Life with MND - July 2014

Unless something dramatic is happening regarding my illness I thought I’d tell readers of what I’m sure formed my mind set, personality and how  I’m  coping  with the drawn out type of  MND that I  appear to have.  

Contentment 

My description of the word is the inner satisfaction accrued over a lifetime.’ It comes to one who learns to bear  what they cannot change, or one of Mum’s favourite sayings ‘what’s in front of you will not go past you’. Having  always had a strong fatalistic belief helps get my head round this.  Now that I’ve explained contentment, lets get on with my childhood. 

I’m the youngest of five brothers:- Ian, Willie, Bob then our parents had a ten year gap before having Allan, and me. 

Very sadly, Allan and me lost our three older brothers who all died well into their eighties, the five of us got on so well together!.

M um would have been 38 and Dad 37 when I was born and I remember Dad as a quite hard worker, who as a farm worker was out during summer months doing general farm duties, but in winter months until early spring, when beef cattle were indoors, he fed and tended them 7 days a week including no break over the festive period.  I’m sure the older brothers would have different tales to tell on his younger years.

Dad was the bread winner whilst Mum was always there ‘for her boys’ and tending all our needs, with Dad taking top priority over us all (this priority was entirely Mum’s attitude to their marriage, as Dad was no way demanding, he just went with the flow’).

What definitely shaped my personality was a speech impediment, I suspect hereditary, from Dad’s similar affliction. Mine was not so much a stammer as a halt when asked a specific question, such as my name, and my voice would just freeze.

To me, certainly in my teenage years, there were two options, be bold and brash, or avoid being in the limelight of those in authority which may ask me specific questions - I was definitely the latter! Yet, this is where my challenging nature came to the fore. 

 I went to a speech therapist in the early seventies and she was surprised at how I could disguise my impediment - consequently saying there was very little she could do to improve my speech, but thanked me for the learning experience I’d given her.

In an earlier comment of my story I mention that I like a challenge and when I felt relaxed with the situation I’d move on to another challenge - as there were few days in my lifetime when my impediment didn’t cross my mind in some form or other. Until my very early twenties I was very self conscious of my speech defect, but then began to see it a part of me and something I’d to live with, accept as a challenge, and try to overcome it, or discreetly disguise it.

The earliest I can recall was at primary school if told to stand up in class and read  in  front  of the  class. Secondary school went ok with no real embarrassing situations arising that I can recall. On leaving school I got a job at a commercial market garden – that also went well.

In 1955 I was ‘called up’ to do my national service for two years in the RAF. This for ‘a country lad’ who had never been outside Scotland was daunting, but a great adventure, in fact, I always say over the two years it was one of my  memorable lifetime experience and say it’s a disciplined military environment  that all eighteen year old's would benefit from.

The only downside was in the mandatory eight weeks ‘square bashing’ where all intakes for that period congregated in a large hanger to get paid. This was done alphabetically, so as my was McKenzie I’d a long wait of creeping nearer the front and shouting out Sir, and last three identity numbers- mine was 141- the anticipation and negative thoughts that had built up after an hour of waiting often led to panic with speech and more than often than not had to call my name a second time- with their unsympathetic and aggressive manner of having to call my name again was a horrible humiliating experience.
However, I forged ahead with my tenacious and challenging nature. From being in charge of a garden nursery complex to working in a garden centre where I’d to constantly converse with the public. Then I applied for a position, and got it, as Head Groundsman in the civil service at a fully operational air station — it involved 2,000 acres between airfield and domestic areas. Again, I’ve had a fear of using the phone with my speech, but in 1969 I opted to accept the position of ‘area Grounds Maintenance Officer’ for the north of Scotland based in Aberdeen, which involved lots of phoning and travelling.

And finally in my early sixties I joined a collection of entertainers where my participation was singing, playing mouth organ, jews harp, reciting monologues, and the occasional joke.  My time in the band was so enjoyable and fun times, but  was cut  short in 2003 when MND got to the stage that I had to, very reluctantly, give it up. We mainly performed for old folk’s homes and the like, so under no pressure. It was a great way to end my speech impediment being on stage with an appreciative audience. 

My motto throughout life is at the end ‘never regret the things you never done’ inevitably, there’s been a few wrong turnings we’ve taken in our lifetime, but as the song says ‘regrets we’ve had a few, but then again to few to mention’.

So, in spite of the speech defect and this prolonged ‘hellish disease’ of MND I’ve been inflicted with, Frustration has often crept in at not being able to express myself, but I’ve accepted my lot, and never thought ‘why me’— maybe there’s ‘nothing befalls one except it’s in their nature to endure’

Overall I embrace all that’s good in my life still-- like the 24/7 care provided by Jean who now has to do silly wee things, but to me important—like switching on my computer and TV. Also the council’s dedicated team of carers which gives Jean a welcome break - plus with no pain this is indeed a blessing! I could go on about quality of life items, but won’t.