5. No second chance !

I thought I had all the answers!  I used to think that a 'good' death was infinitely preferable to life-at-all-cost.  But that was before I stared death squarely in the face!
I distinctly remember thinking that I could just let-go, and 'join' my loved ones who had already died.  But then I thought of my husband with a new wife...of my daughters growing-up without me around ...of what I might miss...and I began to fight like crazy!  Boy, was it hard work! I was on a ventilator, but had to initiate each breath and the machine would then 'assist'. So, as one might plod along - putting one foot in front of the other - I forced one breath after the other. Considerations of  quality-of-life did not come into it; my focus was on survival.
As part of rehabilitation, I had regular sessions with a psychologist. During the twelve months that I was in rehab., I had three psychologists, and only one of them tackled what I would term 'nitty-gritty' topics. We discussed suicide. (I use the term 'discussed' loosely, as my speech was still at the grunting stage so discussion was rather one-sided, interspersed with nods and shakes of the head from me.) Things were bad. I was quadraplegic. I had double-vision, and my right eye turned inwards. My 'best' means of communication was blinking (although I was trying to talk again). My world (and that of my family) had turned upside-down. There was a huge possibility of feeling suicidal.
It was a well-founded possibility. Very soon I felt that I could take no more! Quite frequently these days - thirteen years on - I feel like throwing up my arms (only, I can't!), and shouting (only I can't!) - 'Please, no more' . I often feel like throwing in the towel, particularly when I think of all the things I used to do but will never again. I so wish I could wipe the slate clean, and start again.
But therein lies the problem. Starting afresh isn't possible. There is no second chance. You only get one go at this life. THIS IS IT!  And because - to me - the alternative is so final, and so dreadful, I have stuck with it.
I believe that it was Winston Churchill (forgive me if I'm wrong) who coined the phrase 'keep bu****ing on'. That has become my mantra...One foot in front of the other - ceaselessly plodding along ...

This week I shall be discussing mostly: Dysarthria

It is the bane of my life! (Well, actually there are several, but this is possibly the worst!)
There are two main communication problems associated with stroke - dysarthria ('difficult or unclear articulation in otherwise linguistically accurate speech'- according to my dictionary) and aphasia ('difficulty with, or inability to produce words'). I have the former. In spades!
We take speech for granted - most of us. Open our mouths, and out it comes. In fact, a whole load of physical things are involved in producing just one word, and if any one of these isn't quite right, then the words don't come out right either. There is a huge amount necessary for clear speech: facial muscles, tongue, hard and soft palates, and vocal cords. Also the lungs, chest muscles and the diaphragm. I don't think I have got any one of those working properly!  Consequently, I have enormous trouble with speaking ...but I persist nevertheless. Before my stroke I did some public speaking, sang alto in choirs, and at the time of the stroke was Chairman of the local Choral Society. Now, singing is out of the question, and, on a good day my monotonous voice resembles a cross between Marge Simpson and Darth Vader. On a bad day I am almost completely silent! (How fortunate it is that I have retained my expressive face!)
It infuriates me how people who don't know me treat me as if I am stupid, just because my speech is slow and unclear (added to the fact that I am in a wheelchair). Come to think of it, quite a lot infuriates me about being dysarthric!  It is a cardinal sin to pretend to understand what I am saying when people don't have a clue. The glazed expression and the knowledgable nod plus 'Uhuh' that gives it away!  Even folk close to me consider it a kindness to finish my sentences for me. More often than not, they supply the wrong words so I end up finishing the sentence anyway - but in a bad mood to boot! Many people seem to dislike silences...and start talking just as I am taking a breath before speaking myself. Telephone conversation is almost out of the question - not only for this reason , but also my speech is so quiet and unclear.
There are those who doubtless think that I am my own worst enemy. Right from the start, (when I was Locked-In, and 'conversing' with eye-flashes to the alphabet), I took perverse pleasure in 'spelling out' really long words - and watching the expressions on the 'listeners'' faces as they built up these complicated words.
Much later, when I was learning to talk again, and trying to cope with my dysarthria, mySpeech-therapist suggested I concentrate on saying short, snappy words to attract people's attention, or to express my needs. For example: Hey!, Drink! or I'm cold!  Hang that for a lark!  I feel bad enough, having to have everything done for me, without barking orders as well. One of the earliest phrases I re-learned was 'Thank you' In addition to the obvious expression of gratitude for the task, I felt that this helped me maintain a modicum of self-respect.


I could keep banging on about how I hate having dysarthria, and would probably bore you rigid! Instead, I will end by saying how distressed I was when some-one close to me said 'This is your voice now. I have got used to it'. It is not my voice and I will never get used to it! I merely make use of it because I have no other option ...