The Gaga Suit

For this first week A.D. I spend 15 minutes before the school pick-up hiding in the empty sick bay (nurse’s office) behind the teacher’s lounge.  I wait here for the school bell to ring.

I can’t face anyone.

I don’t know what’s happening.

I’m afraid of the question, ‘How are you?’

I am scared of my own shadow, mostly because it has changed.  Everything has changed.

I walk around in a spiky glass suit.  It’s as comfy as a porcupine costume turned inside out.  Crazy, torture couture.  Very Lady Gaga.  A designer suit with a special lining of glass shards made for, not the extremely rich, but the extremely uncomfortable.  It’s mine.  Got it at the very exclusive oncology reception desk.  Fuck.  Even the anticipation of any move is frightening.  When can I take this horrible creation off?  I can’t find the zip.

The other thing I didn’t know …  its’ invisible.  Cliff and I went to the shopping centre (mall) to get him a nice leather-bound journal to write all his notes in.   Since he is a scientist, he understands the world through patterns and takes incredibly detailed notes in his work. He wants a notebook to record every question he needs to ask the doctors and all the answers he gets.

This whole thing is so unbelievably, horribly strange and bad that I try at every moment, every opportunity, to look for ways to make it somehow less horrible for him, for us.  If I salvage some piece of joy, no matter how fragmented, from each moment I am ‘doing’ something positive, counterintuitive to the situation, and I have an unconscious theory that it neutralises, at least in some small way, the negative situation.

Cliff said he wanted a notebook and instead of getting a spiral bound, I wanted him to have something that was pleasant to hold onto and to look at.  And I wanted to make the outing, to buy it, nice as well.  So I suggested we get a small, leather-bound, refillable notebook and that we stop at the outside cafe at the mall to have lunch together on our way.

I had the waitress take this photo.

Esser & Cliff at Coffee shop

Being out, in the middle of the week, with the love of my life on a lunch date is a completely novel situation and I wanted a photo of it, instinctively trying to focus on the good moments of the day.  But when I looked at the photo after she handed my phone back to me I was creeped out.  It was freaky and … wrong!  We look so normal!  We actually even look … happy?!  WTF?! Like an ordinary middle-aged, middle-class, healthy, happily married couple having a good time at a café together.

No one can see this horror.

It’s so real, so palpable, so visible in everything I see … but it’s invisible.  That must be how people feel alone.  No one can see what they’re going through and they don’t know how to sprinkle magic dust on their invisible pain to show the ones they love where the hurt is.  This writing is my dust.

Here is a sweet image I found on pinterest.com.

The best things in life are unseen

Today, I would say, ‘The most important things are unseen.’  Not just the best.  It is true of the best but also true of the worst things in life.  All unseen.

Isabelle, my sister, rang me last night.  She lives in Boulder, Colorado.  She says she’s flying out … today.  My parents, who emigrated to Australia from Boulder ten years ago and now live three minutes from us, must have rung her.  I haven’t had time to call anyone yet.  I’ll pick Isabelle up from the airport tomorrow morning after I drop the kids at school. My parents would do it, except that my dad is taking my mom to the hospital tomorrow for a little day-procedure on her eye.

Isabelle is coming alone.  Her husband, Michael, works for a big financial brokerage firm and she’s flying out Business Class on his air miles.  He’s not coming.  Not here at least.  He is going to meet her in Queensland next week, where he has some clients to see.  She explained he doesn’t ‘do’ sickness and he won’t talk about Cliff with her.  That’s O.K.  It will be nice to see her.  I haven’t seen her in eight years, since Mitch’s funeral.

Love, Esser

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