out in this suspension of reality known as room 5257, unable to face the world outside of it, the world without Patrick.

At midnight, the guns and firecrackers start going off. Patrick has long since fallen asleep. Car alarms sound, the inevitable police sirens scream. The gunshots are uncomfortably close. It’s like the Gaza Strip out there.

I roll out the cot next to the bed, and lie there, listening to the madness outside, not really so different from the madness inside.

Two months before, Patrick had been diagnosed with IgA nephropathy, or Berger’s disease. IgA nephropathy is an autoimmune disorder in which the IgA antibodies build up in the kidneys, damaging them irreparably. There is no cure for it, though the progress of the disease may be slowed down with diet and medication. The disease has also been known to go into remission, but 25-30% of sufferers eventually experience total renal failure.

At the time he was diagnosed, Patrick had about 34% functionality left in his kidneys, or Stage Three Renal Failure. Dr. Alexis Thomas, his nephrologist, put him on a strict low-sodium, low-potassium diet and a drug cocktail: immunosuppressants, blood pressure medication, iron supplements, steroids. We got one of those giant plastic pill-organizers that you see old people use. There was no way to know how quickly the disease would advance, if at all. He might hover at Stage Three for months or years. But what we did know is that he would eventually have to go on dialysis and seek a transplant.

When they admitted him to the hospital on December 31st, he was at 14% functionality, or Stage Four. By February, he would be Stage Five, or End-Stage Renal Failure. There is no Stage Six.

At Christmas, Patrick could barely walk up stairs. Just going from the bedroom to the living room left him short of breath. He had no appetite. He threw up a lot. He was all puffed up from water retention. His hands swelled. His feet were double their normal size, so he couldn’t wear shoes, just slippers. His hair was falling out. He had developed a buffalo hump from the steroids. He shook. We couldn’t tell where symptoms ended and side effects began. The doctors played with his prescriptions, his dosages. He got sicker. They played around with them some more. He got worse.

Yet, despite it all, he had tried to continue working. He was a customer service rep at the T-Mobile call center in Lenexa. He was at work that New Year’s Eve when he almost passed out. His supervisor had offered to call an ambulance, but he’d refused. They called me instead, and I went to get him.

It’s amazing that I didn’t wreck the car. I was teary-eyed and hyperventilating slightly, trying to stay below eighty on the highway-- hell, trying to stay below ninety. When I arrived, I remember how small he looked, bundled in his coat, waiting for me outside at the entrance of the office park. He hadn’t even had a break yet, and was holding the sack that contained his sad little lunch. He was paper-white and dizzy. As he got in the car, he dropped the bag, and joked, “The peanut butter is down! I repeat, the peanut butter is down!” That remark both cracked me up and served as a welcome balm for my ragged nerves, so I was able to drive much more slowly and carefully to the hospital.

In the ER, his blood work showed his hemoglobin count was six. A normal male’s is around fourteen or fifteen. He would need a blood transfusion. But before they could give him a transfusion, they would need to strip the potassium out of his body. The kidneys filter potassium and his, of course, would not be able to handle the potassium levels present in the donor’s blood. Then there was the larger question: where was his blood going? Internal bleeding, obviously, but from where? That one wouldn’t be answered for several weeks.

Dazed, I signed all the forms releasing the hospital to treat him. When I got back to the ER room, he was sucking on a nebulizer-- Albuterol, like they give to asthmatics, only in his case, it was to purge him of potassium. There’s only one way to rid the body of potassium. You have to excrete it.

They quickly moved us to our room on the fifth floor before the Albuterol got a chance to kick in. Inhaling it like that, it hits the blood fast.

It was as bad as you might imagine.

They kept him in the hospital for eight days. They ran every kind of test imaginable, trying to find the source of the bleeding. Both an upper and lower GI, which called for fasting, enemas, disgusting laxative drinks by the gallon, and of course, anesthetic, which made him throw up; some sort of scan that required him to drink barium; and a pill cam. None of the tests revealed the bleed site.

He was released briefly, only to go back less than a week later after almost passing out again. He needed another transfusion—this time, seven units. He was hospitalized for fourteen days that time. Finally they determined that he was experiencing micro-bleeds—little ruptures smaller than paper cuts along the GI tract, a result of uremia, the build-up of toxins in the body. The problem was compounded by the fact that kidneys are what stimulate red blood cell production in the first place, so he does not produce blood at a normal rate, and was thus not able to make up for the blood loss. He needed to go on dialysis as soon as possible. But the soonest we could schedule surgery for his catheter placement was April.

The days and weeks became a blur of emergency room visits. I don’t know how many times we went to the ER between January and September of 2009. I stopped counting after the eighth. We got to be on a first-name basis with most of the staff. He needed at least one more transfusion that I can recall. The other times were for other complications arising from uremia and his weakened immune system—blood pressure fluctuations, high fevers, potassium build-ups. He was given periodic Kayexalate treatments, a drug that, like the Albuterol, stripped his body of potassium—special K, we called it. Whenever he took it, he’d spend at least two days on the toilet. When the dialysis catheter was finally put in, he developed an infection, and had to go right back into the hospital for almost a month.

The TV mounted in the corner is pretty nice, actually. We don’t have a TV at home. We watch nature program vignettes, all passion plays and high drama and operatic occurrences, swelling flowers in Madagascar like fat-lady bosoms on arias, mother humpback whales nursing their young, and father penguins in priestly black. And of course, cheetahs eternally bringing down by the throat loping gazelles. We all think of gazelles as graceful, but not at the stumbling moment. And anyway, who decided the cheetah was any less elegant? Who decided there was anything elegant at all in nature? This is nature, right here, indelicate and undignified. People come and go with clipboards. Others bring potted plants with bows. We are buoyed, chatty at company, but after they leave, we sit and stare blankly at each other.

Phlebotomists make the rounds at least twice a day, collecting samples in vials the size, shape, and color of Tabasco bottles. One an old woman, older than you'd expect a lab-worker to be, lined, stooped, moves slowly. She wears large glasses that reduce her eyes to specks, yet somehow magnify the yellow and the veins. She always asks to borrow my chair so she can seat herself beside the bed as she draws the sample, her hands trained in a lifetime of patience. Then there’s the impudent younger technician who calls you dude, and jacks the bed up to its maximum height as if you were a Trans Am he was working with and not a body, smelling of cigar smoke. A third wiggles the needle. Blows the vein out. Leaves you bruised from wrist to bicep. When the old-lady phlebotomist comes back she will shake her head and say, “Mr. Roberts, your arm’s tore up somethin’ awful.”

The man down the hall, we’re told, has been on the ward for six months. Another is senile. He bellows all day long, calling for the doctor, for his dead wife, or simply, HELP ME. Tirelessly, repetitively, unceasingly. If I hadn’t believed in euthanasia before, I would now. You can time the progression of tranquilizers through his system—he goes quiet when they dose him, and then his voice increases in volume in direct relation to how much the sedative has worn off.

We flip the channel to a gameshow and call out answers.

In the bruise-colored night, I prowl the halls and ignore the gazelle-like looks of sympathy I get from the nurses.

I feel like I am home only to shower, change clothes, and feed the cats, who are becoming feral from lack of human contact. This house we have lived in less than a year doesn’t feel like home, though, and has an air of emptiness. I use dependent care leave from work. (Fortunately for me, my company adheres to FMLA laws. Not all employers would be so benevolent.) There is no routine. Or, at least, a new routine, of sorts, has developed. We keep a bag packed and ready to go by the door, like a couple who’s expecting. And we are—always expecting the worst.

Sometime, I think it was in June because I seem to recall that it was hot, we were sitting in the ER waiting room when a man was brought in by ambulance. They thought he was having a heart attack. His entire extended family gathered in the waiting room. Many of them were crying, anxious, desperate for news.

I look up from my book, amazed, thinking, Gosh, what is the big deal? It’s just an ER visit. Is it really necessary to bring the whole damn clan?

And that’s when I realized. Oh, yeah. For most people, this isn’t normal.

I vacillate between fury and despair. I am holding down a full-time job supporting two departments, going to school at least nine hours a semester, and dealing with all this, so any time someone complains about some paltry thing, I can’t help but flash to that scene in Reservoir Dogs, where the cop who gets his ear chopped off starts blubbering, “I’m fucking deformed, I’m fucking deformed,” and Tim Roth’s character, who’s been gut-shot, rears up and spits, “FUCK YOU! FUCK YOU, I’M DYIN’!” Several times a day, I have to resist the urge to whirl around and scream at someone, “FUCK YOU! I’M DYIN’ OVER HERE! DO YOU HEAR ME? I’M FUCKIN’ DYIN’!”

So many people do actually want to help. There are co-workers who are, at the very least, tolerant, and many who are deeply compassionate. My professors are stellar, some even exempting me from any work or quizzes I didn’t feel I could complete, and one even let me skip a final. My mother comes by and cleans my house for me once a week, checks in on me. My best friend spends several nights with me at the hospital, and later helps clean my basement after it floods. People visit and send flowers. My neighbor takes out my trash. When spring comes, one of my co-workers sends her son over to mow the lawn. Patrick’s cousin cleans the gutters. My parents’ neighbors send money. My brother-in-law sends money. Father Oldani says mass for us. We are on more prayer lists than I can count.

Whenever I am asked about God, I tell people I am split, 80-20. About 80% of the time, I believe God exists, but I don’t like Him very much. About 10% of the time, I think there is no God, that the universe is just random and cruel. Then there’s the 10% that I don’t like to admit to—when I believe it is possible for a God that exists who is paying attention: the coincidences that are too large to ignore, the acts of largesse. Evidence, in other words, of His presence in the world and, most of all, in us. And then I think it is possible to have a relationship with the divine, and if I spend my life in the margins of that 10%, it will not have been a life ill-spent.

Life teaches continually that there are no certainties. Every goddamn day is a sucker punch. We can only hope, moment to moment. It’s like recovery, living for the now, or enforced Buddhism—being Zen, going with the flow, letting go of earthly possessions because, you see, none of this matters. Least of all the body.

But there are days when I am so greedy for life. Gentle sun. Breeze. Catching cupfuls of air in my hand out the car window. Writing, writing, writing.

Sometimes, I just feel disassociated. Other times, I feel hollow, like God has scooped me out. Light passes through me. I am filled without weight, the fullness of a soul in expansion, and 10% is starting to feel like an awfully big margin.

New Year’s Eve, 2008, the beginning of a revelation. The revelation is this: you never know what you are capable of, what reserves you have. Then one day, you help your husband on and off the bedside commode because he's too weak to walk the five steps to the bathroom. Hold the bedpan for him. Flush the used toilet paper when he's through.

You never knew.

This might be a cakewalk to someone who’s changed a diaper, infant or adult, but I never have. I’m not a mother, not a caregiver, no Florence fucking Nightingale. And this is the hardest thing I’ve ever done. Having to wade into the indelicacies of flesh, the indignity of suffering, the unfairness of it all. A childish voice in the back of my head keeps shrieking, He’s only twenty-nine, only twenty-nine for Christ’s sake. We’re too young for this.

Patrick once worked with a woman who had been married for over thirty years. She told him that, after a point, you stop being friends or lovers. After so much shared history, she said, you’re really more like battle buddies, and she was absolutely right. This is Fallujah and I’m dragging his poor torn body through a minefield. I hope I can do this.

Outside, the guns go off, and the firecrackers. Joy, abandon, revelry, crisscrossed with criminality, helplessness, defiance, despair, desperation. Outside, they rail against their circumstances every night except tonight, when the possibility of a fresh start, or at least, the possibility of divesting oneself of the past and all of its horrible fuck-ups, is in the offing. A possibility distinctly deserving of savage celebration.

But inside, you can’t think about these things. You can’t think about circumstances or fate, fair or unfair. The cheetah and the gazelle are equally elegant, equally indelicate. You can’t think about past or future. All you can do is this, what has to be done.

Wash your hands and go on. There is precious little that cannot be washed away.

I towel my hands dry, marveling. This is all an exchange of fluids: mother's milk, marriage ceremonies end on a note of saliva, childhood friends rub the oozing skin under their scabs together, declaring fraternity for all time, embalming fluid enters the body's chambers. 

The nurses call transfusions “hanging blood.”  If I wasn’t already struck by the power of fluids, I'd be bowled over by that naked terminology.  Nothing can prepare you for the sight of those bags.  You know blood is red.  You know.  But the spots left on the cotton balls in phlebotomists' wake only hint.  Valentine's Day red, Valentine's Day massacre red.  The sight of them hypnotizes you, the way that red sings its way through the no-color, meant-to-be-soothing taupes and mints and lilacs of the hospital wards, that dreamlike way it mixes, swirling and diffusing through the clear liquid in the tubes, passing through the tubes themselves, and then into the veins.   

Cheerful orderlies bring bowls of broth he is too sick to eat.  There are sponge baths and oils, no ritual gone from the act of banishing the unclean.  The Catholic buried in the back of my consciousness is stirred at blood, bathing, oil, a woman camped out at the foot of a dying man, Golgotha, the Romans aiming kidney shots at the Messiah. 

When I finally do sleep, I will dream of the clinic across town where donors whisper, “This is the cup of my blood,” before they lie back and sip juice.


Sunday, May 15, 2011

Go ask Alice

My husband, Patrick, and I have been married for almost eleven years now. He has what is classified as a terminal illness: he is in renal failure, which requires him to be on dialysis. Dialysis is life support. It’s so common, many people but don’t think of it that way. But most people also don’t think of a 30-year-old man needing dialysis either. Yet if he were to go off his treatments, in 8-12 days, he would be dead.

In October 2008, Patrick was diagnosed with IgA nephropathy, or Berger’s disease, an autoimmune disorder. Currently, we do peritoneal dialysis (PD) at home. We’ve been doing it for two years now. We call his machine Alice the Dialysis Machine. Say hi to Alice:

It's often easy to hate Alice. Most men dream of threesomes, but I’m pretty sure this doesn’t fit the fantasy. A friend of ours suggested we decorate her with bumper stickers that say BITCH and spray-paint her with skulls and crossbones. That’s a fun idea, but then I remind myself that she’s the thing keeping him alive, and when she beeps in the night, waking us both up multiple times, and when the drain pains are agonizing, I have to remind myself to hate her less.

What are drain pains? Oh, well, let me explain some more about how dialysis works.

Peritoneal dialysis is less common in the US. When most people think of dialysis, they think of hemo dialysis, where patients have to go into a clinic a few times a week and basically get their blood sucked out, cleaned, and put back in—a painful and exhausting process, I’m afraid. (Patrick had to go through it before his PD catheter was ready for use.) Hemo is done through a fistula, usually in the arm, but it can also go in the neck or the leg. Patrick had a temporary line put in his neck and it was not pretty.

PD is a method done, as the name implies, through the peritoneal cavity, or the abdomen. A catheter is inserted into the abdomen:

Cathy the Catheter

As you can see, the catheter means that Patrick has a perpetual open wound in his stomach, which means we always have to be on the look-out for infection or other complications.

Through Cathy, dialysate fluid (sugar water) is pumped into the abdominal cavity where it is allowed to set for a period of time. As it sets, it soaks up toxins that would ordinarily be filtered by the kidneys. Then it gets pumped back out. The waste material that gets pumped out goes through a tube, down the hall to the bathroom and into the toilet.

This is done multiple times over the course of the treatment. Treatments are done nightly. A full treatment takes about eight hours, not including prep-time, during which 6.5 liters of dialysate get pumped through his abdomen, with some left in at the end so his stomach is not left dry. Getting left dry is horribly painful. The amount of dialysate a person uses varies; Patrick actually uses a very small amount of dialysate compared to most adults.

We discovered that the PD catheter come in only two sizes—adult and child. So a catheter that would fit, say, a 300-pound man is the same catheter they use on 135-pound Patrick. The catheter pokes. And when the treatments are going on, sometimes the catheter shifts against his insides. Imagine a straw getting stuck against the side of a Capri Sun bag and you have an idea of what’s going on. Patrick does his dialysis treatments overnight, so we have to be very careful about how he sleeps—don’t want to roll over on his tubing, or accidentally tug anything out. Thankfully, that’s never happened, but you never stop being paranoid about it. Also, when he hooks up to the machine at night, the environment has to be as sterile as possible, so he basically has to scrub in for it. Before scrubbing in, his dialysate bags have to be sufficiently warmed up, which takes 3-4 hours. You do not want cold dialysate fluid going into your belly.

Dialysis takes a lot of supplies. We place an order monthly through a company called Fresnius who delivers them to our house. This photo shows our storage room in the basement, fully stocked. Supplies cost around $12,000. Insurance, Medicare and the American Kidney Foundation cover the bulk of our medical expenses. The supplies consist of bags of dialysate, tubing sets with clamps, safety caps with iodine, hand sanitizer, medical-grade hand soap, alcohol wipes, bleach wipes, belts to hold his catheter in place, heating pads, collection bags, and IV antibiotics. We have to have special medical tags for trash collection because, obviously, all of this accumulates a lot of waste. None of the supplies are reusable. Of course, we have permanent equipment like Alice herself, and an IV pole to hang the bags of dialysate fluids in case of a power outage, or if we ever decided to travel. And finally, there’s medications. At one point, Patrick was up to nineteen separate medications. Now he’s down to thirteen.

One pill makes you larger, and one pill makes you small . . . 

We have been on the transplant list for eighteen months. The wait time varies from state to state. In Missouri, the average wait is 18 months to three years. We will be at the long end of the spectrum because Patrick’s blood type is O-positive, which means he can only receive from other O-positives.

You may be wondering why we opted for PD. Well, consider that your kidneys operate 24/7. The more dialysis you can do, the closer you get to normal kidney function. It also gives us a more direct role in Patrick’s health, rather than having to rely on going to the clinic three times a week and letting someone else hook him up to a machine. Finally, it’s nice to be able to do this at home, in our own bed, even if it means strange bedfellows.

Called Alice.

Monday, May 9, 2011

"The part with the dragon gave me chills"

This morning, the headache was back with a vengeance-- woke up at 5 and couldn't go back to sleep. I also woke up with a wicked craving for a Pepsi, so I finally gave up on going back to sleep, got up, took two migraine pills and as I write this, I am sipping the oh-so-bad-for-me beverage. Of course, Patrick turned the AC off last night, so it's very stuffy in the house now, but my thoughts are of winter and ice. Last week, I got something of a fan letter from a little girl who read one of my children's stories, "The Ice Dragon."

There are two sources of inspiration for this story. First, was Neil Gaiman's short-short story "Nicholas Was." (Read it-- it's less than 100 words.) I first read the story in Smoke and Mirrors, in which Neil included a brief introduction to say that he wrote the story to include in a batch of Christmas cards for close friends one year. Ever since, I'd been enamored with the idea of writing Christmas stories to give away as gifts. My favorite gifts have always been handmade. Mind you, my stories will never be 100 words or less, or even 1,000 words or less-- that's just not how I roll. Well, "The Ice Dragon" was my first successful attempt.

The other source of inspiration was my best friend and co-author, Coyote Kishpaugh. The series we co-write together is technically considered urban fantasy. I enjoy writing fantasy stories, but funnily enough, I don't care to read much fantasy. Especially high fantasy. I'm such a literary snob, in fact, it's become an on-going joke between Coyote and me. So, as we've spent six years working together now, he loves to needle me on the subject of introducing certain fantastical creatures into our series: "Dragons?" "No. No dragons." "Just one dragon?" "NO! No dragons!" "Just a little dragon?" "NO! DRAGONS! EVER!"

So, for my first Christmas story, I wrote a little fantasy for Coyote and his kids that features the eponymous critter. Here's a little excerpt from the story:

Gracie led him over to the tree, where one package remained, wrapped in silver wrapping paper with a blue ribbon. She picked it up and handed it to him. “Here,” she said. “This is for you.”

Somewhat awkwardly, he opened it. Inside was a solid gold ornament of a swan. Inscribed on the back was, Merry Christmas from the Calls.

“Look,” Gracie said, taking the swan from him and looping it on the blue ribbon from his present. “You can wear it like this. And look—”

She took his hand and led him through the dining area. She went up to the table where her father was sitting and removed two of the holly wreaths from the centerpieces. Then she led him through the dining area, off to the side of the lobby, through a pair of glass doors.

They stepped outside into a kind of little flagstone courtyard, enclosed by a wrought-iron rail. It was very quiet. They couldn’t even hear the band playing inside. In the spring, it must have made a pretty little garden, though at the moment, there were just little evergreens in the stone pots, trimmed with ribbons. It was very cold. The black wrought-iron was icy, its pointed spokes encased in a thick, crystal layer. But Gracie didn’t seem to mind the cold, so he didn’t either.

They walked over and stood beside the rail. “This is my favorite place,” Gracie said. She took one of the holly wreaths and put it on his head. “I crown you the Christmas King,” she said. Then she put a wreath on her own head. “And I’ll be the Christmas Queen.”

At that moment, a light snow began to fall. Both children looked up, Kenneth astonished, and Gracie pleased. As they looked, both of their hands touched the rail.

Suddenly, the railing moved. They jumped back as it rose and curved up, the spokes forming the ridges on a lizard-like back. Clawed feet appeared, a pair of bat-like wings, and finally, a head. It turned towards them, blinking, its nostrils quivering.

The mouth opened, revealing a slithery black tongue. Fire shot out.

It was not a very big dragon, only a little bigger than a cat, so there was not a lot of fire, but all the same, Gracie screamed, and she and Kenneth jumped back.

The fire melted the dragon’s wrought-iron center so it flowed like molten black blood, flooding the icy body with darkness. The black solidified into hard, rubbery scales, the ice melting into a mottled blue and white pattern over the black.

It stood for a moment, still balanced on the wrought-iron poles that made up the gate, and then the dragon lifted one great forepaw, then a rear paw, flexing, seeming to test its new body. Then it yawned, stretching like a cat, its rear arching into the air, claws splayed.

At last, it sat up on its forepaws and turned to Kenneth and Gracie, blinking its great black eyes. It flicked its black tongue, and lashed its long, blue-white tail, which had one great black spike on the end of it.

“Thank you, children,” the dragon whispered in a low, purring voice. “I’ve been asleep ever so long, and now, I would like nothing more . . . than a snack.”

With that, it leapt off the gate, spreading its webby black wings, and launched itself straight at them.

Both Kenneth and Gracie yelled this time, and leapt out of the way. But the dragon was not after them.

With a snort of its great nostrils, steam shot out and gusted the glass doors open. The dragon flew inside the shopping center.

Kenneth and Gracie stared after it for a moment, utterly aghast. Then ran in after it.

And here is the nice bit of feedback I received from a little girl named Jess:

"Sup Lauren. I read 'The Ice Dragon' over break, haven't gotten a chance to read the other one though. It was really good, I especially liked the riddle. At first I didn't get it but after I found out the answer I saw all the different clues. Like the hint to Sodom and Gomorrah and 'to the thirsty am a double blade'. I didn't understand what the necklace was for, but after the swan died and it went cold I realized that it was sort of like her heart. The part with the dragon gave me chills at first, and the wreath crowns were cool. You really did a good job, it felt like I was there. Thanks for letting me read it, probably one of my fave kid stories."
Thanks, Jess.