18 December, 2010

Motor Neurone Disease

Hmmm.  Fate perhaps?  Cruel fate in my opinion?  Last night himself fell asleep so I was flicking around the TV and landed on the Late Late Show.  Colm Murray was on it.  He's been diagnosed with MND.  I didn't sleep last night.  Mainly because I am now worrying about the fact that my right hand and arm is giving me gyp - it keeps seizing up and spasming.  Also because I am terrified of that disease.  My mam died of it.  Not of it because the disease itself can't kill you but from complications arising from it.  In this case, pneumonia.  She died on her birthday aged 54.  I'm starting to look like her I'm told.  Can't see it myself, I can hear her in my voice though.  Not a bad thing.  She was like me or I'm like her in that we both love(d) to talk, banter, laugh, but above all we both talk(ed).  About anything and everything.  She read everything too.  I miss her every single day. It never really goes away.  I feel cheated a lot of the time.  I was only 24 when she died.  My poor brother and sister were 16 and 20.  
But most of all I hate that disease because it stole her ability to talk.  I think that once she lost her tongue she kind've lost the will to live.  She died shortly after.
I hate what that disease did.  It stole her movement.  Her voice.  Her laugh.  But it left her fucking mind working on and on.  A perfect mind.  A mind that was quicker than mine and a brain that absorbed books.  A brain that worked in a body that wasted away.
I don't talk about my ma much.  I can't.  I make a joke of how she and my da bought me a lovely house and a car but I don't talk about it because I can't.  
I hate that disease because, although rare, it can be inherited.  I have three beautiful sons, a wonderful husband and I am truly blessed with some wonderful friends - WONDERFUL friends, never mind my lovely brother and sister and I am terrified that one day I will walk out of hospital with the same diagnosis. 
I'd take cancer of any kind over something that would rob me of my body and my voice.  I'd take any kind of death over this horrible, malevolent disease.  
I am terrified of this disease.  
I'm typing here with my buggered up hand and, on another tab I have open, I am flicking backwards and forwards to the Irish Motor Neurone Disease page.   Checking out the symptoms.  The latest developments (none - you still waste away and die) and the funding they need and the wonderful carers that are out there.
I wasn't a great carer.  I excuse myself by saying I was a kid. But so were my brother and sister and they cared. They were so much better than me, have never plucked up the nerve to say thanks - old wounds etc.  I was too afraid.  I hid whenever and wherever I could.  I hate that fucking disease.

So, to Eoin and Fiona I apologise and say thank you and to everyone else I say please give what you can to the wonderful IMNDA as they deserve it.

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