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I’d like to thank the Academy…

“It’s been a helluva 9 months filming for the made-for-tv-movie version of my life, but I wanted to thank the Academy for recognizing my role in being a chronic badass and illustrating the necessity for equality for the chronically ill all over the world…”

Pppppfffffbbbbbtttt…They can’t make this shit up for the movies…no one would believe them.  There are movies about cowboys and aliens, for cripe’s sake…but not this…NEVER this…

Today would be considered, for me, and by many, to be a “bad” day.

I will, today only…a limited time offer…illustrate what a “bad” day looks like.

“Blood and Gore”: referring to the mental imagery of how it would look if my outsides matched my inner pain.

“Intense Violence”: referring to the insatiable desire to throw someone through the window because of their lack of understanding.  That, or just the need to bitch-slap them.  Repeatedly.

“Strong Language”:  Dude.  I think some of my posts make this point self-evident.  I fucking LOATHE feeling like this.

“Mature Humour”:  If I can attempt any humour at all today , it’ll be mature humour.  It’s much more funny and raunchy and oh-so-very ironic, given that I want to go back to when I was 6 years old and didn’t feel any pain at all…

“Nudity”:  Caused by a lack of internal balance so intense it made me fall off the toilet a few days ago.  There should also be a “humiliation” factor attached of having my “I’ve-earned-this-ass” literally going ass-over-teakettle on the bathroom floor.  Not so very sex-ay, is it. 🙁

“Strong Sexual Content”:  Meaning? If you think you’re gettin’ any, “it” will be flying out the window (see: “Intense Violence”).  Can’t think of a stronger way to say that.

“Use of drugs or alcohol”:  No. Fucking. Kidding.

Unfortunately, it’s my use of “drugs”, aka, the medication that is supposed to make me feel oh-so-very-much “better”…that is augmenting this feeling of “holy crap just let me die already”…at least until the adjustment period fades away.  Ain’t that nice?  Again, I don’t feel the pain, but oh-em-gee I cannot feel this way for weeks on end…I just cannot. “Opportunity Cost.” 🙁

What makes today worse, is that last night I had one of my “cry like your soul is breaking” scenes…It was like my body, my mind, my SPIRIT just up and gave me the middle finger salute and said, “See ya!”.

I don’t know how my soon-to-be-husband does it.  I really don’t.

He held me on our bed while I cried.  He brushed away the tears and the little strands of hair stuck to the side of my forehead by the salty wetness.  I couldn’t even see the tears in his eyes because I could not open my own.  The salty water stung and burned my already flared eyes (due to the Sjogren’s).  It felt like my eyes were on fire.

I couldn’t make my body move.  My arms felt like they weren’t even mine.  I don’t remember feeling my legs.

For a brief moment in time…I gave up.  I gave up on being brave.  I gave up on making the invisible visible.  I gave up watching people taking my catch phrases, my writing style, my ideas, my thoughts…the very essences of what makes me, “me”…my outlets for *MY* pain and frustrations…I gave up on wanting to inspire and teach and share…

…and he held me…and he whispered, “What can I do?”…knowing full well there was not a viable suggestion available to him…

So, this morning, after three hours of sleep, I willed myself to get up.  I pushed through the fog and the blur and the fire underneath my swollen eyelids.  I made it into the shower and willed my arms to lift to my face, my hair…willed my hands to grasp soap and shampoo and poufy loofah thingy…

I willed my legs to walk down the stairs and not weeble-wobble, thus ensuring my “I’ve-earned-this-ass” remained upright.  I made my daughter her lunch for school.  I willed my fingers to close the zipper on her backpack.  I willed my feet to carry my body the length of the road to the bus stop and back.

I cannot cry.  I’m so tired I want to vomit.  I’m so tired that I cannot.

And today will pass…as each day does…and I will be here again, inspiring and teaching and sharing…

Today is all but a moment in time…a scene…a “take”…in the chaos of my made-for-tv-movie kind of life.

“I’d like to thank the Academy…”

1 Comment

  1. Ghislaine Yergeau

    Oh hon, you’re one of the bravest women I know, and you bring tears to my eyes and I just want to cry and hold you and make it all better – if there were such a thing, and even wave a magic wand and take it all away from you… How I wish! Sending you lots of love.

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