Sempre l'altra cosa

she's an easy liver/(she'll get a hold on you, believe it)

2009-11-09T23:40:00.000-08:00

1) I'm getting more liver tests. The people in the liver clinic are very thorough. They had no problem walking me through every possible scenario of what could be wrong with me, right up to the part where I get cirrhosis and need a transplant. But, they assured me, not in a scary way.*

2) I'm in love! Is something wrong with me? Is this going to show up on my next (seemingly weekly) MRI with arm-bursting contrast? I am in love with this man. He is dancing. He is singing Sisqo. Crohns, don't take your temperature now; it's so wrong, it has to be right.

*Note: On the sidelines of all this, in what I am trying to consider a completely non-creepy coincidence, I am sending out a story I first drafted three years ago, title "Transplant," which culminates in exactly what you would imagine. I would say this is life imitating art, but here I think we're going to have to settle with lifelike possibilities imitating another dubious story. "Art" it can hardly be called, as scores of people who have been subjected to it at readings can assure you. (At my reading in October, I looked up just in time to see one confused listener mouth to another, "WHAT?") I'm just wishing I hadn't done all that completely lifelike research where I learned about exactly what happens at every moment. In case you're wondering, it's gross. Incidentally, I think the next story I write is definitely going to feature someone winning the lottery, curing cancer, and then being energetically but sincerely seduced by the man in the above dance sequence. I mean, just in case I actually wield any power here. Maybe I'll also add a little epilogue where everyone who doesn't have eyebrows gets them! Because short stories can absolutely have epilogues all of a sudden.

what lacks in subtlety

2009-11-06T15:47:00.000-08:00

This morning, attempting to work on my "novel" (can I take away the quotation marks after page 150?), I allowed my iTunes to express what it would by authorizing its "DJ" function. (Those quotation marks, unfortunately, are non-negotiable, since there are no disks involved and no person or thing is expressly jockeying them. Sorry --- once a devotee of the Chicago Manual of Style, always a devotee of the Chicago Manual of Style.) iTunes had a few things to say. It had to say:

1) Ladytron, "Destroy Everything You Touch," followed directly by
2) Justin Timberlake's "What Goes Around Comes Around," after which came
3) The Besnard Lake's "Disaster" and finally
4) Dolly Parton's "Jolene."

Seriously? Come now, iTunes "DJ." Somewhere in there someone, a gnome or rat, is tee-heeing its little heartlet out. I mean, "Jolene"? What my novel lacks in subtlety* iTunes "DJ" lacks in spades. Later on in the day, having moved on to other, less pressing subjects, it decided that the time was right for Datarock's "Nightflight to Uranus." A Crohn's joke, iTunes? If you're that lighthearted, be my guest.

Luckily for the "DJ" there's only a finite amount of music with which to jockey. I don't think there's anything about excessive consumption of pomegranates (possible song: "Get Them Seeds/Get Them"), four quick, almost jaunty vomits in a row ("And You Ain't Even Drunk, Girl") or a declaration at the doctor this morning that I think I may be losing my composure at large ("Jolene").

*I heard the market was undersaturated with ten-page reveries about the medicinal properties of Feverfew, so I went ahead and dropped one into the middle of chapter 3. See you at the rejection booth!

in which i proceed above the pace of 1 mile per hour

2009-10-30T16:59:00.000-07:00

This morning we got up very early to go to the hospital for my procedures. I felt like ass. I don't know about you, but when I have to get up very early, or when I am going to the hospital, I always dress like crap, in pants that do not fit me and T-shirts usually reserved for sleep or running. Absolutely no makeup, not even sunscreen. The sun is not going to get you in there. Besides, studies (my studies) have shown that with enough makeup and a big smile, people might actually believe you are a normal, healthy person, and in the hospital you don't want that anymore.

I got a wheelchair! Somebody noticed it was taking me a thousand years to get up the ramp to the entrance, and they got me a wheelchair. I love riding in wheelchairs. Even though Juan was walking next to me, which means I must have been going about the pace of walking, I felt like I was going inconceivably fast.

They ultrasounded my abdomen. In the women's center at the hospital, the ceilings are painted with flowers. I never thought I'd get so soft, but I like it there, and I appreciate the flower paintings. I enjoyed looking at the flower paintings while they used the roller to press on my gall bladder and liver until I gave the sign that it hurt, so they knew how far they could press. I liked how the word "women" was all over the center. I must be going really soft because the word "women" in so many places made me cry.

Afterward we went into a deli. I ate some toast crusts and the white part of one and a half eggs along with 40 ounces of mint tea. Then we went to the blood lab. I had ten tubes of blood taken, from the same site as Monday. When the needle went in I could feel the scar tissue breaking. I asked the lab technician, while the blood was running through the tubes, where her Halloween costume was. I know all the lab technicians there.
Today's technician blushed when I asked her about her Halloween costume. She said she was too old for costumes. I asked her how old she was and she said 28. I said me too. I told her she should have come to work as a vampire.
"That would have been funny," I said.
"Why?" she asked.

My legs are impressively heavy now. They're so, so heavy, like they're made of something denser than themselves. I've heard that dead bodies are extremely heavy, that they take double the people to carry them a distance. For a few hours every day they wake up and I hobble around to appear places where people expect things of me. One thing that people expect of you, even if you're sick, is that you will show up places and smile and talk about normal things and make jokes about being sick, like it's absolutely no big deal. It's hard to come up with normal things to talk about when you are in the hospital or in bed all day, but this is part of the deal. Usually Juan has to walk me partway, and I can only walk a few blocks, but even if it takes an hour that's better than none.

Every week for two months now I'll be giving the ten tubes of blood. I hope my veins arrive from Amazon.com soon. Somehow I ripped out the stitches from my groin procedure last week. I wasn't even touching it and then all of a sudden I heard a rip, and that was it. On Tuesday I may get new stitches. Then, later, I will go a different doctor and hear about my MRI and my ultrasounds and my biospy reviews and my blood tests. I will see the liver doctor and the leg doctor and the Crohn's doctor and the groin doctor.

Sometimes, because it feels unpleasant, because it's painful physically, it's easy to forget how extremely lucky I am. I am so lucky that these doctors are running these tests to see what is wrong with me, and that they are trying to fix me, and that my insurance is going to pay for the tests. And I am so lucky that Juan is here to help me get out of bed and walk down the street. I am so lucky that it is overwhelming. I wonder how I will ever be able to pay all of it back.

a revolution for ari

2009-10-28T14:39:00.000-07:00

Today I turned a full revolution in bed by myself, with no assistance. Next thing you know I'll be placing first in a logrolling contest. At least, that's what the optimists would say.

What was the occasion? Today marks the 21st birthday of my favorite and only sister, the beautiful, brilliant, crusading-for-justice Ari. Wow! you're probably saying to yourself. That means Ari will have her first interaction with alcohol and the institutions that serve it! No, Ari made her own milestone there years ago, when she was probably still in braces and yours truly was being kicked out of bars for using her real, valid, over-21 ID. It turns out that being beautiful and brilliant earns you more than just achievements for the good of man and scads of friends; it also earns you booze. Ari, a toast to you today, my friend. A legal toast. Hallelujah.

I sent away to Amazon.com today for more veins. I think I'm going to need them. Next up: What appear to be three million blood tests, and an abdominal ultrasound. No one will tell me what this is all about, except that it is about my liver. The good news is that if you buy a certain amount of veins, you get free shipping. I got free shipping.

in which the motion is carried by ayes from roadrunner and myself

2009-10-27T16:23:00.000-07:00

This morning I was the proud recipient of a triple biopsy of the groin, which sounds like something I would like to award to a hometown sports rival rather than myself. (Greetings, Dallas Cowboys! A Friend Has Gifted You One (1) Triple Biopsy of the Groin! Call at Any Time to Redeem Your Special Gift!) They kept warning me it was going to be so painful, utterly painful, and while yes, it was kind of painful, it honestly had nothing on, say, having your veins explode before your eyes and then having 20 cc of gadolinium leaked into your arm. Overall, I am a satisfied customer.

Afterward, cauterized and yet somehow also bleeding, I accompanied Juan on an errand where we purchased more of the childlike, dog-print cotton underwear I favor despite the fact that I am a 28-year-old woman. I buy the large size underwear even though that underwear is supposedly meant for people whose pants sizes are two to four sizes larger than my own. More cloth = better deal! Right? In Deliverance, a dude used his balled-up underwear to clot up a gigantic arrowhead wound in his side. If he had been wearing the small size dog-print bikini underwears, where would he be now? I ask you.

I guess something is seriously wrong with my liver now. I have been scheduled in Urgent Care at the liver clinic. I'm sorry, but, for real? Gastroenterologist, Hand Specialist, Gynecologist, Neurologist, Hepatologist. And that's just this week. Wouldn't it just be easier to explode me with some jolly-looking TNT and start from scratch? Roadrunner says aye, Kara says aye. The motion passes. Get out the TNT.

from the annals of bicep man

2009-10-26T11:49:00.000-07:00

I would like to correct my former diagnosis of "partial use of legs" to "occasional use of legs," as I had a brief renaissance yesterday during a Boggle match with Laura and Laura. After the Boggle match, I was able to walk for approximately ten minutes! (Thank you, Hasbro.) I figured I was probably cured until about two hours later, when I was lying on my stomach on the bed unable to move in any direction, flailing around for pain medications that weren't there, and sobbing like an idiot. I know, none of you would be sobbing. You would be grinning like casino winners and simultaneously receiving the Nobel peace prize. But you're just higher achievers than I.

Luckily, Juan is still here, manually moving my legs. If you've never had someone manually move your legs, do try. Whereas before you might not have been able to move your legs, astonishingly, when someone else picks them up and shifts them around, they attain mobility! It's a magic trick definitely worth a round of applause --- after you're done shrieking with pain, or winning the Nobel peace prize, whatever suits you.

Meanwhile, I have signed up for NaNoWriMo, national novel writing month. This is the act of a desperate person, a person whose e-mail correspondences with agents have gotten increasingly nasty in recent months:

Them: Hi! Loved your stories. Want to read more! Maybe represent you! Where's the novel?

Me: Hi! Thanks! Almost done, be right there.

Them: Where's the novel?

Me: Um, here are fifty pages from the middle. Disfrute.

Them: No, where are the first fifty pages?

Me: Apologies, I write middles first, then endings, then beginnings.

Them: You are a piece of scum born not unto man, whose organs should first be ripped out by buzzards and then distributed amongst the corners of the earth, where fires begun by moose turds will be waiting to burn them, the ashes then fished out and incorporated into McDonald's hamburgers.

Me: I thought you loved my stories?

Them: Stories are a piece of scum born not unto man, whose organs should first be ripped out by buzzards and then distributed amongst the corners of the earth, where fires begun by moose turds will be waiting to burn them, the ashes then fished out and incorporated into McDonald's hamburgers. Novels are the Lord's work.

Me: Oh. I did not know that.

So, since I can't walk, I might as well try this NaNoWriMo thing. In theory, there are more than enough hours in the day to also work on the stories and also work on the novel I already have in progress, plus write another one. I mean, I ask myself: Since everyone else in the world could write three books at once while unable to walk, I should be able to too, shouldn't I?

leg salad sandwich

2009-10-23T16:24:00.000-07:00

One thing they don't tell you when you are nine and begin taking prednisone for 18 years is that at the end, when you are in withdrawal, you won't be able to walk. Yeah, I was surprised too. Painkillers, not so much helping. Part of me wants to abscond into the Fort bathroom and just gulp down all the prednisone I can see, withdrawal be damned. Everything would be better then! I'd have my legs back and feel like eight to ten bucks! But no, because I was raised to believe that through hard work one can achieve all things.

Today at the doctor, I pulled myself up the stairs by gripping the railing hand over hand and dragging my legs along behind me. Raging biceps, anyone? Raging biceps. Anyone.

I am pleased to report back to you, Crohns, about what the MRIs of others are like. Did you know, for example, that for a brain MRI, you don't have to drink the "pina colada" contrast (pina colada my ass) that makes you throw up? You don't have to drink anything! How luxurious! Plus, I even got ear plugs! These other people are living large, Crohns. There was a prolonged argument about whether I would receive an IV and get contrast. The technician told me that the radiologist wanted me to have it. I said the neurologist said I didn't have to. Reprise kindergartenesque "yes, no, yes, no" back-and-forth. Ultimately, I won.

MRI with no drinking and no IV = heaven on earth. I know, I have no life anymore.

proud recipient of a pair of warm, moist tysabris

2009-10-20T20:33:00.000-07:00

I am now the proud recipient of two Tysabri infusions. Why does it make you this way, like a little sleep puppet, retching and writhing around? At least I feel connected to the renaissance this way, when people were constantly poisoning each other and turning each other into sleep puppets, things that retched and writhed and then eventually died and were hauled away on overloaded carts. I mean, nothing.

There's something somewhat wrong with my liver now, because if it's not one thing, let's go ahead and make it another. I should know lots about livers and their discontents: I wrote a story about a liver transplant (and read from it, with extremely borderline success, Saturday night in front of like one hundred plus people). While I was writing it, I read for weeks about livers and the things that happened to them. I enjoy doing this while I am writing: the research. I openly admit that approximately zero percent of said research appears in the stories themselves; I just like reading about new things. Mostly when I research I am checking to see if my idea is completely implausible, or just mostly implausible. It's the mostly implausible that I'm aiming for.

I got taken off of my pain medications and put on new ones so that my liver wouldn't be as taxed. I'd be sad about this except my old pain medications weren't working, and neither, perhaps just for some thematic continuity, are the new ones. I'm taking them for abdominal pain and also the most intense, shark-began-gnawing-on-it leg pain you could ever imagine. Apparently that's steroid withdrawal. Because if it's not one thing, you know, it's another.

My major coup of the week concerns my Thursday-morning MRI, which my neurologist (update: I don't have PML yet) says I can have without contrast! Which means no IV! Which means no chance of them fucking up my arm like last time. I literally said, "Woohoo!" and was met with a look that suggested I seriously needed to get out more. I had an IV yesterday for my Tysabri, anyway, and that pleasant experience didn't exactly make me eager to get another one on Thursday. (Although the nurse did compliment me several times on how "tiny, almost impossibly tiny!" my veins were while she was nosing around trying to get a hit. That's a compliment, right?)

Recently the doctors have all been asking me if I live alone, if I have anyone who can take care of me. (Juan is in town again right now, which is very nice.)
"Why?" I ask, after answering.
They are looking at me in an unfamiliar way I don't like, like I am smaller than I am, or something bad is about to happen to me that I'm not aware of.

i think this is what some writers call "foreshadow"

2009-10-17T18:30:00.000-07:00

In an hour, I am about to go give a reading. Except I have a fever, one of my legs is swollen, and both have broken out in what appear to be either hives or a spur-of-the-moment celebration of the earth and its many topographies. I'm limping around like an idiot, and the fever appears to be going up rather than breaking. The good news is that I appear to know what I am going to read, at least. Or, I appear to know what I am going to utter lifelessly, given the fact that when I tried to speak just now, on the phone, a fey sort of croak came out.

I hereby call upon my former self, who constantly appeared in places she should not have when she should not have, giving face for all the world of being a totally normal person of totally normal health, to step up and represent tonight. Self, you lectured on 200 calories a day! Come on, self! You have shown up in countless venues --- family parties, friends' birthdays, work, planes, trains, automobile, with a giant fake smile on your face and gotten away with it. One more smile, self! And make it look realistic.

in which i consider dressing in monochrome to deter disaster

2009-10-14T22:37:00.000-07:00

Do you ever feel like something really bad is coming, a terrifying, almost thick feeling of ominousness and a powerlessness to stop it? Michelle and Nate's cat Wallace felt like that three Halloweens ago when, clad in one of those last-minute what-the-hell type costumes (all red clothing, head-to-toe, purchased at a thrift store that afternoon, and red-painted face and hands), I caused him what was probably the most terrifying moment of his life. Dude puffed up like a powder ball. The tail looked like an all-feather duster. He walked sideways away from me, afraid to turn his back. Who knew monochrome could be so scary? The evening ended with the three of us sitting on the couch watching TV and eating Thai takeout, me in my head-to-toe devil garb and Michelle and Nate in street clothes. Fear basically just follows me around.

My next Tysabri infusion is on Monday. To say the first month of Tysabri has been awesome would be an understatement, if we mean "awesome" in the way of an inconceivably large skyscraper about to fall on you. Also on the docket for next week: There's been this small matter of not being able to feel half of my left hand. No biggie, but apparently biggie enough to warrant another MRI --- of the brain, this time --- and a trip to the neurologist. Gastroenterologist, gynecologist, plastic surgeon, neurologist ... I'm really making the rounds this fall. It's just that I would hate to discriminate.

Motions thus carried by the court of Abby and me, regarding the upcoming procedures:

1. The Tysabri will not put me in the hospital. (Abby: "Aye" Me: "Aye" Abby: "The motion carries!")

2. The MRI technicians will not fuck up my arm like they did last time, rendering it useless for a short time, or, possibly, forever. (Reprise ayes.)

3. The MRI will reveal that there is nothing wrong with my brain at all, save my inability to solve complex math problems and my 85%-of-the-time poor taste in men. Most especially not wrong with it will be PML, the brain infection that kills you, rendering you --- unsurprisingly! --- pretty much dead. (Ayes.)

I'm so glad that we live in a country where we can make our own justice system.

in which i earn my honorary doctorate from the showtime network

2009-10-11T23:30:00.000-07:00

Enough terrified Internet hypochondria, since I've come down with something resembling the flu and am awaiting the sure-to-be-not-awesome results of some tests I had done on Wednesday, has convinced me that I have the bubonic plague. I don't exactly know how my investigation led me there; at first I was just googling symptoms and key words, and the next thing you know I was reading about how I was going to develop bubons, which would burst and spew forth their toxic pus all over my writhing corpse.

And a happy Columbus Day to you and yours!

Today on The Tudors a bunch of people --- let's go with several tens of thousands --- died of the sweating sickness. The sweating sickness was a mysterious, probably viral epidemic that swept across Europe in the late 15th century, and then again in the early to mid-16th century, when the show and its events are set. To this day nobody knows exactly what it was, what its causes were, or what the correlation between its appearances and disappearances was --- except that, interestingly, one of its initial presenting symptoms was fear. During one of the episodes, people are continually exhorting themselves to fucking calm down because they don't have the sweating sickness they're just freaking out. Henry VIII (played by Jonathan Rhys Meyers and his buttocks) looks into a window at night and sees himself turn into a gremlin. He dreams that he folds back the skin of a roasted salmon to find it's covered in maggots. He dreams he sleeps peacefully at night next to the corpse of his would-be bride, Anne Boleyn (and her corpse buttocks). (There are so many buttocks in this show, I can't even begin to describe.) Together with some of these Tudors, I took a few deep breaths. I mean, it's probably not the bubonic plague. It's probably just syphilis.

on the visual emergence of the elusive "head pore"

2009-10-09T12:50:00.000-07:00

I'm going to get a haircut today from my friend Rudy, who is a hairdresser --- so that seems like a good start, getting a haircut from a hairdresser as opposed to, say, myself. Since I'm losing my hair, I wonder whether I should just cut it all off, the way other women and sick people do when they are losing their hair. When they do it, they always look all militant and fuck-you and whatnot, but I know I would not look that way. Gigantic face + short hair = not a particularly good look. I would look like a festival balloon about to take flight. I know this because when I was eleven, I tried this combination, complete with Farrah Fawcett wings and a butt-part down the middle, and persons (albeit eleven-year-old persons) threw acorns at me and called me "Kara the chipmunk." Sure, that was mean, but let's be honest here: They were not wrong.

My other concern is that in the course of cutting it, pulling and blow-drying, Rudy will inadvertently just coax all the rest of the hair out of my head, and at the end will try to convince me that I am a fabulous bald person, which would also be, just objectively, incorrect. It stands to follow that not being fabulous with hair, I would certainly not be fabulous without. I imagine myself with a rhinestone-embellished skull and feel sad.

When I was in college I wrote a short-stort story about a woman losing her hair. It was a terrible, simply awful story, so of course I submitted it as part of my MFA application portfolio. Former self, did you really do that? (Former self: "Yes, I did. Sorry. I was a terrible writer. Eat me.") When I went up to Columbia to discuss my application with a professor there, a great person and talented poet who I will call Z, he smiled kindly and just sort of shunted that story off to the side.
"Let's discuss the other story," he said.
"You don't want to discuss both of them?" I asked.
"Let's just forget about that story," he said frankly. And then, to soften the blow, "For right now."

Upon finding the story some six years later, I was appalled that I had even been allowed to go to the MFA program at all. The story comes up with all the worst overdone images of hair loss: Drains are clogged! Palms are massaged, woefully, over barren scalps! Memories of sunshine! Jumping on the bed! Birds tweeting! Pores --- head pores! The worst part about the story was that it wasn't true --- it didn't ring true at all --- it just felt like someone who'd seen the movie Annie, inspired by the stylin' styles of Daddy Warbucks, had written three pages of whoozie-whatsit and then lain down for an energizing nap. If I were to rewrite the story now, I'd make it boring, and lame, because that's what losing one's hair seems to really be like. Don't worry: I won't rewrite it.

in which i flagrantly propagate the stereotypes of my gender

2009-10-07T12:41:00.000-07:00

You know how when you're a kid you tell yourself that when you grow up, god damn it, you're going to eat whatever you want? Cheetos for lunch, Cheetos for dinner! And Zach Morris will be president! I have descended there, to that dark place. My ten-year-old self (who, once, when left home alone, ate an entire container of whipped cream cheese plain out of the container) would be totally into this. Yesterday I had a cup of broth and a piece of frozen yellow cake, no frosting. That was breakfast and lunch, respectively. To round out this gourmet palate, some codeine, an iron supplement, prednisone, and a vitamin. No wonder I'm gray! Broth and cake? Come on, Kara. Your hair's falling out, your skin is gray, your ribs are showing, and all you've got is broth and cake? Even Marie Antoinette would be like, Honey, no.

What's good motivation for eating better? A baby. An adorable, tiny baby! Now, before you start panicking, I'm not pregnant. For the past two days, for my daily outing, I've been babysitting. On Monday I babysat a young person I've been babysitting for many months, a fine, mischevious two-year-old by the name of J___ who enjoys spearing my forearm with forks, jumping on his mother's bed, perfecting the high-five and the low-five, and eating hamburgers. But last night was my first time babysitting a new young person, one C____, aged seven (!) months (!). Per his mother's instructions, we went out on a walk with him in a sling on my stomach. He stared at the sky and I sang and told him jokes. Everywhere we went, people smiled at us. (People never smile at me! Not even when they know me!) When we passed by a pile of pumpkins, I compared each one to his head, which is rather large, for size. When we got home, I gave him a bath and put on his pajamas, and then I gave him his bottle and put him to sleep. I got milk and spitup all over me, and did not mind at all. Not that this is anything new, but, um, I totally want a baby. I know it's creepy. I know, I know. People who are going to have babies, however --- even if these babies are five years off --- need to eat more nutritious things than broth and cake. Today I have had some yogurt.

This morning, though, I woke up feeling terrible, like I have the flu and mono and Crohn's and crushed-by-anvil syndrome all in one. All these babies and their germs, maybe they aren't the safest daily outings for me, though it is nice to make some money. I'm so exhausted I almost canceled today's daily outing, except that it was a doctor's appointment. (The doctor, who was not a gastroenterologist but a gynecologist, was so weirded out by my gray appearance that she made me put on a mask for her own protection! (Me: "Don't worry, Crohn's Disease isn't contagious.") Wow, I'm moving up in the world.) Thank God writing is a sedentary task (and that I'm not babysitting again until Saturday).

on being caught by your boyfriend's mother when in a bookstore to purchase james dickey's "deliverance"

2009-10-05T13:09:00.000-07:00

Yesterday I ventured out for my daily half-hour outing. I try to leave every day to make sure I'm getting enough vitamin D. Weird things are happening to me; for example, my hair is falling out in clumps. (I asked my doctor if Tysabri, or staying in my apartment all the time, could cause this. Her response: "No, but being very, very sick can." Wha-bam! Monster-truck throwdown! She just has a way with words, what can I say.)

So I decided I would go to the used bookstore, which is about three blocks away, and look for this month's Book Cabal book. The Book Cabal was founded about three years ago when a bunch of people from my MFA program moved out to the Bay area, separately and coincidentally, at the same time. Every month we eat pizza at Ruth or Mike's house. One pizza has sausage and one has chicken. Yes, every month the same pizzas. For three years. I guess we just don't like vegetarians, or are trying to hold on to the meanness and pizzaness we once knew together in New York. There is a book involved each month. Some people read it and some people don't. There have been some major winners amongst these books, and some major non-winners as well. The month that we read Wells Tower's Everything Ravaged, Everything Burned, which, admittedly, had been my choice, no one finished the book except for me, who read it three times with sticky notes, then proceeded to give a nearly tearful oratory about what a spectacular work of art it was, how it was a firework in the bleak night sky of reading and so on, while the rest of The Cabal looked at their watches and moved mushrooms around their plates. If it were possible, I would like to form a union with Wells Tower. A union of any kind. But I digress.

In September, I did not attend Book Cabal because I was here in my apartment on ER watch. Only four persons, as it transpired, were able to make it to the Cabal, and it was those four persons --- trusted persons, mind you! --- who selected Deliverance as this month's book.
"Um, Deliverance?" I repeated over the phone to Ruth, who called me from Cabal to see if I needed a ride, post-Cabal, to the emergency room. (I did not.) "I'm sorry, I thought you said Deliverance. Ha-ha. Ha."
"Deliverance!" she confirmed. "It's sort of an adventure!"
Well, that's true.

The adventure continued yesterday in the bookstore, when, almost immediately upon entering, I ran into The Bay's mother. In the fourteen months or so that I have known The Bay and known his mother and known that his mother works in this bookstore, I have never seen here there. But of course it would stand to reason that the time I am there to look for Deliverance (oh, Cabal) I would run into my boyfriend's mother and have to tell her so. Hi there! Just sweet, trustworthy me, wandering around the bookstore, looking for a nice, sweet, girlfriendly afternoon read of Deliverance. Don't mind me. Oh, this? In my belt? That's a machete. Sometimes we housebound people need it for, you know, chopping down air between the bathroom and the bed. Additionally, I'm totally normal.

After first explaining what I was doing out of the house, I then of course had to explain what I was doing there, to wit, looking for Deliverance.
"It's for my book group," I explained abashedly. "I didn't pick the book, ha! Ha-ha!" I didn't dare mention that it's really a book cabal.
The Bay's mother, batting nary an eyelash, found the book in the mystery section, chatted with me a while, and was even nice enough to extend to me her employee discount. On Deliverance. Boy, is she nice.

I don't know about you, but if I were a mother of one single, solitary, precious son, I would be absolutely delighted if he embarked on a serious relationship with a decrepit older woman who first showed herself to be a workaholic; then a chronically ill person; then a person who lands herself in hospitals; then a person who becomes housebound like a modern-day Miss Havisham; then shows up at your own bookstore looking for a book on assault. I mean, it's really just a dream come true.

Lucky for me, The Bay's mom is a way cooler mom than I would be.

Cabal, if you're out there, pizza's on you.

from the annals of the victorian-era shut-in

2009-10-04T11:14:00.000-07:00

I guess being a shut-in isn't all that bad. If I go out of my apartment, I get a fever or my throat swells up. So I just stay in now. Actually it's really very Victorian. I even have a chaise lounge here! (Okay, so it's from Cost Plus, what's it to you.) In acknowledgment of our new lifestyle, Phillip has grown muttonchops and believes himself to have measles.
"Why, beardogs can't get measles, Phillip!" I told him jauntily.
He told me all the rules are changing.

I have been alternating between the following activities:

1. Writing
2. Reading books
3. Reading magazines
4. Reading cookbooks
5. Reading blogs about how other people's homes are delightful and stylish
6. Watching The Tudors on Netflix Instant*
7. Writhing around on the bed clutching at my abdomen
8. Taking my temperature
9. Cleaning

This morning I added a new activity, namely, gulping down codeine. My reasoning is the following: I'm a shut-in now. Now less than ever does anyone depend on me for anything at all. I don't even leave my house. Make an impression on anyone? Seem loopy? Doesn't matter. No one sees me! Therefore there's no reason at all why I shouldn't, every six hours or so, take some pain medication and make better use of my time --- writing, say, or even sleeping --- than crouching on my bathroom floor squeezing tears out and taking deep Lamaze breaths. The real question here is, why does it hurt so much? Aren't I supposed to be pumped to the gills with The Wonder Drug, Tysabri? Aren't I supposed to be so healthy I can barely stand it? I don't know if this has occurred to anyone else, but ever since I started taking this drug, I've been sicker and less a part of the real world than ever before in my life. Fifteen days until my next infusion! Boy oh boy, I can't wait.

*I finished Lost and now apparently have to wait until February to find out what happens next. Terrible anticipation. (Says the person who didn't even know Lost existed until it had been on television for five years.) So I started The Tudors. I had hoped The Tudors would be slightly drier, a little more PBS-meets-BBC than it is --- more, in other words, like history class or a book. Instead it's a lot of horses, Jonathan Rhys Meyers, and butts. Not complaining, I guess. The book that changed my life, coincidentally, was about the Tudors. I read The Six Wives of Henry VIII by Alison Weir during the summer after I graduated from high school. I read it on the Metro to and from my procured-by-simply-hanging-around-until-they-couldn't-get-rid-of-me political-magazine internship. History had never been so awesome. In the fall, I marched off to college, determined to major in all things pertaining to this time period. Turns out, nothing pertaining to this time period was available, but there was this thing called medieval studies, and it was rather earlier than the Tudor period and no one at the college seemed to be interested in it. One week later I was enrolled in a seminar called "The Barbarian North," reading about Huns and Jutes and wondering what the hell I was doing there. Fast forward four years and I had a degree in medieval studies and increased confusion to show for it. A degree in medieval studies? How had that happened? Who actually possessed degrees in medieval studies? God, it was terrifying and wrong. The thing I learned from Alison Weir's book, however, was not about the Tudors. It was that with enough narrative skill, one can make the real seem more urgent than it ever has been before.

another reason to feel good about staying home

2009-10-02T15:59:00.001-07:00

Dating Montage
by smithy00101

crime deserves a font size befitting its prestige

2009-09-30T21:51:00.000-07:00

For my birthday, Michelle and Nate gave me The Writer's Complete Crime Reference Book, copyright 1993. The word CRIME is in enormous font on the jacket. CRIME, people, CRIME! The beginning of the blurb?

"You're about to commit a crime -- on paper that is." Oh, how true. How true that is.

I decided this was a perfect book for me, since I am definitely going to jail at some point, although I'm not sure yet for what. "This will help me decide on a crime to commit, and how!" I announced cheerfully. They explained that the idea was that if I ever wrote about a crime, I could look inside and use the book as a reference. How will I ever get to jail now?

I am supposed to be in Maryland at this very moment, imminently on my way to Virginia to C & P's wedding. But where am I? At the Fort. All of my friends are going to C & P's wedding. Am I going? No. I am not going. Now that I am definitely not going, I have begun to convince myself that maybe, if I had gone, I could have lain in the grass beside the ceremony and watched from the grass; and I probably could have stayed up for a whole night, especially if I didn't eat or drink anything too challenging, and maybe I could have napped in the bathroom!; and I'm sure I could have driven from Maryland to Charlottesville -- I could just park and nap by the roadside... I'm sure I could have napped by the roadside...

What a douche I am. I am just not going, huh. Maybe I could go to jail for that! Things are looking up.

we're not allowed to cross the street, OR happy birthday, meatloaf and lesser (l'il) wayne

2009-09-27T09:38:00.000-07:00

Hi. It's my birthday. I'm not allowed to go outside by myself. It's my twenty-eighth birthday and I'm not allowed to go outside by myself. Clearly, I am making progress through the decades.

On the real progress front, Juan came here yesterday. That's right, she came here to the Fort. Immediately, improvements. Yesterday, a full month or so ahead of schedule, I ate not one (1) but two (2) soft-boiled eggs that were, to be fair, basically liquid, but nonetheless I ate them and they did not come up or otherwise out for a considerable amount of time. I have not had any more high fevers. Today I have even gained a pound. (Keep it to yourselves, I know what you're thinking.) I guess Juan, MD is a pretty good doctor.

Today we are going to see if I can leave my house. Maybe on a two-block walk. Not alone, of course! I'm not old enough for that yet. Maybe when I'm twenty-nine.

the continued adventures of Me, MD

2009-09-24T21:27:00.000-07:00

I'm tired. Aren't you tired? I'm so tired.

The doctors appear to be satisfied not to know what's wrong with me, now that we've gotten my fever under control, and I appear to have successfully begged off the hospital wholesale. Here's the thing about the hospital: It's not a place you go to feel better, it's a place you go to get better. And if I'm not going to get better -- which I guess is the consensus? -- I'd rather do it here in the Fort closet drinking my own Gatorade and playing Minesweeper without a tube in my arm, thank-you-very-much.

Visiting Pittsburgh-area hero Loring came by this morning and helped me on a mission to do some photocopying and post-office errands. For some reason I was obsessed with sending in this residency application on time. We all know I'm not going to get the residency and that even if I did, I might not even be able to go. But sending it felt good, like I was being responsible. And hanging out with Loring felt good. So I think it was worth it.

I can't eat anything. I mean I can't have solid food. Not for a while, anyway. I tried breaking the rules as usual -- just one little egg, surely, couldn't hurt! -- but was then quickly reminded why breaking the rules is not behavior befitting Me, MD, who is becoming my primary doctor. Here is another reminder of why we ought not to eat the things we ought not to eat. Word, Cookie, and I'm sure someday you'll learn about the subjunctive.

happy bought-time day!

2009-09-23T13:58:00.000-07:00

At the doctor's office this morning, I was given two options: Check into the hospital or don't check into the hospital. I had waited to go to the doctor instead of going to the emergency room last night, even though my fever went into emergency-room range. I hate, hate, triple-hate the emergency room. It is the dumbest place on earth, and the most expensive.

"Well, what's wrong with me?" I asked. They did not know.
"Well, what would happen in the hospital?" I asked. Nothing much, they admitted; I would be monitored.
"Then, I guess don't check into the hospital?" I said. "Is my answer?"
More blood was taken, some X-rays, some cultures and samples.
"But if you're not feeling better by tomorrow, you're going into the hospital," they said.
How could I possibly be feeling better by tomorrow? Way to delay the inevitable, champ.

Dear Hashem, Hi, it's me, Kara. I think I may be in the hospital for Yom Kippur. Please do not take major offense; it's not about you. Look: I'm even going to spend my birthday in the hospital! Doesn't that prove it's totally no thing against you? Please inscribe me in the Book of Life and try not to add all the parts about constantly being in the hospital. Also leave out the parts with douchebaggy colleagues. Actually you can leave in the colleagues if you take out the hospital. Thanks again, love, Kara.

tysabri update

2009-09-22T19:24:00.000-07:00

Have spent the day barely able to lift head. Some fey vomiting occurred. Crawled around. Fever: 103. Managed to avoid passing out by emptying a packet of sugar onto my tongue and sticking my head into a bucket. After four hours of trying to get a hold of a doctor, got a hold. Watching temperature. If it goes up, I'm a-goin' to the ER, Maw.

Tysabri, I trusted you. You said you loved me for me! But you're just like all the others.

tysabri!

2009-09-21T21:52:00.000-07:00

11:30 am: Arrive at infusion center, loaded down with computer, computer charger, three novels, notebook, ultimately unusable camera, and purse. What do I think I'm going to do in there, write the entire New York Times book review section? This is more baggage -- probably literal or metaphorical -- than the combined wares of everyone else there. On the other hand, almost everyone else has a companion with them, which in a helicopter-losing-gas scenario would trump my bags in a list of things to be tossed overboard. Feel better.

11:40 am: Sit in waiting room literally squeezed between two ladies who both look like they might throw up. Feel like I might throw up. Drink three 12-oz glasses of freezing water in a row to avoid imminent IV mishap.

11:50 am: Taken to "vitals" area. Blood pressure, oxygen intake measured. Height and weight measured. Apparently I have gained six pounds since morning. Assistant comments on what an "awfully big girl I am." I am all out of patience. "And you," I say to her sweetly, "are awfully devoid of tact." Ice-out for the rest of the vitals, including my temperature-taking, which yields a result of ninety-four degrees. Ice, ice baby. Inwardly pleased at the poetry of this, even though I know this is just because I drank that freezing water.

12:00 pm: Led past room after room of infusion chairs where people are getting all kinds of treatments. Some are sleeping, some are vomiting, some are reading. In my room two men are talking about Remicade. The others are just sitting there. One is asleep. From context I count three other Crohns in my room, but no one getting Tysabri except for me.

12:10 pm: My nurse comes in to quietly remind me, per her legal obligations, that I am going to get PML and die. "Sounds like a plan," I say. She takes out a tray of needles and begins to survey my left arm. She begins rubbing it furiously with alcohol. I believe myself to be keeping perfectly calm until she manually opens my fist and tells me to relax. I have made such a tight fist that I have drawn blood from my palm with my nails and it is starting to gather.

12:15 pm: The IV tube is in an impossibly deep vein in the middle of my arm. I frankly do not know how this nurse gets it in there. It takes ten minutes to suction a tube of blood out of it, however, because it is not "acquiescing." During this time my heart rate goes through the roof and I am asked if I have ever heard of a drug called Xanax. My palms get taped up. Once the nurse leaves for a minute I start to cry, with no noise. I am not sure what I am terrified of here, but I am terrified. I think I am mainly terrified of losing use of my other arm. No one sees me but the other Crohns, who look away.

12:30 pm: After some time of saline, the Tysabri begins. Several glass bottles of "emergency medications" and an inhaler are placed by my chair in case of, you know, whatever. The gregarious Crohn next to me, a North Indian gentleman in his early 60s, begins to talk to me. He is getting his first infusion of Remicade. He has had Crohn's for three years. I tell him I used to take Remicade, too, that I have had Crohn's for eighteen years. He tells me he thinks he is a different person now. He tells me the worst part of having Crohn's is that his friends and family are satisfied when he tells them he has a happy life.
"I don't have a happy life now," he says. "But it is a secret. Not because I want it to be, but because it has to be. But when I say I am happy, that's all they need to know. They don't really want the truth." I nod. He is exactly right.
"Tell me something," he says. "Do you have any advice after eighteen years?"
"Well," I say, watching his Remicade drip into his line, my Tysabri into mine, "you've lived a lot longer than I have."
"I'm beginning to think that isn't true," he says.

1:15 pm: My neighbor, with whom I have been having a conversation all this time, sends his son out for a chicken parm sub, and when it returns -- replete with a basket of fries -- all of the Crohns pretend not to look at one another in abject confusion. My neighbor offers me half, and when I decline, he proceeds to eat most of the offering. The whole infusion room smells like chicken parm and somebody retches. My neighbor is nonplussed.
"I used to be" -- he makes a gesture across his leg about three palms wide -- "big, strong, full of muscles. Now I am just a tiny thing, like a child. When I look in the mirror I hate what I see. I don't know myself."
"I am from hearty stock," I say, about five minutes before my eyes apparently roll back in my head.

1:25 pm: I am eating a force-fed saltine.

1:30 pm: Tysabri complete! Now, for an hour, I will be observed.
"Like a lion," I say, suddenly in better spirits, but none of the Crohns nor the nurse laughs.

1:45 pm: The saline hurts worse than the Tysabri. I am trying not to look at the IV site but good god that mother runs deep. The palms don't look so great either. Maybe I really do need Xanax. My next-door neighbor leaves, and when he departs, all the cancer patients in the room who had been pretending to sleep open their eyes and exclaim things like, "Thank God!" and "What a chatterbox!" I think they are smarter than we are. One of them asks another what deli she thinks that chicken parm came from.
"That deli is on my shit list," she says.

2:30 pm: IV comes out and a large, bright red bandage gets roped around my forearm, like I am some kind of South American revolutionary. "All set, bye!" they say, and then I realize that I have to get myself and all my untouched baggage home. Am suddenly wishing I brought a horse or other vehicle.

3:45 pm: Home. Feeling fine! Bake a pie. That's right, I baked a pie.

4:30 pm: Did I say I was feeling fine? Lie on kitchen floor with face on cool, dirty tile. Tile so nice, so nice.

5:00 pm: Vomiting, fever, and wiped out. Pretty sure this is Crohn's, not Tysabri.

5:30 pm: Trying to write. Can't remember name of protagonist. Oh God, I have PML already. I'm dying! I'm dying! O, Camille!

5:31 pm: Remember name of protagonist. Um, never mind.

6:00 pm: Assure parents that I am totally fine. Don't mention pie.

Final verdict: First Tysabri infusion a total and complete success!

I have a happy life.

24 hours to Tysabri, or Why I Should Be Incarcerated

2009-09-20T11:02:00.001-07:00

Ground control to Major Tom. In approximately 24 hours, I am going to get my first infusion of the dreaded/much-awaited/bless-ed/a-feared Tysabri. The countdown be on.

I'm not that scared anymore, and I'll tell you why. Options scare me. Honestly, I think I would be the most incredible high-security jail prisoner ever, seeing as I hate options and I absolutely hate not following directions to a tee and/or breaking rules. I don't look so great in orange, but frankly, I challenge you to find a color that I do look good in. Don't say paper-bag.

But my options appear to be down to just one. When I thought that I had the option -- dubious though it may have been -- of just staying on prednisone until the Powers That Be came up with a safer treatment, it seemed scarier to take the Tysabri. Sure, prednisone doesn't stop the progression of the disease; it just manages the symptoms. But surely it couldn't be too long before somewhere in a beep-boop-bopping scientific cave, probably underground or in Menlo Park or something, somebody called out, "Eureka!" and offered up a big plate of No-Crohn's on a golden platter. Out of a the cave would shoot the disembodied shoulders and vocal organs of KISS! They would break into song! We would all dance! Um, I mean... right?

Except for the first time in eighteen years, Prednisone, my BFF (FFFF), isn't working. The symptoms are back, and bad. We're talking blood on the BART -- serious blood; clothes-soaking sweats in the middle of 70-degree afternoon weather; the cuts (where do they come from? where is the rototiller?); and, most interestingly, a total body shutdown after 10 pm. (That's Pacific Standard Time for once, thank God.) More mysteriously, the Prednisone actually seems to be causing some harm: Heart palpitations, panic attacks, acne (okay, fine, one tiny, barely visible acne, but this is coming from someone who didn't even blink an eye through the Oxystride moments of her peers' adolescence), and of course The Face That Nearly Detached Itself From Its Body and, Balloonlike, Flew Away Into The Atmosphere. Not that The Face is harm, per se. I mean, hell, The Face is Prednisone's job, am I wrong?

If the only option -- really the only, only, only option -- is Tysabri, then I want it. And tomorrow, after another visit to see the hand doctor, I am going to be one lucky girl, because I'm going to get it. I don't use the word "lucky" sarcastically.

If it is allowed, I will try to get a photo tour for you of Getting Tysabri. Frankly, I don't think this photo tour is going to be much different than the tour for Getting Remicade or Getting Saline, but you never know, there may -- may, no promises -- be a troupe of dancing gnomes. Or they may unmoor my exacerbated head from its bodily prison and let it rise up, up, up to the ceiling tiles, where it will bobble about confusedly for the duration of the treatment. In which case, lucky Crohns, we will all get a bird's-eye view.

if only I didn't read so much

2009-09-16T18:43:00.000-07:00

On our second to last day in North Dakota, yesterday, I was reading during slow traffic when there was no data to collect. One of the CBP officers sauntered up to me.

Officer: What are you doing -- reading?
Me: Yes.
Officer: What are you reading -- like, a romance novel?
Me: No, just a regular novel.
Officer: Yeah, right. Women only read romance novels.
Me: Then it must be a romance novel.
Officer: Well, what is it?
Me: It's called Cloud Atlas. It's by this guy David Mitchell.
Officer: What's it about?
Me: It's kind of like linked stories, like a book inside a book.
Officer: Well, that's fucking retarded, isn't it?
Me: Not really.
Officer: Are you one of those girls who just reads all the time?
Me: I guess so.
Officer: Don't do nothing but read?
Me: And some other stuff.
Officer: See? And where did it get you? You're standing there writing numbers on a clipboard! Maybe if you didn't read so much, you would've gotten farther in life!

Indeed, sir. Indeed.

Good to see you again, San Francisco.

tyrranosaurus audio

2009-09-14T20:00:00.000-07:00

Good evening once again from picturesque North Dakota, where I appear to have stress-eaten myself into a dilly of a Crohn's pickle. Perhaps tomorrow I will be reborn as a dolphin, a gleeful, braying dolphin, whose appropriate relationship to small edible fish and its "work" environs make it gnash its delicate scissorteeth in amusement. The only drawback to being a dolphin tomorrow: If I'm still in North Dakota as a dolphin, in all likelihood I'll be beached as crap, and therefore dead. And I will still be in North Dakota tomorrow; that I can assure you.

The Internet, which has already been sullied by so many boobs, bad rabbi jokes, Wikipedia entries that end up in student citations, and so on, now has another terrifying item: My weird voice, online, reading a story about dinosaurs. This has happened because the very supportive editors at Narrative are incredibly nice to me (and maybe because they like people with Crohn's Disease? because the story mentions it by name). In the picture on the webpage, I look like more of a douche than I perhaps ever have, but they kept pressing me for different pictures -- "more candid pictures" -- until I concluded that what they really wanted was a picture of me looking like a douche. And behold! Out of options, I sent along a picture of me looking like a douchebag, and what do you know, I was right. Because they stuck it right up there. There is a preview you can listen to in which I stutter like Screech from Saved By The Bell. Imagine me also pulling up my pants with one hand, avoiding the eyes of the National Book Award winners in the front row of whom I was terrified, and swallowing blood. Total. Class. A week after the reading, I was in the hospital. But you wouldn't know it from the douche picture.

If you'd like, you can listen here.