15 ...and another thing ...

A friend remarked the other day how nativity plays (in schools) had changed over the years, and were now pretty much unrecognisable as such. I have even heard of an octopus featuring in a recent nativity play! Whatever is going on?
I suppose this sort of thing is in the name of inclusivity. It set off two trains of thought .....
It is of course a multi-cultural society that we are part of today. And multi-faith! And some of our schools have an increasingly large proportion of non-Christian and minority-group raised children. And it stands to reason that schools have no wish to prevent any child participating in an end-of-term production. But at the expense of distorting a well-loved, traditional story? Surely it would be better to learn about other cultures' traditional stories, and to learn respect and acceptance of all the diversities of culture and faith in modern society. Surely better than this constant 'dumbing-down', lest some-one might be offended!
And what  of including everybody? Well, the nativity story does not specify numbers of shepherds. Or stars. Or angels. There is no mention of octopi.

My second train of thought went something like this: it seems almost as though we are ashamed to have a faith! Stastitically,apparently now there are fewer people declaring themselves to belong to the major religions, yet alone the Established Church. But, if Mental Health experts are to be believed (and I see no reason to doubt this), a great proportion of the population is still searching for spiritual enrichment: something that used to be 'provided'by one's faith in God (of whichever religion).
Personally, I have often found the atheist stance rather arrogant. It seems to be built on a certainty, and the suggestion is that scientific knowledge will ultimately provide us with answers to all our questioning and searching. That is all very well. I once tried to learn physics. Very early on, it became apparent that much of the 'facts' were actually 'faith'(which, as we know, means 'hope', or 'trust'), not certainty, which I had been led to believe. This was a leap of faith too far for me, and I made  no further progress.
Soon after the stroke, the doctor in charge of my care was showing me the angiograms (X-rays of blood vessels) of my head and neck. The clot which had caused the stroke could clearly be seen (or rather its effects on the surrounding tissues). If it had come to rest a millimetre further on, I would not have survived. The doctor turned to me  and said 'somebody up there was looking after you!'. I nodded in agreement. But neither of us meant that literally. Neither of us thought of a man (or of an angel), sitting up in the sky and looking down deciding that I should live. (Some people would consider it pure chance that I survived)
Similarly, many folk have suggested that I should have turned my back on The Church, as I had the stroke during a Mothering Sunday Service. 'How could God let that happen, especially in His own House?', they say. Well, I don't believe He did, but that is a theological discussion for another time and place!

So,  where did these trains of thought end up? Nowhere really; they just went round and round. But 'on the journey', my conviction was reinforced that whatever one's faith, it remains a mystery that should be cherished and celebrated, and respected by all.

14. Christmas is coming ...

I once was accused of wanting a 'warm, fuzzy feeling' from the celebration of Christmas. Yes! Unashamedly! It is, after all, supposed to be a season of 'great joy'! Yet all around me I see and hear exhortations to spend more money, dress up more glamorously, entertain more lavishly. There is a large amount of stress involved, it seems, and the goodwill it should engender is lost amid the feelings of compulsion, competition and conformity.
I am just as guilty as the next person!  There was a time when Christmas at my house had to be picture-book perfect. If any of my plans went awry, I got very upset; considering my celebration short of the mark, and myself to have failed. Now (since my stroke), although I still spend far too much, I have simpler pleasures, and very different values. For example, wishing some-one 'Good Health' now is a much more meaningful sentiment, and although it was always important to me to spend Christmas surrounded by my family - now I feel that importance more keenly.
So are we all in search of that 'warm, fuzzy feeling'? Maybe. And where is the joy?
At the risk of sticking my head above the parapet again, I suggest that the temptation is to spend our way to comfort and joy! What is in fact a religious  festival, celebrating the birth of a baby who grew up to be - for many of us anyway - God, has become another example of  paying homage to the gods 'retail' and 'advertising'. I suspect that that's what my accuser was getting-at! I now see more clearly, but whether that is because of my age or because of the stroke - who knows?
I shall still aim for that 'warm, fuzzy feeling', but in my efforts to celebrate the birth of Christ, I will strive not to become a slave to those other gods. 

13. Miserable again

My glass is still half-empty. This is a dangerous (and rather uncomfortable) state to be in. For a while now I have been concentrating on what I can't do - and that is a recipe for disaster!
These negative feelings really got going when I decided I wanted a move-round of the furniture. Many years ago (and before my stroke) I would spend a happy afternoon re-organising rooms. I would do this on a whim, and had no trouble pushing and pulling the heavy stuff around until I was happy with my handiwork. How different it is now! It must be several years since I last had a change-round, and there is no acting on a whim. There has to be a plan of action, agreed well in advance. And as for putting my back into moving furniture ...that is a thing of the past! Now, I am reduced to sitting on the sidelines, directing the proceedings.
This train of thought led on to another, more upsetting realisation. Up until recently, my thoughts (and many of my conversations) began with 'before the stroke ...' It all seemed so recent. All the values, all the skills, all the likes and dislikes, all the habits I had then were as if frozen in time. Maybe I clung to them because these, and other aspects of my character were the only things I had left. The 'important' bits of my character still remain, but I can no longer think of it as 'recent'. It is thirteen years since I had the stroke; thirteen years I have been this way. I can no longer revel in the triumph of cheating death, of surviving against all odds, of defying all and sundry to prove the point that I wasn't a 'lost cause'. I am in the 'long haul' that is the rest of my life. And this realisation has made me miserable.
It would be so easy to slide into depression. At one stage it was even an expected consequence. But I am too stubborn for that ...and some might say 'bloody-minded'. So for the time being I will continue to kick the cat (metaphorically of course). Oh, and re-arrange the furniture!

12. This week I am feeling very sorry for myself

I guess that there are many women 'of a certain age' who don't like what they see when they study themselves in the mirror. I am no exception, though this has been made more acute for me as for the first year following my stroke I refused to look at myself! My right eye turned inwards towards my nose, and my mouth was horrendously twisted. Now, although the eye has been surgically corrected, and my mouth is almost normally-shaped, it is still a stranger who stares back at me every time. I do not like, or even recognize the old, fat face I see in the mirror.
For many years I used to be a 'glass-half-empty' person, always looking on the dark side so that I was prepared for the worst (or so I thought!). Then, after the stroke, I became a 'glass-half-full' person. I had to! It was the only way I could survive! I had to focus on what I could still do (not a lot), rather than what I had lost (a huge amount). Every little movement was cause for celebration ...every skill regained (however basic), cause for self-congratulation. I was positive ...always positive!
But now I hear the call of that half-empty glass! The little movements have stayed little! The vast improvement I secretly (well, maybe not so secretly) hoped-for hasn't materialised, and I'm tired of being positive!
I don't like the way I look, or the way I sound. I don't like the fact that I dribble, and burp, and cough without my hand in front of my mouth. I don't like having to be fed, having to be showered (& never a soak in the bath), and having my nose blown for me. I don't like having other people using my kitchen and not being able to drive my car, or dig my garden! I Don't Like an awful lot! I'm turning into a very Grumpy Old Woman!
But hang on a minute. Do I like living at home? (Er...yes); do I like spending time with my family? (yes); do I in fact like being alive? (well...yes).
 It could all have been so very different. Perhaps my glass is half-full after all ...

11. 'There, but for the grace of God, go I'

The plight of Tony Nicholson gave me some serious food for thought. It re-awakened some uncomfortable feelings, brought back some uncomfortable memories, and made me face some uncomfortable truths.
Perhaps the most fundamental loss, when one is 'Locked-In' is that of autonomy. However 'intellectually  intact' you are - you remain at the mercy of others! You can make decisions, but are completely powerless to carry them out. Even making your wishes known is a Herculean task - and there is no guarantee whatsoever that they will be carried out. You are completely dependent on others (in the worst case, even needing a ventilator to help you breathe), and there are no bounds to the frustration of waiting for and watching some-one else doing something you would prefer to do yourself.
Another great loss is that of effective communication. How I longed (& still do) for a good natter, to shout or sing; even to call the cat! Although 'talking' via eye-blinks is better than nothing (and in many respects is indeed progress), it is slow and exhausting. And once again, you are at the mercy of others - to 'listen'.
I was 'lucky'. I was Locked-in for a few months. After that, I regained enough movement in my right thumb to operate a switch, and to drive an electric wheelchair. I regained enough movement in my head to operate a headswitch, and nod or shake my head, which injected some 'normality' into my communication. Even these miniscule 'improvements' opened up my life considerably; I shudder to think of what life could have been like, without them. Over the years, I have acquired some 'speech' (I'm very dysarthric), and have learned to write a bit (the first time I signed a cheque, was indeed a red-letter day!) But even so, I remain at the mercy of others. My whole life is totally built upon trust - and if that trust is betrayed, my whole world falls apart. I have to trust people - in so many ways too diverse to mention - and I have to trust 'things' (electronic, mechanical, and otherwise) to work properly! It is these 'things' that allow me to be 'independent'. But they all have to be set-up and maintained by other people - so I am not truly independent at all!
How much more dependent to be Locked-in! Dependent for staying alive and dependent (as was the issue here) on the manner of dying. There was a lot of discussion of the rights and wrongs of this man's case. And as I listened to the various pontifications I could not help thinking '...but you have no idea of how it feels!) Whatever one feels about the ethics of this, it is surely the loss of control over one's choices that is so cruel. I don't want to die. But I was Locked-in for a matter of months. How I would have felt had it been a matter of years, I don't know.
But one thing I do know is that being Locked-in is being in a Living Hell!

10. Diatribe

There's no escape - I'm going to have to come out with it - I am becoming ashamed of my profession! Whatever happened to Basic Nursing Care?
I know I am not alone in having this criticial opinion.There have been more than a few features on the radio recently concerning poor care - in our hospitals and care-homes both for elderly and disabled people, and at least one newspaper columnist makes it her business to observe and comment upon the care given in these institutions. In addition, I can speak from my own experience (as a Nurse, Patient and patient's Relative), and the experiences of some of those close to me (both in and out-of the medical and nursing professions). I recognize that, in terms of how long it is since I was an active member of the nursing profession, I am a dinasour!  In my heyday we had 'Nightingale' wards (a long room, with a row of beds' - perhaps totalling around 24 - down each side), the daily routine included various task-rounds, and the Nursing Degree was still at the experimental stage - undertaken by very few. Many of the 'old ways' are frowned upon today. But were they really all bad?
'Nightingale' wards undoubtedly had their faults, but at least one could see the whole place at a glance ...and people didn't get 'forgotten'. Those in charge made it their business to know all the people and what went on in their wards  - and the 'buck always stopped' with the Ward Sister or Charge Nurse. These days, some places don't even have these, favouring such entities as 'Team Leaders' (for example). I was appalled to hear recently of a Ward Sister who rebuffed an enquiring relative with 'Oh, I don't know anything about her, you'll have to ask ...'
The most basic aspects of care (food, drink and cleanliness - both of the person and his/her surroundings) are now giving cause for concern. The media have reported critically on all these subjects recently, and I have heard many anecdotes which do not make comfortable listening. One common example of such is that of a meal-tray being left out-of-reach of an immobile person, then removed with no questions asked, when it obviously hadn't been touched. Whenever it is necessary for me to go into hospital in the years since the stroke, I have either a family member or a Carer stay with me - just to make sure that these basic needs are met. Communication - both with the person concerned and his/her relatives - has also, it seems, become a casualty. Something that really bugged me when I was last in hospital was being asked 'Is that alright dear?', then the speaker walked away without waiting for an answer. Not one, but two, errors there! (And the reply was going to be in the negative anyway!)
Of course, there are (still) some truly wonderful nurses, and they probably feel - justifiably - insulted by all this criticism. I have encountered such lovely people both in the hospital and in 'the community', and they have not necessarily been those with the highest qualifications. And certainly not necessarily those with a University Degree!
It is my contention that the personality of an individual plays a much more important role in the quality of nursing care than is recognised. The inherent qualities of caring and empathy seem to be overlooked in favour of academic prowess. Common sense and kindness seems to have been supplanted by the need to meet targets and to save money. But people's basic need for time, attention and respect do not diminsh over time, despite the prevailing political or economic climate.

There; I have stuck my head above the parapet, and I expect to get shot down. But I feel justified, knowing that I am not alone in thinking the way I do. It's probably time to get down off my soap-box ...once again ...

9. Doctor Who?

It occurred to me the other day, (as I was idly thinking - as I am wont to do), that there are quite a few similarities between me and a dalek (of 'Dr. Who' fame).  If I remember rightly, daleks are composed of an amorphous mass of intelligence, enclosed in an inflexible, odd-shaped, body. Just like me! They also scoot along on wheels - as I do! And as for repeatedly voicing a desire to 'exterminate', well, I may not be very vocal about that but I do harbour thoughts along those lines!
 Even my voice sounds like a dalek (- notwithstanding that I have previously described it as a cross between Marge Simpson and Darth Vader.) It is that mechanistic monotone that does it.
Very early on, an Occpational Therapist who had great insight and empathy, said to me ''It must be like being imprisoned in your own body.''  What an astute observation! That is just how it felt, nay feels! It was particularly so when I was 'Locked-In'. Luckily (and surely luck plays a considerable part in this), I was Locked-In 'only' for three months. Three months in Solitary Confinement, able only to think. Then slowly, gradually, I began to break out. Now, although still imprisoned, my 'shackles are loosened' - thanks to electronics (previously described), and the return of a miniscule amount of movement sufficient to operate them. Without this loosening, I don't know how I would bear my imprisonment! To be Locked-In for years on end must indeed be a living hell.
I suppose I am fortunate to see some humour in my situation - and recognize similarities between me and a science-fantasy character! I suppose I should be thankful for small mercies...
Quite recently, the daleks learned how to climb stairs ...Watch This Space!

8.This week I shall be discussing mostly: understatement

The English language just doesn't have the vocabulary to cope with the extremes of emotion I experience. Consequently, some of the descriptions of the way I feel fall well short of the mark. My life is full of understatements. Here are some of the main 'culprits':
Frustration   People say to me 'You must get so frustrated ' or 'It must be so frustrating'  H'm...yes ... and some ...  Frustration is what you feel when you struggle to get a lid off that's stuck on a jar, or that feeling when the car won't start for the third morning in a row. But when you are desperately trying to make some-one understand what you are saying when it sounds perfectly clear to you ... or you're watching some-one make a hash of something you could do standing on your head ...  and furthermore, that it's always going to be that way, that takes frustration onto a higher level. 
Not for me the luxury, when having a row, of flouncing out of the room and slamming the door behind me! Any bad-temper or exasperation I feel just builds and builds - not unlike the pressure inside a pressure-cooker, as was once described to me. (And just like a pressure-cooker makes a dreadful noise as air escapes, I have been known- to my everlasting shame - to wail like a banshee when the frustration was too much to bear.)

Embarrassment I live with a level of embarrassment that I would never previously have thought possible. Before the stroke, I was very intolerant of being embarrassed, and would avoid situations where this was a risk. The stroke blew this to pieces. Everything about me now causes me embarrassment - the way I look, the way I sound, the way I eat, the way I drink; the noises I make, the fact that I dribble, and the scrapes I get into. The list is endless, but it became evident very early on that my life had to go on despite this.  
I remember, one day two or three years after the stroke, making a conscious decision not to hide myself away any more - and began (in a small way at least) participating in the local community, and getting out-and-about. It took quite a while before I would eat in front of people, and even then, I confined myself to sharing a meal with close friends.
' Do as I say and not as I do' has never been so true!  When I brought up my children, I led by example (I hope!), and I was pretty strict. Nowadays, I am far from a good example to my grandson...
The people who look after me make light of my shortcomings, and I laugh and joke a lot. All this merriment disguises a level of embarrassment that isn't comfortable to live with and is really beyond description.


... just a couple of the emotions I feel that are described totally inadequately, but with me constantly  ...

7. It's for your own good!

People who know me can probably imagine my reaction to being told this quite recently! Particularly when the speaker was a young upstart of a nurse, who can't have even been born when I did my nurse-training.

There used to be, in the bookcase at home, a volume entitled 'Meetings Between Experts'. Although a textbook used in Medical Education, and way beyond me, I was captivated by the title. The 'Experts' referred-to are, on the one hand, the doctor ...and, on the other, the patient. And is this not a very important point? We are all experts on our-selves!  Of course the Health Professionals are each experts in their own fields (and quite often just in the theory thereof), but we know how we feel, how we are affected by things, our own hopes and fears, and - to a greater or lesser extent - our own limitations and boundaries. Because of this, we can have confidence in our 'expertise'...but we should also take more responsibility for our own health, and be prepared to face any consequences of the choices we make.
I have been taking risks right from the start. That sounds very 'gung-ho', doesn't it? I can't pretend that it's the wisest behaviour; some of the risks have paid-off and some haven't. Some of the things I have done have been downright foolish!  Yet I maintain that without taking the occasional risk, I would not have made the 'progress' (such as it is), that I have made.
My point is that we should all be 'allowed' to take risky decisions if we want to - provided that we also take responsibility for those decisions. And it shows some maturity (and confidence) on the part of the Health Professional who will, from time to time, be content to 'bite his (her) tongue and see what happens'...  


It's time for me to climb down off my soap-box, I think ...

6. This week I shall be discussing mostly: yoga

I don't think a day goes past without my being thankful for having practised yoga for the twelve years before my stroke ...

I was one of life's 'duffers' (now there's  an old-fashioned word!). I was useless at sport, and disliked any form of physical exercise. Then one day - while I was still a young Mum, some-one suggested I go to a yoga class. I liked the way we were all encouraged to do 'just as much as you are comfortable with' and 'don't try to emulate your neighbour'. Before long, my muscles were strong, my joints supple, and my body felt steadier than it had ever felt previously. I had found something at which I could do well, and spent the next twelve years either as a student in a class, or as the leader of a group practising yoga (it is to my everlasting shame and regret that I never became a qualified yoga teacher.) 

After the stroke, I was visited (as was everyone else) twice a day by the physiotherapist, to carry out passive stretching  exercises. These were dreaded by most people, who regarded them as a form of torture. I, on the other hand, positively welcomed them - and enjoyed the sensation of having all my limb-muscles given a good stretch. I am convinced that this was because I was used to regular stretching, and passive or not, these exercises fulfilled my continuing need for them. 
Likewise, many stroke survivors (I among them) endure muscle spasms, and most of these are very painful. Although the spasms I have are a diabolical nuisance, even an embarrassment, I get no pain. I feel sure that it's because my muscles are used to being well-stretched. I have to confess that I have, on occasion, purposely 'set-off' a spasm...just to feel some strength in an arm or a leg.
Yoga has taught me Relaxation. It's quite a skill - not just 'taking it easy'. A physiotherapist told me some time ago that it is more possible to get a little movement from a relaxed muscle - rather than trying to force it. She's right! Counter-intuitive though it undoubtedly is, and extremely difficult, I do manage to persuade the tiniest (but occasionally the most useful) of movements from my otherwise useless limbs...by consciously relaxing them before I try.
The relaxation techniques I learned were also immensely helpful for dealing with all the horrible things I have had done to me over the years - many of which (although not all) have been hospital procedures. I can't do the breathing discipline properly  - as I have no voluntary control over it, but I can manage to control my muscles a bit. From time to time I still call upon the techniques I learned all those years ago.
It makes my blood boil when I hear anti-yoga comments (such as 'it is spiritually dangerous'), or stories of classes being banned from being held in church halls 'because it is practising a foreign religion'. I have even heard it said that 'emptying your mind risks the devil getting in'. What tosh! It is true that yoga has its roots in Eastern philosophies, but there are many 'arms' to the practice of yoga - one of which is the exercise 'arm'. It is this form of exercise which has been embraced by many of us in the West. In any case, there are many parallels to be found between these Eastern philosophies, and the mainstream religions. As for the devil ...God is big enough to deal with him, surely? I would argue that this fear suggests an insecurity with the beliefs of those who voice it ...but my days of theological argument are long gone!
My (passive) range of movement continues to astonish therapists and carers alike, and I feel sure that my lack of contractures is in no small part due to my earlier practice of yoga. I cannot speak highly enough of it and would recommend it to anyone.

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 …..