On Being Fat

Here's the end of my Fat Studies paper on The Silence of the Lambs:

"To be a “big, fat person,” then, is to be simultaneously impotent and un-feminine, it is to only be worthy of male attention when on display as a mutilated victim. To be fat is to be alone in the pit with no hope and no power. To be fat is to have a mother who will not describe your body. To be fat is to be coveted for your skin and not your whole self. To be fat is to be an inappropriate embodiment of womanhood, to be rescued from your squalid pit by a sexually attractive functioning subject of the patriarchal structure. To be fat is to be the fatted lamb, bleating in a pit, “Fuck you! You bitch!” while the more appropriate woman stumbles around in the dark."

This is not what it was to me to be fat. Being fat was the avoidance of the male gaze. It was wearing whatever clothes I wanted without worrying about the wrong message. It was to be considered jolly, sweet, non-threatening, friendly, maternal, soft, loving, wise--and to be taken for my merits instead of my assets. It was to be valued for my cleverness and not my measurements. I do not care if I am beautiful. I recognize that I have been called that word many times. But I will never identify as beautiful, and though I recognize beauty in the bone structures and color schemes of the women in my life, I do not value it. It is either the possession of something not worked for or it is the preference of straightening irons and surgery over books and comfort. And very often, it is the performance of self-loathing.

I didn't realize that self-loathing part until after the Disease deflated my body a bit. I loved my rotund mounds of flesh. I hated the sagging skin left behind by rapid weight loss. I bought LOTS of lotion. And belts for my funny, high, wasp-waist. This is because I needed self-soothing to deal with the dreadful new body. Since things have evened out a bit, I love my body again. It is soft, after all. It has mass and takes up space. It is the home of my brain.

I still identify as a fat girl. Yesterday, though, I took a picture of myself that made me realize once I'm down one more dress size, that fat-girl identity will be wrenched away from me. I do not know how well I will do without it. AND, now that I can shop in the Misses department in earnest, I find that the male gaze is turning my direction again. It burns my flesh. I cannot be sweet to strangers in the supermarket anymore, because there is a gap in the perception of that sweetness. I think I am only kind. Men (and sometimes, their wives) think I am only becoming. I really ought to make myself a t-shirt that reads "You and I will get along a lot better if you'll just think of me as one of the guys."I would wear it with tights, a pencil skirt, and a sweater. And then I could help single redneck stranger-men pick out hairbows for their daughters without being asked for my phone number.

Pathos, Pain, and Percentages (Or, My Masochistic Machismo)

I don't know how the cat knows. Maybe I start to smell weird. Maybe he's as good at reading my face as my grandmama is. Whatever cat hoodoo he's using to divine my pain level, it's incredibly accurate. He adds his weight to the heating pad. He licks my worst ankle. I am grateful for his attention.

To make a long story very short, I've condensed this summer's events into a numbered list:

1. I gave myself pancreatitis this summer because I stopped eating.

2. I stopped eating because of a particularly nasty flare of my Ulcerative Colitis.

3. The UC flare was caused by an urinary tract infection.

4. The doctor who found the UTI neglected to run a full blood panel and sent me home with pancreatitis to writhe on my couch with the most painful condition a human can stand for a full week before my mother forced me to go to a different ER.

Now that we're caught up, I need to tell you what the other not-incompetent ER doc told me, "I know you're in a lot of pain, but some people with Ulcerative Colitis present this way while flaring." If I had been able to draw a deep enough breath, I would have laughed in his face.

Just to make sure we're all on the same page, I will tell you what Ulcerative Colitis is. I will not discuss the more unpleasant symptoms. If you want to be thoroughly grossed out, google it. Ulcerative Colitis is an autoimmune disease which effects the colon, joints, eyes, and less frequently, the liver and skin.

What that means: my immune system is homicidal. It interprets the good bacteria and food inside my large intestine as an invasion force. So, like any strong, healthy immune system, it bombards the living shit out of the invader until the invader backs the fuck off. The problem is, I need food and bacteria to live. In its war on those things, it creates millions of open sores along the full length of my intestine. In addition to this joyous circumstance, my super-strong-yet-entirely-insane immune system also attacks my joints and causes my eyes to swell. Some days I can barely wear shoes and can't manage my contacts at all.

Now that we all understand the science, let me tell you what it feels like:

Take an empty sausage casing. Stick a million razor blades through it. Twist.

Ask your best friend to jump up and down on your ankles.

Poke yourself in the eye.

Better yet:Acquire road rash. Scrub road rash with steel wool. Then give yourself epic food poisoning.

Now you understand what it's like every time I eat during a flare.

And that's all pain I can put into words. The pain of pancreatitis isn't like that. It is unspeakable. It is death in your belly. It is boiling alive in acid. It eats you up.

The problem with my face is that it's too expressive. My instructors always know when I am thinking something. If I know I am going to make a face, I can control it. I walk around most of the time pretending it doesn't hurt, that I'm just an average 27 year old woman. I actively think, "When you hurt, you show the tension in your eyes first. Smiling creates similar lines. Smile and people won't notice." This works out most of the time. It takes a discerning eye to see the pain on my face. My grandmama can always see it. My friend Kara, with her artist's eye, can see it sometimes too.

I go through a lot of trouble to carry on as if things are normal. Because I don't want to talk about what it's really like. Because I want to win. Because I want to understand myself as someone who is strong no matter what. Because I despise weakness--most of all, in myself.

Tuesday my doctor asked me what percentage of the time I spend in some kind of pain when I'm flaring. It never occurred to me to consider it in those terms. But there was a time before the pain, when I never hurt at all. Now the pain is a person who lives inside my body. I am not without her, and she is never far from me.When I asked my doctor what I could do to help my left ankle, which is by far the worst of my joints, she told me that my colon and my joints are "wound up tight like a ball of snakes." My tattoo nearly tingled, because those snakes are just going to keep eating each other up until I die. And I deceived myself if I ever thought any different. I just need to smile through it, give myself a chance to value my own strength, keep my life stress free, and eat plenty of calories--even when every bite becomes a sacrificial gesture on behalf of my daughters. Because food is not my enemy. Anorexia is. And right now, she's eating me alive.

I can't let her win. I can't retreat to my heating pad and sleep through the flare. I must stay up to stay alive.

Why I NEED a New Tattoo, in 4,000 Words or Less

If you're just joining us on DiseaseTalk with Denise Disease, we here at Set Your Jaw recommend that you reference these three posts:

"Well, fuck."

*various words on why I hate my body*

"My Tattoos, Myself"

In fact, it would serve you well to read all posts from March 2011. There's some interesting back story there, anyway.

Jessica Weisenberg is a sensible girl. It's true. My Aunt Ruth told me so, and she never lies. Jessica does not spend money on herself frivolously. She turns in her homework on time and she braids her daughters' hair before bed so it won't tangle by morning. She is the picture of femininity because self sacrifice is the apex of the feminine existence.

Okay, maybe none of that is true. Certainly, that last bit is not. 

Lately I find myself to be quite a bit less pragmatic than usual. Instead of buying myself clothes that fit, for example, I bought an iPad and a new tattoo. Why? Well for one thing, I'm still losing weight. Secondly, iPads and tattoos are forever and frankly, I don't care enough about bodies to keep clothes that long. Thirdly, we're all going to die, people. Your family, friends and children, they will die. This is true. I've been a little closer to it than I hope most of you have, and let me tell you: there's nothing there but nothingness, so you best enter into nothing with the best, least regretful self you can manage.

The tattoo I am getting is AURYN from The Neverending Story. I'm going to go against my nature and tell you why in as explicit terms as I can bear:

1. AURYN, the thing itself

As a child I knew I was, for lack of a better term, Other. I was a bastard, a girl, very smart, very poor, imaginative, outspoken, and I had many, many reasons to be precocious in ways I wish no child ever had to be precocious. I watched The Neverending Story approximately 15,000 times. Because the fantasy appealed to me as means of escape.

Later, when I began to realize I would be a poet, my greatest fear became The Nothing. I have many references to Nothing in my notebook. Sartre is responsible for some of them. Sebastian is responsible for the rest.

I began to rekindle my admiration for AURYN wholeheartedly when I was diagnosed with an autoimmune disease, because of the concept of eating ones' inverse, which I equated with microscopic cells eating my full vibrant life--but also because is an infinity symbol, ouroboros and pisces all rolled into one. 

2. The Earthling Symbol for Everything

Many years ago, I was introduced to a girl who said, "You must be the infinite Miss Jessica." At least, that's what I thought she said. It is entirely possible that she said "infamous." Infamous would be more likely. Nonetheless, I heard Infinite. 

At the time, I was 18, at a creative low point but rapidly racking up experience points. I realized, whether or not it was true, that I considered myself infinite. I was sure the universe provided infinite substantive amusement. I was sure I would never run out of thoughts. I was sure I would never run out of words. Then I wasn't 18 anymore. And I was scared I'd lose my infinite qualities. I began to think of every day of my assimilation into adulthood and the middle class as a sanitation process, whereby the bacteria which provided my access to the Force was bleached from my being.

I am not worried about that now. My deep brain is full enough of gender/class/race that I know I'll always have one thing or another to consider and many things to make from each consideration. So maybe I am infinite after all.

2. The Ouroboros

If you didn't already know, the ouroboros is an ancient alchemy symbol which represents infinite creation and destruction, much in the same way my cells will infinitely keep destroying each other and recreating themselves. Really, there are too many things to say about this guy. So, I'll let Carl Jung do it:

The alchemists, who in their own way knew more about the nature of the individuation process than we moderns do, expressed this paradox through the symbol of the Ouroboros, the snake that eats its own tail.

The Ouroboros has been said to have a meaning of infinity or wholeness. In the age-old image of the Ouroboros lies the thought of devouring oneself and turning oneself into a circulatory process, for it was clear to the more astute alchemists that the prima materia of the art was man himself.

The Ouroboros is a dramatic symbol for the integration and assimilation of the opposite, i.e. of the shadow. This ‘feed-back’ process is at the same time a symbol of immortality, since it is said of the Ouroboros that he slays himself and brings himself to life, fertilizes himself and gives birth to himself. He symbolizes the One, who proceeds from the clash of opposites, and he therefore constitutes the secret of the prima materia which unquestionably stems from man’s unconscious.

4. Pisces

Yes, my birthday does fall on the ides of March. Yes, that does technically make me a pisces. No, I don't believe in astrology. Because I believe astrology, like all other beliefs outside of my own belief system, is bullshit. Please, let's not pretend any other kind of believer (or cynic) thinks differently about their beliefs vs. other beliefs. If it weren't bullshit to them, they'd believe that thing and not the other thing.

I do, however, believe in personalities. As for myself, I am an INFP. What astrological sign corresponds to the INFP? Why, Pisces, of course.

In addition to the COINCIDENCE that my personality lines up with my sun sign, (and I cannot stress the word COINCIDENCE enough,) I identify strongly with the duality of pisces.  You see, the fish are supposed to be swimming in a circle of fantasy/reality, which is what I am doing all the time: Bookkeeper Jessica -->Arty Jessica --> Mama Jessica --> Poet Jessica --> Filial Piety Jessica --> Least Possible Scenario Jessica --> Pragmatic Jessica --> English Major Jessica--> White Trash Jessica --> Masquerading as Middle Class Jessica--> PTA Jessica--> Chanteuse Jessica...ad. infinitum. Frankly, it's exhausting. But I've come to the point now where I realize that most of us can only ever hope to be self aware versions of the stereotypes we always were but thought we weren't. 

So yes, a tattoo. To symbolize my defeat over the HellSummer. To tell myself I've accepted my disease and it's time to move on from letting it ruin my life. To remind myself that I am strong. To symbolize that however much time I spend eating myself, I am recreating myself in equal proportion. 

In ten or fifteen years, after I get cancer, lose my colon, and I become okay with all of that, I will get another tattoo. It will be this:

Because then I will have become a master of death.

The Apotheosis of Eve & Her Sister

They confer in secret sister syllables,

But Lilith will say it aloud, if I ask.

She will say that God never made green,

That green is a wavelength. Green is a frequency.

Eve will laugh.

But I do not ask.

When we get home, Eve will take my face

In her hands and tell me I'm her favorite mama.

I will stare into her eyes and see her there,

As she was and is and is to come.

I become Theotokos.

They become mothers of all that I have thought,

The jewel-toned bearers of what I dreamt,

As we, the three, hovered over the waters.

Yes. It was like this when the world was made.

"There's no glitter in the gutter. There's no Twilight Galaxy."

I typed a whole post. It was really good. But the internest hates me. So I'm replacing it with a crappy post. Sorry guys.

First, let's get caught up...

June:
Pancreatitis. (It's the most painful thing ever. No...really, ask your doctor.)
Mother Bitch of All Urinary Tract Infections. (Took six bags of IV antibiotics and three oral doses of anti-Bs to kill the Bitch.)
Seriously devastating Ulcerative Colitis flare.
An additional twenty pounds of weight loss, bringing my total weight loss since the end of January to almost 60 pounds.
A month in bed.
Serious muscle atrophy.
Crippling depression.
Problems in my personal life that I don't want to talk about. Ever.

July:
Got out of bed.
Got myself an antidepressant.
Got myself some awesome insomnia as a side effect.
Got sore walking around my house.
Getting stronger everyday.
I hate my new New Edgar Suit even worse than my old New Edgar Suit. I have batwings, which is not as cool as it sounds. Put me in a knee length belted black dress and I feel pretty good about my body. The rest of the time, I am miserably self conscious.
My pancreas still feels like it went a couple of rounds with George Foreman, Sr. AND his grill. This is what happens when an organ tries to dissolve itself in acid.
My Ulcerative Colitis is in remission, for the first time ever.
Because of the remission, despite the residual pancreatic pain and lack of physical strength, my body feels better than it has in half a year.

Some stuff about feelings:

It's easy to forget, when someone strong becomes weak, that eventually they will gain their strength back. This is why you must always double tap zombies. After they aren't stunned anymore, they'll be stronger than you again and then they'll eat your effing brains. That's what zombies do with their strength. They eat brains. I don't eat brains. I'm only allowed 25 grams of fat a day (which, if you didn't know, is about 1/4 of a cheeseburger) and I'm afraid most of the people in the world have big lumps of fat for brains. I'd be back in the hospital if I ate brains. Here's what I do with my strength: I hold up the sky.

I know this about myself, because as I was writhing in pain, too weak to even stand on my own, watching my body and resolve melt away, my entire life came crumbling down on top of my sick bed. I was too weak to stop it or move out of the way when it happened. I just laid still and let it crush me. There wasn't anything else I could do. I have never been so helpless as I was in the month of June. So those who loved me helped me until they couldn't anymore. Those who were selfish helped themselves and could not see how hard I was trying. Because, you see, it's easy to forget, when someone strong becomes weak, that eventually they will gain their strength back. I did not forget. I remembered, even at my weakest points, that strength is not ever-lasting, but it is regenerative. I am strong again. And again, I am holding up the sky. This is my job, you see. I am the Atlas of my own world. I have been since I was old enough to Know.

What I learned through this horrific, ridiculous summer is that there is no place in physical illness or ensuing depression for forgetting that the only place of refuge you can always depend on is the fortress you build for yourself. When the sky falls on your head, you can either be a Titan or Chicken Little. I know, it sounds like some goddamn Chicken Soup for the Soul bullshit, but it's true. There is no hero but you. There are no search and rescue teams to dig you out of the rubble. No one will save you but yourself. If you're really lucky, like I am, you'll find there are people in your life who can soothe you when you stagger under the weight of things. Maybe they'll bring you flowers or apple slices when you are sick. But you must always remember: They cannot bear your load for you. If you have a sky to hold up--and not everyone does, because not everyone is strong enough--then you have to use your own strength. Keep that in mind, people. Someday, it might save your life.

On Whether or Not It's Lady Like

Gender Theory: I love it.

No, really. I LOVE IT.

Why do I love it so much, you ask?

Here are some reasons:
"You're beautiful. Really beautiful...but women are supposed to have long hair." --7 foot tall high school senior, Mr. Football Player Guy. (He said this to me when I was a freshman, brushing my hair out of my eyes while he did so. True story. I blushed first, then choked on the other half of the statement.)

"Boys will never like you unless you learn to keep quiet." --Friend's mother.

"I don't even know why you'd want to get married. How are you ever going to submit to your husband?" --Same friend's mother.

"You'll never get married unless you get submissive." --Other friend's mother.

"It's just hard to decide between the girl I can have a conversation with and the girl I'm attracted to." --Dude friend I had begun to crush on, until that moment.

"Why can't I find a smart, hot girl in this school?" --Dude friend in whom I had no interest beyond Conciliare.

"J is a boy. She likes boy stuff, so she's a boy." --My four year old daughter, speaking of my six year old daughter.

"Isn't it hard for you to run this record store by yourself? You know, because women aren't as bright." --Customer. (My response: Get the fuck out of my store.)

"Where's your daddy? No daddy? Well, where's your husband? I want to do some business." --Various Customers X 3. (My response: I'm the boss, here. You're welcome to do business somewhere else, if you want.)

For contrast:
"I think your whole empowerment thing is super hot." (My husband of eight years. I'll leave my response to your imagination.)

I have other reasons too, of course. Including, but not limited to: my daughters, the unfortunate popularity of the Twilight series, plastic surgery statistics, the APA report on the sexualization of young girls, my mother, my sisters, romantic comedies, dude friends, girl friends, the irrational bias against homosexuality, rednecks, Fox News, misandry, the objectification of sitcom men, the infantilization of EITHER sex, the designation of men as pigs or fools, AND the idea that masculinity is threatened if a man isn't a "man's MAN."

What, you ask, is an example of a man who isn't a man's MAN? He is arty, educated, loves musicals and romcoms, reads books, has complicated opinions on politics, hates sports, doesn't have a damn clue how to fix anything, wouldn't be caught dead in Hooters, likes babies, loves gossip, doesn't care who makes more money and thinks empowerment is hot. Who is this mythical non-man's MAN man? By this definition, my husband. Now, my husband also provides for his family and would never ever dye his hair or paint his nails. HOWEVER, if he did, he wouldn't not be a man. Fingernail polish is not penis remover. I REPEAT: FINGERNAIL POLISH IS NOT PENIS REMOVER. So, what's the reason for this mostly meandering rant?

TOEMAGEDDON 2011. John Stewart, in collaboration with a fb friend, is the reason. Apparently, a J. Crew ad which featured a mom laughing with her son after having painted his toenails neon pink, has drawn some fairly insane criticism from the mainstream media. One Fox News contributor called this "an assault on masculinity." Painting a 5 year old's toenails is an assault on masculinity. That's what he said. Here are some equivalent statements: Letting your daughter play tee ball is an assault on femininity. Dressing your infant in yellow is an assault on heterosexuality. Giving your son a teddy bear is an assault on masculinity. I could go on and on. There is no civil rights issue that doesn't fit into this model. Specifically, there is nothing folks haven't been historically prohibited from doing that couldn't worded in this way. It's the model of ignorance everywhere: Electing a black president is an assault on the white population. The existence of Islam is an assault on Christianity. Immigration is an assault on the current population. Gay marriage is an assault on heterosexual marriage. These ridiculous accusations are statements I heard less that two weeks ago while sitting in a cafe in my hometown. My grandmother loudly asked me if we should leave since "they let all kinds of horseshit in." I said no, since she had already ordered. But I wondered aloud: "How does it hurt my marriage for someone else to marry? How am I affected if migrant workers pick fruit in California? How is my race diminished by the prominence of one member of another race?" The old men at the offending table stared at us, ate quietly, then left.

I am not even-minded enough to think we aren't in a culture war. I think maybe all open societies are in perpetual states of culture war. That's what keeps us in balance. That's what keeps outrage over fingernail polish from turning this country into Iran. They don't like polish there, either. Sometimes they put people in jail over it.

I know I have to fight every day to make sure my daughters are able to call bullshit when they're spoonfed the same hegemonic ideals I swallowed about what it means to be a woman.

I didn't know to call bullshit until I was 23. This caused a lot of misery, because if there is any place where I don't excel, it's traditional femininity. Maybe that makes me a gender bender. I think it makes me well-rounded. I'll keep to my action movies and maybe sometimes I'll watch a romcom because my husband likes them. We will remain perfectly balanced: the man's woman and the woman's man. And we'll be happy. Maybe the little boy in the J. Crew ad is happy. It's possible that he's a little culture warrior, too. But then again, he's 5--he's probably enthralled with the wonder all around him, and happily ignorant of the truth that there are those in the wide world who think his toenails have something to do with sex.

An Open Letter to the Wife of My Mother's Ex-Husband.

Dear Madam,


It would be easy for me to call you trash. It would be easy for me sit on my leather couch, in my nice home, with my educated, productive husband and my gorgeous, excessively intelligent daughters and tell myself that I don't associate with trash. It would be easy to tell myself that I am a well-adjusted, well-respected, generally successful person, or even to chant to myself that I am a liberal feminist with an I.Q. of 155 who could wear your sons' testicles as garter belts if they tried to engage me in scholarly debate, if they did anything but mispell, misuse and name call. It would be easy sit in silence and console myself with the knowledge that there is not a single way in which I am not superior to you...but I've never been much for easy, anyway.


The truth is, I've always thought of you as a woman of average intelligence. My estimation in that regard has fallen somewhat now that I know you think you need an apostrophe to make a word plural. Still, it would seem that you are at least intelligent enough to know the story of your own life, and thusly, that you should know the sources of your shame. I will not add additional shame by recounting who you are and what you've done. I simply mean, here, to respond to some of the things you said, in public, on DW's facebook status, about me.


First of all, with regard to the assertion that I need to remember where I came from, I would like to reassure you that there is never a day when I forget. My husband says that I should not write this, now, and especially that I should not send it to you. He says that I am out of my hometown culture in my real life, and that I need to get out of it in my head. He is right. But I do not toil under the weight of guilt for abject hatred. I do hate that town, and several of its inhabitants--because I still care about it, because I still think it has potential, and because really, deep down, I believe people need to be delivered from its dominant doctrines. And, most of all, because I care about some of the people I was a girl with and I don't want to see them waste their lives in factories. As to the metaphysical implications which rest with that missive: I will never forget that I am the bastard child of a crazy woman. I will never forget that I am very odd, that I was trailer trash, that I use my intelligence to overcompensate, that I think more highly of myself than I ought. I assure you, ma'am, there are other things I will also never forget.


Secondly, it is true that I have never lived anywhere but Arkansas. I abandoned my opportunities. My siblings were still at home, you see. I felt my honor was more important than my ego. I felt loyalty to those to whom I found myself committed.


I have no doubt, however, that no matter where else you have lived, your mind stayed right at home, in Alma, in the smallness of the small town's delusion of grandeur. There are, after all, Almas all over the country. I am, in that respect, more well traveled than you--no matter where I have lived. You said that people from all over think I am a redneck. I don't care if they do. Redneck isn't about physical location, it's about the culture of ignorance. I am close-minded, yes, but no one could accurately describe me as ignorant.


With regard to your "medical license" as evidence of your intellectual prowess, I was very glad when my sister told me that, in your 40s, you had finally found a vocation. Kudos on making yourself better than you were before. I mean that in all sincerity.


I am sorry that you took offense to the term "Common Man." I thought I was very kind in my little concession speech. There is nothing wrong with being common. Most people are common. You should consider yourself lucky to be counted among them, and that here, on this blog, no one knows who you are and will be substituting some other common woman's face with yours. Maybe you will be lucky and they will use the face of someone who has moral fiber.


With reference to the last name: if I were you, I would fall before my feet and worship me, because someday, someone might mistake your youngest son for one of my relatives. I was the first good thing that ever happened to that name. I became so fond of the idea that my teachers praised me for surpassing my "dad," that I kept it. My legal name is hyphenated. I considered it "hailing the subject," a term which means to appropriate a negative word and reverse its meaning, applying it to oneself in a positive way. It, like you, reminds me of where I came from. I love to be reminded of how much I have overcome. There is no better food for my ego than thinking of you, of your husband, of your culture.


For the record, I did not call your son a redneck. I said his attitude caused him to be "stuck in redneck hell," which was not a slam. It was the truth. I do appreciate that you people all stand up for yourselves, even when it is not necessary. I was making philosophical conversation with an old friend from high school, before you all got country about it.


My husband says you are irrational, and a lost cause--that I am stooping to your level by writing this at all. I do not agree. I think you deserve to be confronted. I think you deserve to know that you are, in fact, important enough to be a blip on my radar--because you are the stepmother of my siblings, even if you never call them on their birthdays. So, no, I will not sit in silence and think that you are trash. I will not objectify you. I will say to you, straight up, that you are worth standing up to. Even if I have to stoop to do it. I will even say: Sometimes, you are right. But mostly, you are sad. And that you may have bullied my mother, but you will not bully me--on Facebook or anywhere else. I'm Jessica fucking B-W, with a good reputation, accomplishments, success, IQ, a savings account, and a nice, middle class life. Who the fuck are you?


Sincerely,


Jessica F. B-W.

New News is Bad News

Choosing the right specialist is a little like choosing the right grad school. That is to say: it is vitally important to your success, and choosing the wrong one can negatively impact the course of your life. No pressure. Luckily, I already knew which specialist I wanted because he came with a modifier. When my other two doctors, some family members and a few friends talked to me about which GI guy to see, they said, "Well, there's Dr. D, he's the best." I started to think of him as Dr-D-He's-The-Best. I was told it would be six months before I got in to see him. My appointment was two weeks from the date of referral. I considered myself fortunate.

When I arrived, I was the youngest person there--by about 40 years. The age disparity highlights my sense that none of this is fair, my sense that I'm too young to spend THE REST OF MY LIFE sick. I begin to feel not-so-lucky. I sat silently and read my Denis Johnson stories, looked at my shoes, wrote some lines in my head about them both, and the old people, and the spots on the carpet...

My surgeon, who I am so very fond of, said to me, "GI docs are not as personable as you and I."

He was not wrong. But maybe not very many people are as personable as the two of us. We did, after all, discuss what I would call my disease inspired punk rock band: "Toxic Megacolon." Every time he mentioned a new horrible possible outcome, he added "And that should be the title of the first single," or, "You should make that the album title." During my last appointment with him, he told me I would probably be disembowled and that I might just lose my liver and my vision as well. I walked out of his office feeling awesome. He's the bedside manner master. Like I told my close friend Jack, I say we throw that man a parade.

Now, let me say: I like Dr. D. He's one of those superduper smart people I can admire--BUT I walked out of Dr. D's office feeling like shit. Mostly because of some miscommunication. You see, I was high on drugs the day of my diagnosis. I don't remember a damn thing about what the surgeon said. I only remember cursing, weeping inconsolably and telling the surgeon "MY BODY REALLY DOES HATE ME!" in between sobs. My husband, mother and grandmother all three had conflicting stories about what the diagnosis actually was. I understood it to be severe distal ulcerative colitis. I was wrong. After talking to me about symptoms, pushing on my belly, reading the surgeon's report, examining the biopsy report (which, btw, "could not rule out infectious agents" i.e.: was inconclusive) and looking at pictures of my horrendous little wound-friends, Dr. D said "Well, I am certainly convinced. Your pictures are like a textbook." He then proceeded to tell me that my entire colon is involved. All the way up to the cecum. I still have Ulcerative Colitis, but now it's severe pancolitis. Which is the very worst damned one to have. Lucky me.

He also said, "You don't need to start worrying about cancer for eight years." I thought: I'm 27. I'm 27. I'm 27. In eight years I'll be 35. I don't need to start worrying about colon cancer for 8 years?! Thanks for being so flippant about it, D. Then I remembered the waiting room, considered that maybe he thought he was talking to a 90 year old, and forgave him.

In other news: Apparently the specifically-for-my-disease drug is not currently at a therapeutic dose. All of the improvement I have seen is the result of that Devil, Prednisone. He upped the dose on my 5-ASA (Asacol)--which moved the price from $250/month to $362/month. I will only just be on the therapeutic dose at that level, and may have to bump up again.

So, yeah, when I left his office I felt like shit. He did make one ass joke: "This disease is the proverbial pain in the ass. But it's manageable." I am currently a big fan of ass jokes. But I need more than one a visit to balance out that much unpleasantness.

FURTHERMORE, surgeons AND specialists sure know how to push on organs. I feel like I've been stabbed again. I managed to keep my energy up and did the troop leader thing tonight, in a new dress I bought to console myself about the fact that I still hate my new Edgar Suit. I'm trying to buy myself one clothing item a week, until my birthday money runs out. It'll be at least two years before my skin is ready for a new tattoo anyway. Have I mentioned how very lucky I am?

Actually, it's a good thing I don't actually believe in Luck or Anything Else, or I'd have some real anger issues. I'm so glad my life sucked enough to purge me of belief before now. I don't think I could handle adding Existential Crisis to my list of Things To Overcome.

I may post the poem I wrote today. It's not ever going to be good enough to save for anything.

What She Ties in Apron Strings

I'm very close to my grandparents. In fact, I think they're the best people ever. They're loving, supportive, intelligent, unassuming, unpretentious, generous, thoughtful, thoroughly wonderful people. They're the kind of people who pay for stranger's groceries because they remember what it was like to be young and always worried. And the best part is, they don't subscribe to any religious credo that either requires or rewards their behavior. Their goodness is its own reward. Don't get me wrong, we have our occasional interpersonal conflicts...but I am proud of who they are. There isn't anything in the world I wouldn't do for them just because of who they are.


When I started to be sick enough to lose my appetite, my grandmother tried to take me to every restaurant she could think of in search of something I could eat. Mostly, I refused those restaurants or politely pushed my food around with my fork. My grandmother isn't the kind of person who doesn't notice that sort of thing. She's the kind of person who brings me new shoes when she comes over to give my spouse and children candy bars and ice cream. She's the kind of person who goes home the week of my diagnosis and experiments with my two favorite of her recipes until she has successfully lowered the fat content by more than half. [Don't worry, I'm posting the recipes below.]



My favorite part of having meals at my grandparent's house is the prep time: sitting at the kitchen table chopping or peeling, yelling over the food processor about politics we all agree on, watching the children chase each other around the dining room table, being shooed out of the kitchen 1200 times because, though we've all come to help, really we're just there for the company. I can remember the same processes running through my childhood and adolescence: chopping, yelling, chasing, shooing. Even when things were at their worst, there was always the comforting rhythm of my grandparents' kitchen. Of all the beautiful, wonderful things I wanted for my own daughters, this experience is maybe the most important to me.


My attempt to move from Ensure to real food calories was a terrible idea. A really, truly awful idea. Three days ago, before it was known to me the sort of pain this really, truly awful idea would inflict, I made plans with my grandma to go to the grocery store and come back to her house to cook (in surplus) the new recipes she developed. This morning I brought my can-do attitude, my daughters and the stabbing pain in my side to my grandparent's table, to help my grandma make food she didn't want help making. Food for my freezer, food for my disease. I wound up under a quilt in the back bedroom, crying in frustration on the phone to one of my very best friends.


When I came out, I found my mother and 7 yr old daughter sitting at the kitchen table, "helping," my grandad yelled about politics while my five year old pushed a Barbie car around the dining room and my grandma shooed me out of her way. What I saw today, tied in my grandma's apron strings, was more than love shown through decades of service, more than good meals and good arguments --it was our Tradition. It was our holy Rite. It was our whole history of working hard and loving each other, of fighting and making up and proving over and over again how strong we really are. I never needed to GIVE it to my daughters. It belonged to them before they were born.


I didn't cry in frustration anymore. I took my place at the kitchen table and gloried the comfort of those familiar rhythms: chopping, yelling, chasing, shooing. My grandmother's apron strings swayed to the music.




THE RECIPES:

GG's LOWFAT CHICKEN SALAD

Ingredients:

2 cans Swanson 98% Fat Free Chicken

1/4 Cup Craisins

1/4 of 1 finely minced Onion

2 Stalks Celery

5 Boiled Egg Whites (sliced)

3 Tablespoons Reduced Fat Mayo with Olive Oil


Directions:

1. Mix ingredients together. Seriously, that's it. This recipe makes 19 tablespoon-sized servings.

WAY DELISH LEAN[-EST] BEEF TIPS AND MUSHROOMS
Ingredients:

1 lb ("Diet Lean") 97% lean Stew Meat (you're going to cut off any fat you see, so cut out the hassle by looking it over)

1 onion

1/2 package of sliced mushrooms (we used Baby Bella)

1/3 cup Flour

Garlic Salt

Cumin

Season All

Water

Some Extra Virgin Olive Oil

***IMPORTANT NOTE ON OLIVE OIL***

[Cool research, read it. SAVE YOURSELVES!]

Other stuff you need:

A gallon sized storage bag

Lots of time

A big, nice skillet with a lid

Directions:

1. Turn your burner to low, coat the bottom of your pan with a thin layer of Extra Virgin Olive Oil. (We're talking a VERY THIN layer.)

2. Combine flour, garlic salt, Season All & cumin in your storage bag. (Measurements on dry ingredients are not precise, my grandmother decides how much by saying "Shake-Shake-Shake-Shake" while she fills the bag.)

3. Take stew meat out of package and wash it, then cut away any fatty parts you see. A little marbling is okay, but even the super lean has more fat than you (I) want.

4. Place meat in dry ingredient bag, shake until meat is dusted, but not coated too thickly. Throw the dry ingredients away. You don't need them any more.

5. Your oil should be hot by now. Place the meat in the pan, turn up the burner. Brown the meat.

6. Add in 1 chopped onion before meat is cooked through.

7. Add in sliced mushrooms. Pour water over the top. Cover. Turn burner to low.
8. Allow to cook down over and over, replacing lost moisture with water. (We're talking 3 hours on low on the stovetop.)

9. The sauce consistency should be gravy-ish. This is accomplished by the repeated cooking down of the ingredients, YOU ARE UNDER NO CIRCUMSTANCES ALLOWED TO ADD ADDITIONAL FLOUR. It ruins it. My grandmama was emphatic on this point.

10. Serve over plain white rice.


Today my grandma doubled the recipe, four people had a nice sized portion, 2 people had tiny portions and I wound up with this in my freezer:

[Each container is 3 tbsp. of white rice + 3 tbsp of beef tips and mushrooms, which is 2 servings for SickJes.]

"The only thing I'm afraid of is cheese."

How to Start a Blog Post Using the Phrase Replacement Game:

Every woman's most difficult and complicated relationship is with food....

Eating is one part catharsis, one part delight, one part nourishment of fat cells...

When you face something....let's just say, "famine" in your life...

So, I don't know if you guys have noticed or not, but I love Mexican food...

I'm beginning to feel hungry...

The day before yesterday, I consumed 1,000 calories without supplementing my diet with Ensure. It was really hard. Why? Have you ever had food poisoning from fettuccine alfredo? Now, since that incident, have you eaten that particular fettuccine alfredo again? That's because your body doesn't want food that tries to kill it.

One of the theories as to why my disease exists is that my immune system thinks food and the friendly bacteria I need to digest food are trying to kill me. My immune system goes all Hannibal of Carthage and hurls millions of white blood cells at the problem, who, being the dedicated-but-brainless brutes they are, then proceed to fling themselves Kamikaze style at the lining of my colon, causing it to become inflamed and develop millions of bleeding ulcers. I am lucky enough to have also developed arthritis, which is also an inappropriate response of my brainless, brutish, WBCs. I opened this elaborate mixed metaphor with the phrase "one of the theories," because, like most intelligent people, one of my methods of coping is intellectualization and I have delved into credible scholarly research on what's happened to my body which stands unmatched even by all the research I've done on Gender Theory. (Which, if I do say so myself, is pretty extensive for an undergrad.) Anyway, there is no consensus about what causes Ulcerative Colitis, and while all agree that it is a malfunction of the immune response, not all scholars even classify it as an "Autoimmune Disease." My doctors say it is an autoimmune disease, so I say what they say. Three weeks of reading does not make one a doctor.

I said all of that to say this:

Everything I eat causes some degree of pain. Sometimes, things I think I can eat still cause me to vomit. I don't understand this phenomenon, but I intend to ask my gastroenterologist about it as soon as I have one. It doesn't seem fair that food cause me distress even from the outset. The deepest part of this problem is that it doesn't matter how much I tell myself I have to eat to get well, I still have the guttural response of "get that poison away from me," every time I see food. It wasn't until a few days ago, when I saw my GP that I could put my finger on exactly what that feeling is called.

Doc: How is your appetite?

Me: Awful, but getting a little better. It's weird, I just have this feeling when I think about eating like.......it's hard to explain, but....it's like....I don't want to....?

Doc: Alright, well, I need some blood from you. If you'll follow me to the lab, Nick can stay here...unless you're afraid of needles?

Me: The only thing I'm afraid of is cheese.

............................................................

Then:

^Just like this, I realized what to call my aversion to food: FEAR. Not just any kind of fear, either: ABSOLUTE TERROR. The kind of absolute terror that kicks you in the pit of your stomach, grabs you by the throat, dangles you over the abyss of your own mortality and laughs at you as you struggle to free yourself from his black-gloved hand.

In that instant of "BOOOOOM! [JESSICA THIS IS YOUR LIFE!]" I also realized that because this fear is so primal, there would be no intellectualizing it away. As of right then, my strongest defense: sheer force of will, pure unadulterated unwillingness to admit defeat, Hubris on the scale of Michelangelo as he defaced his Pieta--was doing little to remedy the food problem. I would need to default to my other favorite coping mechanism: humor. But how? How do you make paralyzing fear funny? I had to think about it.

I decided to go with Hobbits.

I made myself a menu of things I can eat:
Breakfast: Banana
Second Breakfast: 1 Tablespoon of Peanut Butter
Elevenses: Dry Low-Fiber Cereal
Luncheon: Two Eggs
Tea: PB&J Fold Over on White Bread
Dinner: Baked Chicken Tenderloin, White Rice & (baconless) Green Beans
Supper: Yogurt, or Ensure if I still need calories.

It's so much easier to eat when I get to say "Elevenses" once a day.