Saturday 30 April 2011

The View From My Couch: Tiny Umbrellas.

Well it's been a rather rough couple of weeks on the health front (hence the lack of posting).  Sad that I'm becoming rather sentimental about the 'good old days' of normal Bob symptoms.  But what's a girl to do?  Break out the tiny umbrellas of happiness, that's what.  If I'm going to walk like I just sculled a jug of margaritas, I might as well at least have the mini umbrellas.  And they are so pretty.  So here's to glasses of water, rimmed with salt and a cheery little umbrella on the side.  Though, a little medicinal tequila wouldn't go astray.

Tuesday 19 April 2011

Twenty Years

Twenty years ago today Mr Grumpy and I went on our first date.

I've known him for more than half my life.

It's hard to wrap my head around that.


Nervous laughter.  Mumbled words.   Furtive glances.   Attraction.  Uncertainty.

20 years would have seemed laughable to us both.


His presence is comfort.

No need for fancy words. No need for overt demonstrations of love.

Silence is embraced, not feared.

A simple touch.  Our fingers entwined.  His hand on my leg.  My head on his chest.

He laughs at my jokes and I at his.

Even though we each know the others repertoire by rote.

We are both wider.



Youth has been replaced by 'character'.

Yet when he looks at me I'm still that 17-year-old girl, and he still that 18-year-old boy.

There are no words worthy to describe the bond created through those 20 years.

It is a creature born of time.

Of anger.  Of tears.  Of laughter.  Of love.

Thousands of fibres intertwined.

No beginning.  No end.  Ever changing.

I read an article recently about a Sliding Doors life.  About making choices too early.  About whether we would make the same choices given our time over.

As I write, there is a single, long-stemmed, red rose sitting in front of me.

20 years later, and he still remembers that first date.

There is no choice to be made.

Michelle :)

Sunday 10 April 2011


Being ill sucks.  It really does.  There's no two ways about it.  There's no sugar coating the joy of having an 80-year-old's body, when your only 37.  Doesn't matter your poison.  Could be Bob.  Could be MS.  Could be cancer.  Could be one of the other bazillion diseases, disorders and syndromes that pop up just to lay a large steaming nard on your life.  Nosology doesn't matter.  The result is the same.  Life turns upside down.  And where once you were tripping the light fantastic, you are now scrambling to recover your dignity and equilibrium after face planting in a big pile of the universe's fecal matter.

(Sometimes life just doesn't turn out quite like you imagined)

And when you're lying in that large pile of turds you can do one of two things.  You can cry and gag and try not to barf. You can woe is me.  And convince yourself the universe hates you.  Or, you can laugh.  Big belly laughs.  Guffaw and snort laugh, until you have tears running down your cheeks. 

That's not to say it's not okay to cry and swear at the universe.  I've been there done that and got the crappy t-shirt.  Grief and Illness are bound together.  You can't have one without the other.  You can't find the funny, or take back ownership of your life, until that grief is acknowledged, embraced, loved, slapped around, purple nurpled, and put in the naughty corner. 

And finding that funny in the most unfunny of moments is all about ownership.  About copywriting your experience.  About taking back control.  About saying this is mine, it belongs to me.  I may choose to share parts of it with you, but this is uniquely mine. And I don't really give a crap what you or anyone else thinks.

Those who aren't, or haven't been ill often find my reaction to being sick a little hard to understand.   Hell, even most doctors don't get my sense of humour.  I still remember the gynecologist who whipped out my uterus back in the day going on and on about the fact that I would no longer feel like a woman, and all I could think of was this Monty Python sketch from The Life Of Brian.  Was my reaction wrong?  Should I have been more serious?  Should I have felt less womanly?  Should I have ascribed to his belief and spent the rest of my life grieving and being 'less'?  As far as I was concerned he could take my dysfunctional and disrespectful womb and boot it up the arse.  I've never missed it.  In fact I celebrated it's removal.  Given the comically perplexed look on his face, I don't think he quite understood that. 

And so it's been since Bob came on the scene.  I've done the tears and the woe is me, and frankly it's exhausting.  Even I get sick of myself when I get like that.  I could sit back and let it consume me.  I could hand over title to my body and my life and sit back in a miserable state of perpetual helplessness.  A seductive choice at times.  That would be my right to choose.  But it's just not me. 

If I were to sit down and list off every broken bit in my body, if I were to look at my ever increasing list of diagnoses, if I were to look at my ever decreasing functioning, my ever increasing pill collection, 'tis all rather depressing.   The reality is that I can't change what is happening physically, I have no control over that.  My body will continue to go along on it's own merry way, and I'm just the unlucky side kick along for the ride. 

But I can control how I respond to what my body is doing.  I can decide how I am going to deal with what I face on a daily basis, and the rather scary unknown that lies before me.  I am going to choose how I experience this.  I am not going to act my illness, and no doubt I'll be one of those old ladies who doesn't act her age.

It's not about being brave or courageous, those words are overused these days. Instead, it's about making a choice on how to live your life.  It's about deciding to change your perspective and not letting anyone else, even your own body, dictate how you experience your world.

Illness takes away choice, it leaves you powerless, or so it would like you to think.

Those who have faced, or continue to face, illness know the power of perspective, the power of laughter.  Of finding the funny in the most unfunny of circumstances.

I will live my illness how I choose to live it.

Not how anyone else tells me I should live it.

This experience is my own and I will make of it what I will.

I will shape it and mould it.

I will alter it at need.

It is my work of art.

I will tell inappropriate jokes.  I will shock my doctors and those around me with my supposedly unconventional attitude.  I will put pink glittery feather boas around my puke bags.  I will name my doctors after Motley Crue songs and ask for my angioplasty balloon to be shaped like a unicorn.  I will make totally inappropriate glittery red Dorothy Shoes that I can never walk in.  I will laugh at the fact that my boobs are a garden or, that more recently, my lady garden has decided to grow a rather scary weed.  And I will not apologize to those who think I should be more dignified and serious.

Each of us must make our own choice as to how we deal with the cards we are dealt.

Each of us needs to ignore those who throw the word 'should' in our face.

Despite Bob and his ever increasing possee of abnormal peeps, this is still my life.

And I will live it as I want. 

Michelle ©

Alive and Brilliant, Deborah Conway 1993.