Wish you were here?..

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This morning I read this; http://www.guardian.co.uk/society/2011/aug/14/miranda-sawyer-midlife-crisis-mortality.  It’s a well written, thought-provoking piece; humorous & very relevant to those of us ‘of a certain age’.

I, too have lived over half of my life;  I’m 45, I’m a Mum, I’ve done stuff.  Admittedly not very MUCH stuff in the great scheme of things but, thanks to all the sacrifices made over the years, I still have so MUCH to fit into my remaining years!  Well, actually, I probably don’t.  Just as the kids were reaching an age of independence & I could almost TASTE my forthcoming freedom, the shit well and truly hit the fan.

Multiple Sclerosis.

It’s not often that I really allow myself to look too hard into the future.  My future, you see, is going to be very different from yours.  Upsizing or downsizing the home, learning to love gardening, 3-month cruises around the Med, teaching the grandkids to kick a ball,  learning how to speak Japanese, churning out that novel inside you – all that kind of stuff is probably beyond me.  My future looks more like this;

1. Going back to New Zealand – never going to happen. Disability Benefits don’t pay that well & how the hell would I manage the flight/getting around?

2. Grandchildren – (now this one really hurts) You know that downy softness of a newborn’s cheek?  I’ll never, ever feel that again.  I simply won’t be able to FEEL my grandchildren at all.  I wouldn’t trust myself NOW to be able to hold a wriggling infant with these numb hands, never mind in a few years’ time.  Maybe I could learn to change a nappy with my feet – except I haven’t felt those for over a decade either!  The simple charm of being able to take my grandchildren for a stroll in their pushchair will never happen for me.  I’m not looking forward to arriving at this particular milestone at all.

3. Learning stuff/writing that novel – I can barely concentrate through a reasonably long film & I forget words all the time; simple words like chair, book, kettle.  I talk as if someone is randomly pausing the tape!

4. Holidays generally – organising a holiday when you’re disabled is like trying to perform origami with water.  Where is suitable to stay?  How will I get there?  Does it have the adaptations I need or can muddle through with?  Will it actually be worth all the effort and EXPENSE?  Yes, often holidays for those of us with mobility issues are so bloody dear.  I think folk assume that disabled people shit gold or something & I can assure you we don’t!

5. How much longer am I going to be able to walk?  I say ‘walk’ but, currently, it’s more of a totter; a dodder; a shuffle and even that can’t go on for very long at all.  Living Room to Toilet & back – that’s pretty much the limit.  If I make myself a cuppa I have to sit down halfway through.

6. Talking of the toilet, my bladder’s on its way out; belligerent & unreliable.  If I can get through the week sans pissing on myself, it’s a Tiny Triumph.

7. The Guilt.  The guilt of subjecting your family to a Diminishing Parent.  Keeping a lid on frustrations & concealing the latest symptoms for as long as possible.  Staying involved & engaged & smiling; always smiling.

So, here I am, over halfway through my life.  I looked to the future today & I’m really going to have to kick its arse!

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