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.