Murakami on fate

“Sometimes fate is like a small sandstorm that keeps changing directions. You change direction but the sandstorm chases you. You turn again, but the storm adjusts. Over and over you play this out, like some ominous dance with death just before dawn. Why? Because this storm isn’t something that blew in from far away, something that has nothing to do with you. This storm is you. Something inside of you. So all you can do is give in to it, step right inside the storm, closing your eyes and plugging up your ears so the sand doesn’t get in, and walk through it, step by step. There’s no sun there, no moon, no direction, no sense of time. Just fine white sand swirling up into the sky like pulverized bones. That’s the kind of sandstorm you need to imagine.

An you really will have to make it through that violent, metaphysical, symbolic storm. No matter how metaphysical or symbolic it might be, make no mistake about it: it will cut through flesh like a thousand razor blades. People will bleed there, and you will bleed too. Hot, red blood. You’ll catch that blood in your hands, your own blood and the blood of others.

And once the storm is over you won’t remember how you made it through, how you managed to survive. You won’t even be sure, in fact, whether the storm is really over. But one thing is certain. When you come out of the storm you won’t be the same person who walked in. That’s what this storm’s all about.”

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On consciousness…

Psychologist William James says that consciousness is ‘Inert, uninfluential, a simple passenger in the voyage of life, it is allowed to remain on board, but not to touch the helm or handle the rigging.’

 

Onward!

Letting go fo this writing exercise – spiced it up a bit and and washing my hands of it. Enjoy kids!

 

It seems like such an easy choice: pink is soft, pink is feminine. Pink is safe, pink is appealing to both sexes in different ways. Pink is the color of bubblegum, of cotton candy, of babies, of breasts and nipples. In October, pink becomes the predominate color on an endless list of products, from tennis balls and cereal boxes to the gloves and socks of NFL players. If breast cancer has been a part of your life in any way, you feel secure in knowing that this color represents hope for a future cure and is an ever-lasting symbol of awareness.

I’ll show you diseases branded in shit.

September 2007 – Salt Lake City Airport

I stare across ten gleaming, empty stainless steel stalls in the airport restroom. The sacred, isolated pleasure of a toilet that is yours alone. Moments before, I was convinced that bathroom floors were petri dishes of every imaginable bacteria, but the cool tile against my cheek offers nothing but comfort. My breathing is tight and controlled  –  relaxing the muscles in my abdomen brings a wave of pain that keeps me on the ground. I bite at a sore in my mouth, and feel a rush of liquid course through my gut as I cramp, moan, and a slow gurgle brings brief euphoria.  I croak “help” to no one. The lone woman who enters the restroom to wash her hands comes and goes without noticing a single bare foot peeking out of Door #1.

It’s rumored that  Dan O’Bannon, the screenwriter for Alien, used his painful experiences with Crohn’s Disease as inspiration for the creature bursting out of an actor’s chest. I get it now.

Hours earlier, I’d left my apartment before sunrise to catch a plane from Phoenix to Salt Lake City. I was the newly-appointed Marketing Coordinator for a small non-profit, working alongside a good friend  from college. We were tasked to attend conferences across the United States, spreading our own unique brand of drug prevention among teachers and parents. Now all I wanted was a drug cocktail that would break a mother’s heart. Stop a heart.

___

Bodily functions are not sexy. They’re not fun. They’re rarely spoken about among polite company. And they are not pink. Few diseases are afforded the luxury of easy association with sexuality. Inflammatory Bowel Disorders (IBDs), so far removed from sexy, exist in their own world of shame.

I was diagnosed with Crohn’s Disease in 2007. Crohn’s, along with Ulcerative Colitis, are the two most severe IBDs, and both lack a cure. With Crohn’s, the immune system attacks the gastrointestinal tract, detecting food as enemy fighter, causing inflammation, ulcerations, and  other related symptoms.

The “related symptoms” of Crohn’s disease:

You have to poop. A lot. During a “flare-up” of the disease, you could go more than 20 times a day, and the trip to the bathroom is often accompanied by blood, mucus, hemorrhoids, and a smell that can only be described as something going rotten inside you. You poop your pants. Frequently. In public. You experience severe cramping, nausea, and vomiting. In severe cases, a portion of the colon is removed, leaving many with a pouch attached to the outside of their abdomen, where waste is collected and disposed of. If the case is severe enough and uncontrolled with medication, you will die.

Scoped

It’s not every day that a bearded stranger tells you that he’s going to knock you out and shove two feet of plastic up your ass. But that’s what Dr. Berstein tells me, like some terror from a Bosch painting. It’s been a week since Salt Lake City, where I picked myself up off the bathroom floor, took a puddle-jumper to Montana to finish my business, but ended up in a hospital in Helena instead. I’m back in Arizona – puzzled and embarrassed.

In addition to my gut, the disease yet-to-be-named has made my lips enormous but incredibly dry – I look like Angelina Jolie after a ski trip. Sores coat my mouth, and sharp pain makes it nearly impossible to swallow. Little do I know that I’ve also developed an exceedingly rare form of Crohn’s in my esophagus, causing one of the leading Gastroenterologists in the world to seek me out as a gassy guinea pig.

I’d never paid mind to endoscopies or colonoscopies. They were procedures vague in nature, meant for the old and sick. Some might say they’re simple and quick – critical to diagnosis and safe to administer. Most who say this haven’t woken up in the middle of one.

The most vivid moment pre-procedure came when the nurse told me to put on my gown, making sure it was open in the back for easy access. The most vivid post-procedure moment is being wiped down by enormous, heated aloe wipes, like a hospice resident. At least with surgery you might get a cool scar. I’d just aged 50 years.

I collect my memory while the doctor is mid-sentence. It took just moments for him to suggest a diagnosis, though biopsies will seal the deal. Most of what he says sounds like an adult in a Peanuts cartoon, but I do hear this – it is something life-long. A forever companion in digestive Hell. If I were a Cathy comic, I’d compare it to a shitty boyfriend.

___

Telling friends and acquaintances about my disease yields mixed results. Most have heard of Crohn’s and have a vague understanding of the symptoms. Others have a relative who has been diagnosed. These types are manageable. They get it. What’s unbearable are those who equate Crohn’s with an upset tummy, and offer up a bevy of whiz-bang hippie cure-alls like acupuncture, Chinese herbs, meditation, and more fiber (the latter being the most offensive). The disease presents itself in the restroom –so to discuss it is to venture into the taboo. It’s like asking someone about their salary or sexual fetishes. These things are kept close to the chest.

So what is to be done with diseases that are unspeakable, that do not immediately kill you, but that significantly degrade quality of life?

Successful branding of a disease necessitates marketing tactics that run counter to the do-gooder repertoire. Sex appeal. Wide and willing audience. Non-threatening. What is more nourishing than the breast? What evokes  more tenderness, what stirs a universal call to action? What is more repellant than the colon? Crohn’s is a tough sell. It’s the small business owner with 2000 dollars, a wish, and a three-month contract with a marketing firm.

I used to think disease awareness was a joke. Cancer kills. Heart Disease kills. Strokes kill. How are these facts escaped – not learned? Once a disease is stuck in the craw of the collective psyche, how long would it take to dislodge?  What I came to realize through the meditative state that only comes with  a long stay in the bathroom is that these ailments have hundreds of years on Crohn’s. IBD’s are like annoying baby sisters – begging for attention, but rarely taken seriously. Crohn’s has only had a name since 1932 –it’s time to give it a personality.

I’ve thought a lot about what can make IBD’s easy for the public to digest. The stories I’d like to tell are comi-tragic. Swallowed because they’re easily relatable. Like a college gross-out movie or playground whisper, I want the public to giggle at misfortune, then recognize themselves in it. We won’t all develop tumors. But we all have a gut. We eat, digest, repeat. As the children’s book claims “Everybody Poops.” So let’s have a moment of silence for those who have a harder time doing it. And let that silence be broken by a perfectly-timed fart.

Here is what I propose – a sign in Times Square, 30 feet high. Looming above the public is an enormous porcelain God. Within it, the words “IBD’s Are Shitty.”  Cue informative website and photo credit.