I know that in the last couple of months I have returned again and again to this subject, but it is one that is growing in it’s importance to me and as I always presume that what I find hard, well will be what others out there also find hard, so I make no excuse for returning here again and again. When your mind doesn’t hold onto a thought long enough to make that transition from mind to mouth or mind to typed, it gets harder and harder to actually feel as thought you can possibly be part of the world. I know that I am far from being the only person who through no fault of their own, just the fault of illness, now finding it harder and harder to actually feel in control of my own life. Memory is a strange thing, especially when you think about all the different levels of it that we use on a daily bases. At it’s most basic we use it at a lighting speed when we are talking, there should be a seamless line, no real thought, just words flowing out of our mouths and totally in our control without us even knowing it. We learn as a child to remove those hesitations, the umh’s and er’s, the pauses that other take as some kind of instant proof that we don’t know what we are talking about. They betray us as not having confidence, not really being in control or having the depth of knowledge and the older we get the less acceptable they become. Imagine going for a job interview and sitting there slurring your words or stuttering through your sentences, stalling in mid flow and being left hanging in the air, with no way of proving you are the one they should employ. Now imagine feeling like that every time you open your mouth.
Often it is of no importance, but there are times when Adam and I can be talking and he will leave the room to fetch a glass of coke, gone for no more than 30 seconds, on returning he wants to continue where we left our conversation, but I can’t remember even the slightest part of it, his first sentence leaves me sitting lost with no idea what he is talking about at all. I know at one point in my life I was able to speak fluently and fast enough to have worked as a DJ full time in pubs, clubs and local radio, I admit that you don’t normally talk in a club, but you have to have a brain that worked 5 or 6 tracks ahead, and to know without being able to see a record clearly, that just by the groves alone that you have the right one. You don’t get a job on radio if you aren’t fast witted or able to have a conversation with an invisible audience, my once bright and shiny brain had left the building, what I have left is something even I don’t recognise as me. I guess that is the real problem, you can do so much to make life with pain easier, to adjust to lack of mobility or dexterity. You can get round most of the horrors that illness throw at you, millions have been spent on creating the gadgets and gizmo’s that make life more bearable and easier to manage. You are supplied with the tools to keep you as much as possible as independent but when it comes to your mind, you are on your own. There are no easy answers, despite all the things they try to tell you will help, try as they might to arm you with tricks to help you get through the day, all those coping mechanisms, the coaching on how to talk and how to stay in control, all fail as time goes on.
No matter what you set up to help you get through your life in a hope that as time goes on and less and less of your mind is working, you will still be able to access all those nooks and crannies. To just be able to be sure that that memory of childhood is real, not confused with something that happened to someone else, or even seen on TV. The less you can trust you own mind, the more scary the world becomes, all to often you find yourself sitting scared to do anything because you just know that your mind is going to fail you. Nothing is simple not even going to fetch a drink, or going to the loo, they become a lottery as to what you actually do once you are on your feet and I do mean a lottery. Sometimes I find myself rambling, talking just to try and prove I am still me, to prove to myself that my mind works but driving Adam up the wall when I keep stopping and starting, lost for the next word often so badly I just stop where I am, giving up on it and starting to talk about something else because I am determined to keep going, determined to find that mind I once had. I can’t imagine how frustrating Adam finds it and to often without meaning to I here that sigh that tells me once more he has had enough of my not complementing what I am trying to say. I know he doesn’t mean any harm by it and when questioned as I have done a couple of times, he changes it as being for some other reason, if so his timing is amazingly queued up with my speech. I don’t think that anyone who hasn’t been through slowly loosing there mind, memory and brain can fully understand how frightening the whole thing becomes. Loosing a limb was frightening, but nothing in comparison.
Those of you reading I know will say well she writes well enough, how can this come from the mind she describes, I don’t really know other than the fact that unlike the rest of my life, I can rerun it, replay over and over until it is right. Maybe that is why I need to write so much as spilling out these words are the only place that I know I can’t get totally wrong, as long as I have enough time to just go over it again, or even again, I can at the very least give an illusion that I am still that person from years ago. Yesterday I wrote of how it felt to loose your friends, well the closest friend you will ever have is yourself and just as I said yesterday even knowing and liking yourself takes work, but no matter how much work I put in, it still does what it wants and it still keeps letting me down, how do you stay friends with someone who does nothing but disappoint you. Once my greatest friend, now at times a total stranger.