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!
Saturday 24 March 2012
Tuesday 6 March 2012
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 ...
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 ...
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