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.

Ode to the Informal & Rocks of Remembrance

I am beginning to feel better. My joints are almost normal sized, my abdominal pain is now only intermittent. Fatigue, dizziness and general malaise are still kicking my ass. I'm still suffering with my Prednisone speedbrain. I had to see my doctor today because of a sudden mysterious fever. But, really, it's amazing how much better I feel than last week. I even ventured far afield today, to the grocery store, with my husband. It was slow going and I felt like I had run a marathon afterward, but I also experienced a tremendous feeling of accomplishment. I mean, I got dressed. I went somewhere. I bought my own peanut butter this time.

There were other events:

My Husband: I don't think I know what "country" means.

Me: Yew mean ya ain't never known nobody who's just country?

My Husband: I don't get how screaming at people in the grocery store is "country." I'm sure some of the good people of New York City also scream in grocery stores.

Me: Oh, honey....screaming in the grocery store is country no matter where you're from. Okay, okay, I forget you folks from Southside aren't really ej-aw-cated on some things...let me translate. Country: [adj.] expressive of crude or unrefined manners, descriptive of inability to assimilate into public society due to lack of concern toward holding oneself accountable to social standards of public behavior, specifically with reference to making a public spectacle of oneself due to an unfamiliarity with the protocols of urbanity. See also: "country cousin" or "country bumpkin."

My Husband: I don't get why "country" is the word for that.

Me: You see this? This is my English major trump card for that definition I just made up. I hereby declare myself correct.
============================================
This conversation, one I shared with my husband as we left the grocery store, where we went for peanut butter and bananas and left with peanut butter, bananas and front row viewing of a countrified screaming match, led me to some reflection on dichotomy. Now, I appreciate words. If I could fill up a bathtub with words like "re-appropriation" or "hegemonic" or "ignominious" or even "antidisestablishmentarianism," I would take baths three times a day. I'll take my sentences any way I can get them: short and sweet or long and formal. But most days, I'll dine on Vonnegut and consider Melville my dessert.

Having said that, Imma be real honest and tell y'all somethin': there are few things more precious to me than informality. Sentence fragments are my favorite fragments. Colloquialisms might as well be the language of angels. I love the ability blogging affords me to just write like we're talking in my living room. I used to feel the need to be "ON" all the time. Like, people were going to think less of me if I used a comma splice. Then one day I realized I knew more of the trailer park than cotillion. I would be a snarky, pretentious, overwhelmingly disingenuous douchebag if I only ever spoke or wrote in complete sentences. It would be paramount to the abandonment my native tongue. I don't care if some high school English teacher taught me that my accent, in context, is a social liability. Lightning Hopkins and Sookie Stackhouse are more credible sources. So, I'm not going to edit this blog for lousy almost sentences. I love lousy almost sentences.

I should be writing papers instead of blog posts. Unfortunately, the speedbrain makes that scenario nearly impossible. So instead, I've got notes from which to build sentences. Speedbrain notes are Brilliant. Capital B. Speedbrain sentences are...more trouble than they're worth. [Once again, I'd like to thank Prednisone and my immune system for continuing to complicate the previously uncomplicated, mundane processes of my daily life.]

In other news, as soon as my weight has plateaued, I'm getting a new tattoo with my birthday money. I already have one tattoo. On my right wrist DON'T PANIC is printed in large, friendly letters. There are two other patches of skin marked by that sentiment, in that font. One on a foot and one on a forearm of my two oldest dearest friends. Every time I see it I hear us echoing that sentiment to each other; the sentiment which stretches across a decade of alterations to our lives, the thing we've said to each other millions of times, no matter what words we were using, the sentiment Douglas Adams gave us as a guide and Arthur C. Clarke declared the best advice given: DON'T PANIC. I could not say all the Things it means...

My new tattoo is going to look something like this: This is AURYN. It's a symbol from The Neverending Story, which, is, in and of itself, pretty boss. I watched that movie probably once a day for ten years when I was a child. But, that's not why I chose it. It means Things to me. Today, while I was reflecting on the Things that it means, I realized that tattoos are like poems: if they can be explained or, if the explanation can really adequately describe the meaning--if they have to be validated by others, then they never meant any Thing to start with.

"A work of art is good if it has grown out of necessity." --Rainer Maria Rilke

Life in my New Edgar Suit (this one goes out to the ladies)

So, I don't know if you guys have noticed or not, but I'm fat. Don't you sputter at me, Missy. And, keep your embarassed guffawing inside your mouth, please. My BMI is in the obese range. That means I'm fat.

Now....can I let you in on a deep, dark secret? I don't hate my body. It's covered in soft skin. It bears battle scars I got from building and feeding my daughters. It houses a huge mind, and stockpiles of resolve and gumption. Besides, I'd vastly prefer Botticelli's Venus to Kate Moss as the standard of feminine beauty. To each her own, I say. Now, I'm no Venus, but--I'd prefer the soft curve of goddesshood to hard pitch of cocaine if I got to pick. I say we women should come to the table and vote on our own role models. Oh, you think Kate Moss would still win? Yeah, you're probably right.

There was a time when I was even fatter than usual (thanks, desk job). When I reached the fatter-than-usual stage, I had no energy and generally felt like a huge, heaping pile of simple carbohydrates all the time. But, even then I could heave myself up two flights of stairs without getting winded. It took me 3 months to gain my "bank weight" and under 6 months to lose it. I went back to being normal-fat, and I was really, most days, okay with that. Though I did find that something had shifted in my perception of my own fatness when I had to listen to beautiful, brilliant women repeat every single day that they were disgusting. I began to think, "Well, my conventionally attractive sister, if you're disgusting, what am I?" For awhile, this inherited sense of self loathing gave me increased anxiety about meeting new people. I wound up with a gym membership, a subscription to a tanning salon and a calorie tracker on my phone. But, guess what happened when I got back to normal-fat? I got over all that awfulness really quickly. Hey! I'm Jessica frakking Weisenberg. I get over stuff.

[Later, I began to wonder if the root of gym memberships, crash dieting and tanning beds is really about matching the outer self to the outer selves of others, or if it's just some women's way of coping with the manner in which she is undervalued in her professional and personal life...anyway, gender studies aside...]

Why oh why would an obese twentysomething be unhappy with over 20 pounds of rapid weight loss? You think I'm going to tell you why, right? Well, of course I am...

First of all, out of the initial 18 pounds I lost, at least 8 of those were from my chest. Talk about your self-esteem crusher. I mean, I know they weren't perfect, but they've been right up under my chin since I was 13... and, not to be gross to you non-nature goddess types, but these are the organs which provided sustenance to my daughters for their first years of life. They're a part of who I am, part of the roadmap of my life. I never realized how attached I'd gotten. Granted, they're just significantly smaller than usual, it's not like they're really lost...that I can't even fathom.....I've once again got renewed awe for women who lose their breasts to cancer. Those women, if you know any, are the bravest, most amazing women in the world and deserve to be told so RIGHT NOW, so stop reading this and go forth into the world to hug your local breast cancer survivor. I'm going to hug my own stepmom double hard next time I see her. I only hope I don't bawl like a newborn calf when I do it.

Another obvious reflection of my troublesome rapid weight loss is that it looks like my disease took huge bites out of my body fat. What once was pale, smooth-ish flesh is now lumpy, bumpy skin. Even before the weight loss, my abdomen held the worst stretch marks I've ever seen on anyone. That's what happens when you give birth to two 9+ pound babies in under 2 years. Even if you use body butter every single day, sometimes you get stretch marks. I count them as badges of honor. Yes, they're gross, but they're mine. I worked hard for them. I have always reflected on them as markers of who I am: a mother. Well, now I've got another set of stretch marks. The kind you get from shrinking all over your body. And those white stripes of motherhood that I wore with honor? They look 10million times worse. I have found the remarkable difference between losing weight the right way and losing weight the wrong way: when weight is lost through diet and exercise, one tends to look stronger, more robust. When weight is lost too rapidly, things begin to rather quickly look very sad.

In the classic movie, Men In Black, (and yes, I mean classic, I'll arm wrestle whichever dude wants to argue as soon as I have muscle again) a space invader crash lands on a farm and proceeds to peel the farmer. He wears the skin of a misogynistic redneck asshole to hide his insectform for the remainder of the movie. The downtrodden, vapid wife of the farmer (think American Gothic, or The Miller's Wife) calls it his "Edgar suit." Well, that's how I feel about my body right now. I feel like my disease is wearing my skin. I still look and sound like myself for the most part, but really, the dominant presence inside the stretched decay of my flesh is a roach that ate me. Granted, that roach is my own immune system.

With each day, my complexion improves, and with it, the feeling of zombie-ness decreases proportionately. So thanks, Modern Medicine, for at least giving me my face back. It might not be a stunningly beautiful face, but it's an unusual face, maybe even a pleasant face, and I'd like to keep it while it's still mine.

Having said alllll that, I should add:
Because I feel so bad, I've been wearing jeans and t-shirts every day. It's harder to tell, in jeans and t-shirts, how much things have changed--even if the jeans are a smaller size. Yesterday, I put on my favorite dress, which I can almost still wear because it's a wrap. (I had to have my seamstress grandma pin up a few areas.) Looking at myself in the mirror, in that dress, I had a moment of "WOWZA!"
And that, even if I know underneath the dress is pock-marked skin with intermittent pockets of missing flesh, even if I still don't feel quite like it's my own body I'm in, felt just a little bit awesome.

On Whether or Not Prednisone is the Devil

At about 2 AM on Thursday morning, as I lay underneath my trusty old heating pad, with my new elephant sized ankles propped up on the end of my couch, moving my legs slightly to avoid the discomfort of either moving or sitting still, with my mind running 12 million miles an hour and sweat covering my skin, it occured to me that the many and varied tribes of internet sickpeople might have something useful to say about coping with the side effects of Prednisone. "Google?" I said, in my head, and with my hands to my laptop, "Prednisone is..." Google suggested, "Prednisone is making me crazy?" And I replied, out loud, "YES!" The cat startled from his place near me. I felt more crazy.



About fifteen minutes later, I googled "Prednisone is the devil" and received over 4 million results. I agreed, at the time. Prednisone may, in fact, be the devil. Why, you ask? Well, faithful reader, I will tell you why:



PREDNISONE IS THE DEVIL BECAUSE:

1. "HOLY SPEEDBRAIN, BATMAN!"

Now, admittedly, I've got some fairly rapid brainwaves. I am even prone to occasional bouts of "randamity." I can make hasty, enormous cognitive leaps--part of that is because I'm really smart (what? I am...) and part of that is because I think really fast. [Let's not confuse the two.] I am likely, on a fairly normal day, to jump from subject to subject with the precision and speed of a lemur. If we were playing a word association game and you offered "banana pudding," I would be able to connect that, in 11 steps or less and in under .05 seconds to the masculine/feminine binary in Middlemarch. [This is why I'm not very good at telling stories.] Now, my normally rapid processes are NOTHING compared to what someone with Bipolar Disorder or Adult ADD faces. Ohhh no. Far be it from me to try and empathize with diseases I don't have :). I'm just a little random at times, and more than a little Type A. On Prednisone, however, these brain mechanics of mine are amplifed to the GAZILLIONTH degree. Example: I had an assignment to write a little three or four page paper on a Keats' poem, "On First Looking into Chapman's Homer." The paper required no outside sources, was to be a short length, on an easily decipherable sonnet. Piece of cake, right? It's just New Criticism. I can write that paper in an hour and in my sleep. Problems began to occur when I couldn't focus and had to just step away from the paper 20 times in 2 days. My beautiful, logical thoughts were in disarray. My sentences were circular. My hands were shaking. The paper took me a little over five hours to complete. It was only 5 pages long. That's right, after I had already had fully realized ideas, I spent an hour per page trying to make them coherent. I also wound up quoting: Percy Shelley, George Eliot, & Rainer Maria Rilke; and referencing paintings by Vermeer and Jan Matejko. Don't get me wrong, it's a damn good paper. Maybe the best of this semester. I just wasn't able to....simplify, the way I usually can. It all came out a tangled frantic mess of every brilliant idea I had. It was, in some very real ways, a disaster.



2. "LEAVE MAMA ALONE, GIRLS!!"

Irritability, another speedbrain problem, gets its own bullet point for being especially...irritating. I feel like I'm always on the verge of a full blown panic attack. Luckily, I still don't have enough energy to be really, truly mean. I did scream at my five year old for hopping around this morning. My five year old always hops around. It's a special facet of her sunshine-laden personality--which is the reason I felt so absolutely horrified when she put her face in her hands and cried like I'd killed a bunny in front of her. I apologized. Just like I apologized when I screamed at my 7 year old for needing help with her shoes. She's not a crier. She did look like she wanted to punch me in the face. I deserved it. I can't count how many times I've apologized for yelling at my wonderful, helpful husband today. Even though I know this keeps happening and I'm trying to be careful with my family's feelings, I just can't keep a handle on it. And ohhh lordy, is there anything I hate worse than loss of control? No, no there's not.



4. "INSOMNIA!"

I watched Food Network until 3 this morning. I stared at my bedroom ceiling until 4 AM. I got up from the bed at 8 AM. Rinse. Wash. Repeat. X 3 Days.



5. "MY HEART! MY HEART!"

Heart palpitations: they're awful.



6. "MENOPAUSE?"

WHY IS IT SO HOT IN HERE? Oh yeah, it's also on that sheet from the pharmacy.



7. "I HAVE ENERGY! OH WAIT...NO I STILL FEEL AWFUL."

The absolute worst part of the Prednisone experience, from my point of view, is the false sense of energy it gives me. If I am sitting down and all my aching joints are at rest, I begin to feel like I could run a marathon. Of course, my joints hurt all the time and I'm still neither eating nor properly absorbing nutrients. And now, I'm not sleeping either. The result of this special combination of circumstances is that, in a resting position, I feel like there's something I should be doing. And when I try to do something? BLAMMO! I get knocked right back on my ass by pain and fatigue. A fifteen minute trip to Walmart is almost too much to bear, even if I do the 6 to 8 hour fast it requires just to make it out of the house. I find this phenomenon particularly hard to articulate because it seems to contradict itself. It's just a tiny bit like this: have you ever stayed awake for 24 hours and then drunk three pots of coffee to make it through the day? Jitters, with a side of fatigue and nausea, right? Yeah, that's a little bit like what I mean.



SYMPTOMS OTHER PEOPLE EXPERIENCE:

8. HUNGER!

I am not afflicted with this side effect, because, remember that "every bite I take is a sacrificial gesture made on behalf of my daughters" thing, from a few posts ago? Yeah. That.



Some people, though, gain like 50 to 70 pounds on this drug. Combined with the speedbrain symptoms...well, geez I feel really sorry for those folks.



9. MOONFACE!

Sometimes Prednisone makes people's faces swell to moon sized proportions. They call it moonface. No, I'm not kidding.



10. INFECTIONS!

It says on the side of the bottle to avoid people who are sick. I live with a first year teacher and two elementary school students. Let's keep our fingers crossed that I can avoid this one.



WHY PREDNISONE MAY NOT BE THE DEVIL IN A LITTLE OVER 2,OOO WORDS:

Both of these pictures were taken at similar times, in similar light. No editing was done to either picture. I'm wearing only a tiny bit of mascara in both pictures. How does a woman who is sleeping LESS and eating just the same amount go from looking grayish, monotoned and sunken eyed to looking like a paler version her usual self in just 6 days? It's a Prednisone miracle! Actually, it's because the inflammation in the lining of my intestine is slowly beginning to abate. Unfortunately, I have suffered a natural decrease in hormones these past few days which have made my joint pain and GI symptoms worse (something else to look forward to), but by golley I look human again! I look forward to the time when I feel as better as I look. My GP says that will be in 3 weeks for the joints, and some time later for the other stuff.

SO, is Prednisone the devil or not?

I've decided Prednisone, like my own immune system, is both the devil and not the devil.

By the way,

Coming Soon to a Writer's Notebook Near You:

Poetical Ponderings on the Metaphysical Implications of Living in a Body That is Trying to Kill You, featuring ruminations on: self-loathing, destructive power, & hubris at the cellular level.

What Not to Say

When you face something...let's just say, "heavy" in your life, the worst thing for you is the additional pressure of dealing with the sweeping insensitivity and ignorance of other people. This is a precarious situation, because probably the best thing for you is to talk about your issue. I, for example, take the direct approach in dealing with my affairs. Granted, I had already lost 15 pounds and missed lots of school before I mentioned that I was sick to anyone outside of my immediate family. So, maybe I should say: "I take the direct approach when the indirect approach fails to provide adequate explanation for obvious cause-effect relationships." Point is: there's not a lick of sense in trying to hide a disease you can't hide--but, when you coax that devil out into the light and other people begin to see it, you expose yourself too.


What you need to read BEFORE you read the lists:
I have an uncommonly AMAZING support system. I am grateful every day for every kindness shown to me. These lists, I hope, do not reflect any kind of ungratefulness or bitterness. Also, be aware that I'm blessed with a certain mental fortitude and sense of determination that not everyone possesses. I can handle anything you say to me, really. If I love you, I'll call you out on it. If I like you, I'll find a way to shut you up. If I don't like you...well that's a non-issue because I don't associate with people I don't like. I've got...what did they call it at the bank? Huge balls. So, while you're in danger of hurting my feelings, you'd probably never know if you did, and I promise, I bounce back really quickly. I hope what follows is funny, and that it helps everyone with the huge learning curve any chronic diagnosis imposes.


WE, THE DISEASED, SHOULD:
1. Realize most folks mean well. Just like I have my very own personal dealing-with-shit style, everyone else in my life does too. They have a right to their coping mechanisms, just like I do.
2. Take everything with a grain of salt. The people we know who think they have vast medical knowledge because of their access to Google? Yeah, they're not doctors. Wikipedia doesn't know more than your doctor. Unless your doctor is a moron. Neither of mine are.
3. Not think people can or should understand how we feel. Even if they were doctors, they still wouldn't have the transactional experience you have with your own body. Any doc worth his fee will be the first to admit this.
4. Not be mean. Even when we really, really want to.
5. Politely change the subject if someone hits a sore spot.
6. Not take everything personally. For example: if you are significantly overweight (ahem) and your illness causes you to suffer rapid weight loss, when people make jokes about wanting your illness (and oh, they will), don't punch them in the throat. Laugh at them. Laugh long and hard. Because obviously, they're completely insane. However, if similar people mention that they bet you're happy about the weight loss, do punch them in the throat. They deserve it. You can laugh afterward.

THOSE WHO KNOW SOMEONE WHO IS ILL SHOULD:
1. Understand that any and all well wishes are welcome. Your honest concern can make a lot of difference in the quality of a day.
2. Think before you speak. When your loved one feels awful all the time, ESPECIALLY if they have any kind of chronic pain, they’re sensitive to things they ordinarily wouldn't pay any mind to. The ordinary, simple things may rub them raw. (In my case, literally. HA!) You shouldn’t be held accountable for every tiny stupid thing you say. I hope to never be held accountable for every stupid thing I say. Just...try to be forgiving if your loved one occasionally bites your head off.
3. Understand that if you do know someone with a similar disease, most sick people want to hear what happened to them. Unless they died. In which case, just don't mention it. Speaking from personal experience, I never felt better about my ability to cope with my own situation than when my friend told me that his friend, who has the same disease, is a similar age, and has already faced complications I can barely imagine, is "the same guy...but he can't eat some foods and is physically weaker than before." I can't adequately describe how comforting I found that sentence.



Alright, now that the basics are out of the way, let's move on to the big guys. These are some conversational tidbits in which I cannot conceive of any level of appropriateness under any circumstance. You may not be aware of how these things sound, but trust me, they make you look like a jackass. You don't want to look like a jackass, right? I didn't think so.

THINGS NO ONE SHOULD EVER SAY:

1. YOU SHOULD NEVER EVER TELL A SICK PERSON HOW TO FEEL. For example, "Cheer up!" or "You’ll be fine." When a person is told that his or her life will never be the same again, they have every right to be devastated, even to enter a period of mourning. Sure, it helps to stay positive. There's nothing wrong with saying "It helps to stay positive." But try to think of it this way: it took that adult you know who has been recently diagnosed with Disease X, 20+ years to adjust to the life they knew before the disease. They should not be expected to adjust to their new normal in just one or two hours, days, or weeks. They're allowed to be upset. You'd be upset too. Having said that, if you know someone who is struggling with a chronic illness and feel this person may be depressed, encourage them to get help. Tell them there is no shame in how they feel, tell them you're worried, be careful to purge yourself of self-righteousness before you do it.

2. YOU SHOULD NEVER EVER SAY YOU UNDERSTAND. You can't understand. It's a stupid thing to say. Diseases, and the physical and emotional pain they manifest, are different for everyone--because every single person has a different brain. There is a difference between sympathizing with individual symptoms and attempting to empathize with a disease you don't have. (If this difference eludes you, click the links for definitions.) The first is fine, the second is always entirely unacceptable. A particularly frustrating facet of this type of conversation is when drastic, ridiculous comparisons are made between two obviously incongruous scenarios. Do not EVER make drastic, ridiculous comparisons. Examples: I would never tell someone who had cancer that I understand their residual joint pain from chemotherapy. Why? Because, while for the past few days my own joint pain has been debilitating, the truth is, my joints have only hurt for a few weeks and probably won't hurt anymore once my primary disease is under control. My increased likelihood of losing my colon is nothing like a double mastectomy. See the difference? Your food poisoning is nothing like my UC. I don't care if you were in the hospital. Unless you were told you'd have that same food poisoning for the remaining 50 years of your life, I really don't want to hear about it.

3. DON'T COMPARE OLD PEOPLE TO YOUNG PEOPLE. Sick people feel old enough as it is. Telling someone that they have the same symptoms as an 80 year old inspires the opposite of hope.



In other news: I've lost another three pounds since last week's weigh in. Project Iniative: Slow Down Rapid Weight Loss=System Failure....rebooting....

The Bitter Pill & Bitter Pills

Blogging is one part catharsis, one part exhibitionism, one part nourishment of ego. I would argue that no one ever wrote a poem for different reasons. I would say that not only my own poems, but the poems of every poet in the history of words existed in their respective little microcosmic embryonic stages in that same combination of feeling and its lack: catharsis/exhibitionism/ego. Again, I can name my logical fallacy. Again, I dare you to prove me wrong.

Now we're going to have some cussing. Stop reading now if you don't like cussing. Granted, it's the most appropriate cussing you've ever read in your life. In all the grand history of cussing, this is the prototype for its appropriate application in the English language.

When the surgeon told me yesterday that I had Ulcerative Colitis, if it hadn't been for the anesthesia, I probably would not have said, in front of my grandmother, "Well, fuck." The other thing that would not have happened is that I would not have then proceeded to publicly sob for a solid twenty minutes. Public exhibitions of real life emotion are, after all, "not really [my] thing."

I have proof:

Last Thursday, March 10, I had my consultation with the surgeon who was to do my "diagnostic procedure." I went alone because I'm not one of those people who can't do things alone. After we discussed my symptoms, he did a quick physical exam. He continued to ask me questions while he looked me over. Right when he got to the pulse taking portion of the program, he asked me about my appetite. My pulse quickened, my voice cracked, my eyes welled...you get the idea. If I were being honest, I would have told him that food is the worst thing in the world. That food is evil. That I blame food for ruining my life. That I would rather sink my teeth into the slow melt of famine than ever have to eat again. That every bite I take is a sacrificial gesture made on behalf of my daughters. But I am not always honest. So I made a lame self-deprecating joke about how sad it was that I can't eat food anymore, because I love it so much. He laughed, sat down, and looked me in the eye. He asked if I was ok. I said no. The rest of our conversation was composed of talk about cancer, inflammation and infection. He told me the most likely culprit was UC. He told me people who have this disease are usually not ever fully free from symptoms. He told me that if I had this disease, I would die with one fewer major organ than I was born with. I swallowed hard, paid my bill, and walked out to my car where I sat and cried so hard I couldn't see. Then I drove to my grandmother's house and cried on her kitchen table. Because there are no strangers at my grandmother's house. My grandmother's house is not public.

Flash forward: back to yesterday, March 14, the eve of my 27th birthday, 2 AM: I decided on a themed birthday party for myself. If I did have cancer, I wanted a banner that said, "SOMEDAY YOU MAY BE ABLE TO EAT ICE CREAM AGAIN!" If I had Ulcerative Colitis, I wanted a banner that said "YOU DON'T HAVE CANCER!" Of course, I don't have the energy to participate in festivities. But, it was a nice idea. It helped me focus on the positive. It gave me a slogan no matter the outcome. When, if you google your symptoms, the vast universe of medical websites replies with a resounding, "Seek emergency medical attention," you can bet your sweet ass the diagnosis probably isn't going to be a bucket of roses. At least I could find a single comforting remark to make to myself in either scenario.

Approximately 7 and one half hours later, at 9:30, as I was being wheeled back into my room, and the doctor that I liked very much was telling my family that my new chronic disease was extensive and I'd most likely lose my colon in the next 15 years, I was high on drugs. Mostly Versed. Hence the fuck word. Hence the bawling. None of that should be surprising, considering the circumstances. It's how it all happened that surprised me. I said, "Well, fuck." Like I was commenting on a nasty storm cloud when I had planned to fly a kite. This made everyone chuckle. Then, when I suddenly proceeded to bawl, everyone else cried too. The surgeon had to leave the room to compose himself. Somehow this combination of laughing and crying still strikes me as very funny. There I am, in my hospital gown and new lighter body, pocked with new battle scars, bleeding from new wounds, with my black sunken eye sockets and my dull gray skin: Sick Jes, whose body hates her, about to turn 27 years old--bawling like a two year old in public, managing to suck five full grown people into her utter despair and sense of desolation. No one else seems to get the joke. It was like writing a poem: Catharsis/Exhibitionism/Ego. And in the end, no one can really get what it means. Even if they think they do. Even if they wrote it or found it written in their flesh.

So, now, I'm shooting for remission. The surgeon doesn't like that word because it implies complete freedom from symptoms. I understand I may not have that. I understand that the cure for my disease is removal of my colon. I understand that I have to take my medicine every single day, even though it costs nearly as much per month as the mortgage on our first house. And you know what? I'm really glad I'm not dying right now. Damn pleased, really. I am not devastated by this news. Worst case scenario, I lose my colon. Guess what? I can still watch my daughters grow up. I might not be quite my rotund, robust self, but I can exist in smaller portions. I have not cried since the drugs wore off.

I would like to get passed feeling like a wrung out, run through VooDoo doll. So I need to:
1. Try and get my calorie intake up above 750/day. [I feel like that will never happen. I try.]
2. Cross all my fingers and toes in hope that the steriod will quickly remedy my horrendous joint pain.
3. Find a hypo-allergenic moisturizer for my other new chronic condition, Rosacea. Because let me tell you, nothing looks worse on a zombie face than rosy red cheeks.

Here's to 27, and the hope that 2011 doesn't find other weapons in its search for ways to kill me.

What Else I've Lost

I've been sick for two months.

{begin rant} If I had health insurance, I would know what to call The Disease. But I don't have health insurance because my husband is an elementary school teacher and I am a college student.{end rant]

It turns out being sick for a long time can turn any daydreamer into a scientist. I can't go to school, so instead I just stay home and catalogue data. That's what scientists do, right? Catalogue data? That's what I think scientists do. (I'm still a little bitter at SCIENCE for dropping my ACT score. I mean, really. What an ass.)

My days become lists of questions. Questions become my life:
Did I drink enough Gatorade today?
How is my complexion?
Did I take any breaks from the heating pad?
Have I eaten?
Am I well enough to pick up the kids?
What's my weight?

No. Pale. No. No. Yes. Up point five pounds...these words compose my new monosyllabic existence. And that complex inner life, where I have visions of least plausible solutions at least six times before breakfast? Death by fatigue.

The J. Dub who has opinions about politics? Buried in malaise.

Passion? Ambition? Devotion? Activity? They drown in seas of that greatest monosyllable: Pain.

I've lost 18 pounds since the end of January. [Actually, SEVENTEEN POINT FIVE POUNDS, thankyouverymuch.] It's not like I didn't need to lose weight. I needed to lose about 50 pounds, actually. If I had given a damn about those 50 pounds, I'd be a size 8 again. But I don't give a damn. Not really. Sure, I have insecure days (thanks for that, bank girls), but mostly I'm happy to be young and energetic and absent the inconvenience of unwanted male attention. Yes, yes, I know now it wasn't a necessary choice, but when I was seventeen and riding in a car with a boy I liked who articulated the mind body split better than any feminist could--I chose brains over beauty. [So somewhere in the world, nine years ago, Phyllis Schlafly felt a happy tingle at the base of her spine because another burgeoning Feminist left the good men to the proper young ladies.]

Today I decided I wanted a bacon cheeseburger, because my appetite has begun to return, and damn it, everything I eat hurts like hell anyway...so why not do it right? I got out from under my heating pad and took a shower, found clothes that almost fit, and got in my car. BACON CHEESEBURGER became my mantra while performing these tasks. But as I sat there in the car, catching my breath and imagining my lips around that delicious hunk of burning fat, I became immediately nauseated. I thought, The Nausea is not inside me: I feel it out there in the wall...then I cried. Then I drove to the automatic carwash, got pissed off again and cried some more. Then my grandma called and I drove to her house. I ate half a dry belgian waffle without throwing it up. I felt almost okay for an hour. I listened to my grandparents use the word "Teabagger" and wondered for the billionth time if they knew what it meant.

When it was time to leave, my grandmother left the room to retrieve something she'd gotten for my husband. My grandad stood in front of me and said, "You know what would help you? You need to feel better about who you are and what you do."

"Normally, I feel great about who I am and what I do. It's hard when you can't do anything."

"Well...listen...." he looks at his feet, "I know, because that lady in there tells me, that how I feel doesn't always come across--but I want you to know that I couldn't be more happy about who you are and what you do. I'm proud of you, kid. You're my favorite."

I laughed, hugged him, and said, "Oh Dondy, you shouldn't say that. Everyone knows J. Bologna is your favorite."

Perhaps neither one of us is the sensitive type. We've got more practice at sarcasm.

As I drove home and let that conversation seep into my skull, I realized how much I've lost in addition to that 17.5 pounds. So much of who I am is what I do: get perfect grades, raise perfect kids, maintain beautiful relationships, volunteer, give, acheive. Do. Now that I'm not able to do, I find it hard to be. This is a metaphysical manifestation of prolonged sickness that I could not have imagined. I cannot be: Independent. Proud. Stubborn. And those adjectives weigh more than 18 pounds. I feel their loss. I feel like I really am wasting away.

I became Who I Am when I could answer The Question my least favorite ex-boyfriend, Pasta Strainer, was obsessed with: "What the hell are you supposed to be?" It stuck with me. It became part of my internal discourse. After digesting it for years, I found my answer was, "I'm Jessica Weisenberg, who the cuss are you?" That answer changed my life. But now that I'm not exactly Jessica Weisenberg, now that I'm Jessica On The Couch With The Heating Pad, how do I answer The Question?

I don't.

I catalogue in monosyllables. I wish I could sleep. I crank that heating pad up a notch. And I have the people who love me to remind me that sometimes, it doesn't matter who I am or what I do. Sometimes it's enough to remember that someone in the world believes there's nothing I can't do.

So, I've decided to stop crying in anger and start kicking The Disease in the ass. I'm Jessica freaking Weisenberg, Disease. Who the frak are you?