Tuesday, July 27, 2010

The Journey of A Thousand Miles

The biggest red flag for me when I first became ill was that I wasn't hungry.

Because, honeys, I am ALWAYS hungry.

Food began to strangely lose its appeal.


I drank a lot of smoothies. Chugged back a lot of protein milkshakes.


Actually chewing something solid evoked a gag reflex - it was like rolling an wool-covered eraser around in my mouth.

I became engaged in 'shove the food around the plate a little' trickery, in order to persuade my family that nothing was unusual.

One of the hardest things to do at the beginning of this process was the withholding of information. And deciding, like some horrifically skewed triage, who would know first.

Past the immediate family, this became rather tricky.

As a couple, my husband and I move amongst more than a few distinct communities. As a family, the number becomes exponential.

So, who would be the perceived favorites, the darlings, the intimates? Who would get all bent out of shape when they heard wispy rumors floating around?

This process - for which there should really be a playbook - became a source of much anxiety. Because this is truly what one needs when one is faced with some pretty serious shit.


Mind-bending, paralytic, medication-numbed anxiety.

I would have to say that this decision-making really drew some lines in the sand. Like I cared. Okay, I did. And I didn't. Simultaneously. The clarity of it all was pretty immediate and acute.

Color me enigmatic, but if you and I have not more than an passing acquaintance, is there some sort of social contract where I am obligated to make you privy to everything going on in my life? Or, potentially, what's left of my life?

In retrospect, to those people who were so bothered, so pissy - so insulted - I extend a big "Fuck You".

You know nothing about me, and given your reaction, I am in no hurry to learn anything further about you. With your puzzling agenda, you have effectively driven that train right off the rails. Well done.

The place I probably needed the most but was loathe to go to was our house of worship. Sure, if we had our timing down, we could scoot in right before services started, and make tracks right after the final prayers were murmured.

If, however, we lingered even a microsecond too long, someone would march up:

"Oh my god!" (oh my god, indeed)

"Look at you!" (I'd really rather not - I find the betrayal of my body against me fairly disgusting)

"You look fantastic!" (yes, we all know that that's all I am - the sum of my looks. I have no depth, no purpose. That's all I do. I look good)

"How much weight have you lost?" (Oh, about 30 pounds...so far)

"What did you do?" (well, it's the darndest weight loss program ever...)

What did I do?

Here's what I did - I decided not to be amongst situations like this anymore. I decided to draw my beloveds around me, and jettison out the rest. I decided who meant anything to me and who didn't anymore.

And for that, my mild acquaintance, my awkward chit-chatter, I rescind my earlier "Fuck You".

For that- instead - I sincerely say, "Thank You".

For, while you navigated me directly into such difficult terrain at beginning of this path I walk on, in turn you taught me to seek out the refuge amongst the jagged rocks.

And to seek out a path I can choose to walk.

Saturday, July 24, 2010

A Bumpy Start

What. The. Fuck. is that noise?

It's not quite a grinding, and not quite a squeaking. It's like a combination of hard plastic and 3" foamcore, slo-o-o-o-o-owly being pulled against each other. Or maybe styrofoam on a blackboard.









I have now officially gone into bunny mode.

I'm on my hospital bed, in this room I've been jettisoned into, arms encircled tightly around my legs.

Rocking ever so slightly with my pounding heart.

Breathing, shallowly. Imperceptibly.

Like maybe if I make myself small enough, quiet enough - still enough - I'll disappear.





It doesn't really matter that there is a pause between, because the sound continues to reverberate, through each of us in the room.

It bounces off of piss-smelling floors and mint green walls, off of stained ceiling tiles and metal beds.

It is no coincidence that this bed that they've found for me, for her, for them, is mere steps away from the palliative ward.

It is no coincidence that this grind/stop/grind/stop/grind/stop/grind/stop is a physical manifestation of his shifting of gears; brakes on, skidding, not wanting to make that last stop.

When I muster up enough courage to actually look on the other side of the curtain on one of my returns to my lair after the bathroom, I feel weak-kneed and a sadness like none I have ever felt before washes over me like a giant whitecap.

Almost as physical as that sound.





Beside me lies a man.

I use the word 'lies' loosely, as he is constant, writhing motion. His body has begun to cruelly, evilly betray him, and now he resides here, every muscle in an involuntary, convulsive, slow contraction.

I use the word 'man' loosely, as he is - to my mind - simply spirit, encased in a flesh vessel.

The grinding sound?

His jaws. Grinding down his teeth. Micrometer by enamel micrometer. They will not get to be nubs; he will make his journey before that.


"The medication may give you some mouth sores".

This statement, factual and crisp, is delivered to me by one of the oncology nurses.

I'm not too stupid to realize that this statement is purely a cover-your-ass statement, not unlike a pilot, who, when steering a plane through a hurricane, calmly tells his passengers "It might get a little bumpy for a few minutes".

At first, all is well.

But then again, I am living in small segments of time.

The first half-hour was good.

The first two hours were good.

But then, regardless of all my shadowy optimism, of my dispassionate semi-belief that nothing bad will ever happen, it does.

Strangely enough, as predicted, the mouth sores do come.

Like gangbusters.

No sneak attack here. Nothing stealthy or sleek about it.

One moment nothing; the next, they're everywhere: palatte, sides of my tongue, throat.

Swallowing saliva is like gargling with broken glass.

In an 'unusual' reaction, I start producing so much saliva, I can't keep up. I'm drowning.

I vomit, I swallow, I drown.

"This is a very bad reaction" says my oncologist. "You must think I'm trying to kill you."

I give him my best dehydrated wan smile. Really? Did you just say that?

Oh, the gallows humor.

Never gets old.

So here I am.

In a ward, getting wa-a-a-ay ahead of myself, mere steps away from where all this might lead me.

And I sit, with more fluids pumping in to - ironically - stop the drowning.

I sit, listening to my room mate. Willing the stupid nurse to stop force-feeding him.

Willing him to stop gurgling up all his food when they're all on a break.

Willing him to go back to Grinnnnnnnnnnnnnnnnnd.


Willing him to make it through the night.

Willing him to keep me company.

Willing him to not lead the way.

Willing him.

Just willing him.

Thursday, July 22, 2010

Where I Went

"Where did you go just now?" he asks, with his soft voice and kind eyes.

"What do you mean?" "I'm right here."

I'm confused.

Knowing that I'm capable of leaving the kettle on the stove, boiling away unattended, I'm a little panicked. Did I actually get up and go somewhere, out of the room? Shit - I'm wandering now? This isn't good.

"I'm right here", I re-iterate.

"But for a split-second, you completely checked out. Your eyes just shut down; you did a total disconnect."

I shrug sheepishly. "Maybe I had one of those mini-strokes - do you smell burnt toast, too?"

I half-smile, hoping this quasi-lame attempt at wit will throw him off this current line of questioning.

But, alas - no.

"Remember we talked about your rich inner life?"


He pauses. He's waiting, patiently, in his professional way, for me to fill in the blanks. I'm not biting today. I know where this is supposed to lead, what I'm supposed to say. I'm tired. Too tired to lift my leg through that hoop.

Different strategy. Fill-in-the-blanks turns out to be a bust. Sorry, man.

He starts anew. "Can you tell me anything about this world of yours? Your..."

"Narnia?" I whisper quietly, almost just mouthing the word.

Immediately, I concurrently feel guilty for being smug and difficult and pleased with the perfect description.

I've never really delved into Tolkien, and - truth be told - don't have any burning desire to do so, but somehow, nevertheless, the idea of a secret private world (accessed through the back panel of wardrobe!) is very appealing to me.

"So...my world..." I pause for what seems like an hour as I scroll through the perils of too much disclosure...

"It's rich, it's real, it's encased within impenetrable concrete walls."


"Sometimes, the door creaks open, just a crack. That always ends up being a mistake."

"Most always, it remains sealed shut.

Hermetically sealed.

Any exposure to the outside world threatens to vaporize everything - it's so beautiful and fragile to begin with.

Harm and destruction can only come from letting anyone in."

"But I know how to tread the paths mindfully.

I know how to gracefully hold the spirit just so.

I know how to soothe the hurts with tender eyes and gentle touch.

Just me."

So, there you have it.

I feel deeply. I fear much. I bruise easily. I trust rarely.

And finally - finally -

I am becoming okay with it all.

That's where I've been.