If there is one thing that I hate, it is having an idea earlier in the day, that vanishes totally. Don’t tell me that I should have written it down, I know, but even though I am totally aware, that I no longer even own, something, anything similar to a memory, I still trust it, because I’m still human. It doesn’t matter how many times this has happened, or even if I changed it from memory to the ability to do something that I haven’t done for years, the result, would still be exactly the same. I simply haven’t learned, that I’m no longer the wonderfully perfect, me, I once was, well at least, I was in my own mind. There is something about living in a continually diminishing body, that is totally impossible to accept, we, aren’t, who, we, once, were. Spell it out, how every you want to, but it still reads the same way, we’re, now, totally, useless, beyond existing. OK, I’m being harsh, but I am sure you get the point. I used to have this silently reassuring part to me, that was holding on to the day when I wouldn’t just learn this fact, and that I would accept it. 30 years on, I haven’t. Yes, I know that there is totally no point in my sitting down with skeins of silk and test tubes of seed pearls, I’m never going to make an embroidery or even a much simpler tapestry again, but all I want to be able to do, is the simplest, of everyday tasks, and be me. The frustration of illness is never the big things, it is those small things that have everyone running to your aid, shouting “Don’t worry, I’ll do that for you”. I know you can do it, any idiot can do it, just not this one.
As you know by now, I am a huge fan of logic, but no matter how highly I prize it, there is one thing that logic just never seems to make sense of, our inability to adapt to new forms of ourselves. Logic says you are who you are. Yet logic also says you have to adapt, to every stage of your illness. What logic doesn’t tell you, is just how exactly you manage such a things. I can coldly sit here and without a single problem, admit all the things my health has done to me, all the skills, and even knowledge that it has stolen or stood on its head. I admit freely that I can no longer climb a ladder, or even walk down a flight of stairs. But, when it comes the exact second in life, when I find myself yet again trying to do something I can’t, my brain never reminds me. It just sits there laughing and saying, “Yes, you go ahead and try that, I’m just waiting, until you have, then I’ll remind you, you, can’t, do, that, any, longer”. My brain has been conspiring against me for years, so why would yesterday, or even today be any different. I remember one day receiving a phone call from an ex of mine. He was calling to say, he was on his way down south, as his grandmother had had an accident. She had decided that she wanted to wash her feet and had headed into the bathroom, and tried to wash them in the hand basin, something apparently, she had done all her life. As she had lifted her foot and was about to put it in the water, she fell, luckily, only breaking her arm. I remember his saying “Stupid old woman! When is she going to remember she is 80.” I even admit, to thinking something similar at the time, yet now, I totally understand. I don’t think, we ever see ourselves, as anything short of perfect, well not when we are in those good moments.
When I had that moment; that blistering idea of what I was going to write about today; I was feeling good; I had no reason to even think; that less than half an hour later; I wouldn’t have the slightest idea, what that thought had been. My brain was quietly laughing at me and I carried on with what I was doing, without the slightest concern that I’d forget it. If I had switched on the logical side of my brain, I would have noted it down, but that is, of course, firstly reliant on the fact, that I would have remembered to switch on anything. I am sure that my ex’s grandmother probably thought, “Stupid old woman!”, as she hit the floor. She, like me, and I suspect millions of others, both aging and chronically ill, in our good moments, simply don’t see a big red sign in front of us, there are no warnings of what is going to happen next. We blindly continue, just as we would have five, ten, twenty years ago, as inside, we are still that person, we were then. It would be wonderful if logic really did have control over our minds, but unfortunately, that would make us robots, not human. Humans aren’t logical, we just like to pretend that we are. We are emotional, single-minded and mentally solitary creatures. Robots share data, never forget, never make a mistake and most of all, never have accidents, well they wouldn’t, if they were programmed by robots, not man. We the long term chronically ill are the perfectly, imperfect. With more flaws than we ever had perfections, but we just don’t see it, or even, remember those facts, at the second they are needed.
You could say, that, that, is indicative of our health, that it is a sign that we need taking care off, for our own protection, just in case, we do something stupid. But first, just think about it, how many stupid things do we, ALL do each day? How many times do you put yourselves in danger? Dash across the road, rather than wait for that truck to pass. Jump up two steps at a time, rather than putting your foot carefully on the run. So, you could, just say, that it is, in fact, indicative, of being human. Granted, we are a somewhat more flawed human, but still human. Yes, we will do stupid things, burn our hands when we’re cooking. Forget to go to the loo until it’s almost too late. Fall over things, or more frequently nothing. Forget to do things, including the obvious, like eating. Chock on our own saliva and try to do the things we’ve been taught to avoid it. We are a total mess, but show me the human who isn’t. Before you wrap us in cotton wool, can you be totally sure you did nothing just as stupid yourself today. How many things happened, where you look around, in the hope that no one else saw? Exactly when did you remember that task your boss wanted to be done, but you’d forgotten? How often do you get lost in a song, only to find yourself singing out loud and your colleges are staring at you? Is it really that long ago, that you last tripped over a paving stone, walked into an unseen box, or obstacle? Are you really that different from me? Do you need care?
So OK, I’m being simplistic, but also the truth seen from our eyes. We’re slowly diminishing, deteriorating and fraying at the seams, but we still manage. We might get frustrated, even angry occasionally, but so would you if your body conspired against you at every turn. In general, we are harmless, even the damage we do to ourselves, is nothing, the odd burn, bruise or cut, so what? No, we don’t remember things. Yes, we also forget almost everything of importance. No, we won’t use that gizmo, the latest app or whatever they’re called now, because we’re still us, we don’t want to be robots, nor do we need one. Maybe, just maybe, we’re content in our muddled, irregular lives. Possibly, we don’t mind that much, what we forget, or remember as life still goes on. And yes, I have gone round in so many circles, that I’m reasonably sure that by now you a little lost. It’s a good game, it called my life, and despite all it’s problems, I love it.
Please read my blog from 2 years ago today – 17/11/2015 – Control or not
I guess there is now a fact in my life that won’t change, I will never be able to stay awake past 9pm again. It’s a small thing on the surface and a really trivial thing too, but the things that get to us usually are. I used to love……
I WOULD LIKE TO MAKE THOUSANDS OF COPIES OF YOUR POST TODAY. I AM SO TIRED OF BEING JUDGED, CRITICIZED AND PEOPLE ASSUMING THEY KNOW ME AND THEIR WAY IS THE RIGHT WAY; MY WAY, MY BODY, MY LIFE. I’D SHOVE THOSE COPIES OF YOUR POST (PICK A PLACE).WHEN DID PEOPLE BECOME SO HATEFUL????????
Excellent piece of writing 🙂