Part 13: It's been a while...

Hello again.  Before we go any further I’d better tell you how I ended up in here.  One day in May after the morning routine I fell asleep and no-one could wake me.  The next thing I remember is two men and Sophie in an ambulance, Neil was following behind in a car apparently.   I don’t remember arriving at hospital in fact I don’t remember anything until the next day and then for only five minutes.  Neil was sitting by the bed with some doctors.  Apparently during the night I stopped breathing and was resuscitated twice.  Neil said they are putting a tube down into my chest as a bad chest infection was what I had.  The next thing I remember was waking up in ICU.  The next few days are a blur and when I was awake the doctors told me they would fit a tube blah blah blah.  A tracheostomy was performed and I now breathe entirely through a tube into my throat and lungs connected to a ventilator. 

As far as the Motor Neuron Disease goes, the only parts of my body I can still move at all are my eyes, eyebrows, and mouth in as much as I can just open it or smile.  But I can feel my facial muscles weakening now, though I continue to feel every single part of my body.

I am writing this blog entirely on an Eye-Gaze tablet.  It’s a computer mounted over my bed that tracks my eye movements on a keyboard on the screen a bit like a smart phone set-up, and stores my words, or speaks them a bit like Professor Stephen Hawking but with a female voice!

Other than moving my eyebrows, this is now my only way of expressing anything, myself.

Over six months later and I am still here in ICU.  We got good news a few weeks ago that there seems to be some funding being approved for nursing staff so I can go home.  We met the head of a nursing agency who are recruiting nurses and I also hope to have back my two carers who helped Neil a few hours a day before at home – who I now think of as friends, we have such a laugh together.  Next to Neil, I miss them so much.  So if you know of any nurses with experience of MND and tracheostomies who would like to work between Gorey and Wexford Town, feel free to offer whatever it will take to get them to work for me so I can get home!   Make whatever arrangements you like – I won’t interfere or ask about it – and good looking male nurses may apply too.

Sitting in bed in here with so much time on my hands, it’s amazing what goes through your mind.  I’ve thought a lot about my Mum’s Dad, my Grandfather Corporal William Henry Jones.  I don’t think any of us really know what it was like for them in World War 1, and the fact that those who came back, just came back and got on with life.  He was an amazing man, all the information we have bears out the fact that Mam never had anything negative to say about him.  Then unfortunately you come to his death certificate.  He died in Ballinasloe mental hospital having Alzheimers Disease – a very sad end for a man who had fought in France in WW1 and gave up his family for the love of a Catholic Irish woman.  He was also a gifted musician and I’m proud of him. 

Sadly my own mother got Alzheimers too when she was just 50.  When it started to affect her, black humour got us through it.  In my Mum’s eyes I was her sister Josephine and my sister Catherine was her best friend Emily.  I (as Aunty Josephine) was the translator in conversations of what my Mum was saying in her confused way.  Or as Mum would say - with me in that role - to the real Aunty Josephine, “Tell that old woman this conversation is not her business!”

My youngest brother walked into the kitchen one day, Mum looked at me and asked me who he was?  Aunty Josephine told her “That’s Liam, your youngest child.”  Mum asked “How many children do I have?”  To which I replied “Eight”.

“Eight?” said Mum.  “No I don’t, only a hussy would have eight children!”  I almost swallowed my hand trying so hard not to laugh out loud.

Lots of mad conversations like this took place and you have to laugh – you can’t spend your life in tears.  It seems I’ve got the dodgy gene that has led to my Motor Neuron Disease, but at least I got the good skin-gene too!  I hope I have taken the bullet for this generation of Lynch’s, though we have lost one of my older sisters, Norah, to breast cancer at the age of 47 – one day before her birthday.  Typical Norah; a great, big sister who I will tell you about another time. 

Having lost a sister I know what my other brothers and sisters are going through now, with me.  Don’t worry guys, I plan on being alive for a long time yet – if only to give Neil more wrinkles, or perhaps more kindly, laughter lines!

I will be back writing more when I can.  This is very tiring and has taken me several goes to complete.  Don't forget to join my Facebook Group where other bits and pieces are posted, mainly by Neil, just to keep my family, friends and supporters up to date between blogs.

Thank you for reading and thinking of me.

Ciao!

Eimear X