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 ...

3.How many (people) does it take to ...?

Recently, when I was feeling rather 'down', I began considering just how much was involved in keeping me alive and 'functioning'. Following the latest reports on the radio, of the neglect of some elderly people, I also started wondering how long I would last without the input of others. That gave me the heebie-jeebies, so I soon stopped that particular game and returned to my original musings. 

I concluded that there are three main 'things' on which I am dependent: Electricity, Computers and People.


There are rows of chargers in my house! One for the wheelchair, one for the hoist and two for the environmental controls. Even such ordinary items as the toothbrush and the phone have their own chargers. In addition, although the environmental controls work by sending radio-signals, the devices they control require electricity to power them. So, in addition to the obvious things like the TV and table-lamps, there is also the door-opener and alarm - without which I am not, strictly speaking, safe to be left alone. So, without electricity I am really stuck ...unable to do anything except sit and watch the world go by.
We have had computers (of increasing sophistication) in the house for most of my married life. I used to hate the computer. With a passion!  Now it is my lifeline, and I would hate to be without it. With it I can keep in touch with folk (either by email or skype), I can catch up with radio TV and film, and I can make the lists - for which I am famed within my circle - which keep some semblance of order in my life. I also organise my finances and pay my employees' wages - with Internet Banking, and shop for groceries, gifts and other goodies on-line. I was even able to study with the Open University last year, courtesy of the electronic delivery of the Course Material ...and of course, there's now this! In short, the computer enables me to carry on doing many 'normal' things.
Last of all, and the biggest group, is People. I have a team of six 'personal assistants ' (carers), a housekeeper, and a gardener. My GP, other Doctors, District Nurses, my Counsellor, other Health-Professionals...they are all involved in caring for me - to varying degrees. Then, of course, my close family, my extended family, and my friends are all an incredibly important part of my wellbeing. A veritable army involved in my welfare!
It reminds me of the old joke - 'how many (whatever) does it take to change a light-bulb?'    In this case - one heck of a lot!
I'm awfully glad somebody, somewhere, thinks I'm worth it!

2. This week I shall be discussing mostly ...

During the 90s, there used to be a TV sketch-show in which one of the sketches involved a 'rustic' character emerging from a garden shed. Each time he did, he announced in a broad dialect (something like)-'This week I shall  be wearing mostly ...' - followed by some sort of sartorial extravagance. I am reminded of that every time I think  of what to talk about ...'This week I will be discussing mostly ...'


When I had the stroke (over ten years ago now), and was 'Locked-In', there was a dearth of things to read to give me or my family a crumb of comfort or encouragement. A trawl of  the professional magazines yielded a few, dry articles on the subject , which were far from  encouraging; for two main reasons. Firstly there were very few reports of people surviving a brain-stem stroke  that severe anyway, and secondly I did not show any of the early signs of improvement deemed necessary as indication of any sort of recovery. Back then, Facebook and Twitter were merely a gleam in their developers' eyes, and blogs just did not exist! So we as a family felt very alone. Our amassed medical knowledge had not prepared us for this.
For some reason, several people gave me copies of 'The Diving Bell and the Butterfly' (the acclaimed narrative by a French journalist enduring the agonies of being 'Locked-In'; subsequently made into a film). I can only assume that they thought it might be an inspiration to me - in my 'Locked-In' state. It was not! To this day, I have been unable to get beyond the first few pages . It was and is all too familiar - and depressingI found Christopher Reeve's (of Superman fame) autobiography much more encouraging. I was given two copies of that, as well.
I felt very alone in my situation, and we as a family felt very alone - as if nothing like this had ever happened to anyone else, and no-one else could possibly feel so wretched. Over the years I have seen clearly that this is not, and was not, the case. There are many who endure similar nightmares to ours (and worse!), and who make the best of the hand they are dealt. That does not, however, lessen the feelings of isolation which, iI suspect, we all have . I would like to think that by reading this, at least one  person might feel less 'alone', and might be strengthened to keep fighting! Perhaps, amongst my prattling, there might be something which strikes a chord, and provides some extra encouragement. Perhaps ...


Well, it was not my original intention to talk about lonliness. Funny how things turn out, isn't  it?
Now, I feel very alone again ...but that is a different story ...

SCRIBBLINGS OF A STROKE-SURVIVOR

Some days I don’t feel like I’m a Survivor at all; I feel so sorry for myself, that nobody else could possibly feel as bad as I do, and that no-one knows – or cares – how much effort it takes to appear as ‘normal’ as I can.

This is clearly absurd! Ever since my stroke – in 1999 – I have been surrounded by love and support. Throughout the first year and a half my husband (now estranged) and my daughters provided me with company for most of the day, every day (- I am still in awe of their devotion!). Other members of our family and close friends gave (and continue to give) untold support to me and to them. Now that I am home – and have been for over ten years – I have got a superb team of personal assistants (carers), who give me practical help and emotional support every day. So I have rarely had to face things on my own. But, the fact remains … some days I feel more of a sufferer than a survivor.

I have always liked to ‘talk in pictures’. Metaphors have always played a big part in my use of language; they seem to illustrate my meaning where mere words are totally inadequate. Many years ago, my favourite - when describing the feelings people might have when suddenly finding out something dreadful – was ‘like being hit on the back of the head with a spade‘. Well…having a brain-stem stroke at 43, and being quadriplegic and dysarthric as a consequence was pretty much like being hit on the back of the head with a spade – and after all these years I am still seeing stars…

To say it changed my life, and that of my family and friends, would be an understatement and a half. From being a fiercely independent person, I have become someone who is almost totally dependent. My relationships have changed from being ‘give and take’ to ‘mainly take’…and some (but mercifully very few) have broken under the strain. I hate the notion of being a ‘vulnerable adult’, but officially that’s precisely what I am! Life for anyone close to me, is turning out very differently from how we originally envisaged it. Just as a stone tossed into the water sets off a series of ripples in ever-increasing circles, so  the this stroke has had huge effects on the people and things in my life, seemingly knowing no bounds.   

 And those ripples just keep on coming …..