It shouldn’t be this way

My brain left the building yesterday, without a bye nor leave, just gone. There I was, just sat here staring at the contents of the bookshelves beside me, all devoid of books, clearly, as I arranged them. No books, just crystal. Brain or not, I sit often just enjoying each and every piece, such beauty has to be enjoyed. But yesterday, I wasn’t seeing any of it. I was trying not to remember what I was going to do next, just trying to remember what I was doing at all. I often feel blank, but this was so stark that I was sat there feeling numb and not even hearing my constant companion the TV. I missed the bulk of the program I had been waiting to watch, at least there was one positive, it was recorded. Ask anyone with MS or Fibro, brain freeze just like its cousin the fog can be somewhat disturbing, there is something unearthly about finding your entire brain has left you, deserted and alone. In fact, it is worse than alone, because you can’t even find yourself in there. It’s so odd, a bit like you have been severed from existence and there is nothing, other than that, a vast nothing. On the good side, they don’t last long, but when you do come out of them, finding where you are and what is happening around you can take a little time. It’s in some ways like falling asleep and waking again, as time has passed, but nothing, not even a thought, has actually happened, yet still you know it has.

That is the very reason that I developed a spreadsheet to keep me from going wrong and from feeling too lost. I know, it might sound somewhat extreme, living your life by a spreadsheet, but it works and gives me the reassurance I often need. Years ago, it was just a routine, things done at the same time every day, but as my memory was failing me more and more, I did exactly what an operations manager does, I built a work system. A spreadsheet that contained the process that took me from getting up, right through to Adam coming home and being here to keep me right. At first, it had timings, goals, and daily plans. Everything laid out, step-by-step so that it could be checked, double checked and ticked off when completed correctly. It was rigid, disciplined and accurate, but most of all it made me feel secure. I was living my life, just as I had worked. I know it wouldn’t work for most people, to be honest, it only worked for me for a few years, before my health made me rethink it.

From that point on, every few months, I had to keep tweaking it, adjusting it here and there, allowing for my diminishing brain and energy. Reducing over and over everything that was on it and everything that I was able to once do with ease, into exactly the same amount of time, but it kept growing less and less. That was and is an incredibly painful process and the downfall of using a spreadsheet to run your life. It was the constant proof of what I knew was happening, but there it was in solid form in front of me, I was losing the capability to do at all, what just a short while ago, I could do with ease. Every time I rebuilt it, I allowed time to just play a game, do nothing of importance, enough time to relax, after all I was no longer working. When eventually, I had to remove the timings and bring it down to nothing more than a short list of just what had to be done, when I was up to it and that hurt even more. I have lived to that short list now for over a year and so far, I can still do it, but that time I once had just to sit and play games is almost gone again.

I know that my health is progressively getting worse, but in reality, I do very little, it just seems to be taking more and more time just to do it. Yesterday, I opened one of my spreadsheets from three years ago, when I started to blog. My output at that time now looks phenomenal and totally impossible for me today. My daily workload, if you like, has been ripped apart and reduced to about 30% of what it once was. My days seem on the surface to be just as regimented, but I know that it’s totally haphazard. Every day, less happens than is planned and more often or not, I am pushed to the minute just to get it all done, when it should be a walk in the park. As I am slowing down, taking more time to do the same task, somehow I feel as though I am actually diminishing myself. Yet, I kid myself from time to time, that if I just applied myself, surely I could do all this faster, better and more efficiently. Then my brain vanishes and with it, my day. Once more I am staring at my spreadsheet for guidance and finding little, just a list of words, telling me what I have and haven’t done yet. At that second, I wish the timings were there, as if I could just see them, I would know how long I have been staring at a shelf and how long it will take me to catch up.

There is no way that I am going to make the mistake of applying timeslots again. I can’t manage them, they just put unneeded pressure on me, something that I don’t need. But when you are that lost, you want something, anything, that will give me a shoehorn back into reality. Sometimes, reality is more important than anything else, especially when you fear you are losing your grip on it. Brains are scary things. I once thought that the scariest thing that could happen to your brain was surgery, it isn’t. Finding that it doesn’t work, is even more scary. I remember a post I wrote a long time ago, were I was being wishful over the possibility that losing your memory might not be as bad as I thought. I had this wonderful idea, that logically if you can’t remember something, what did it matter as you wouldn’t know what was missing. It’s nothing like that. You know. You know every single thing that is missing. You know, you can see and feel the gaps, just as clearly as you hear the words that fall off the end of your sentences. You know. You know that something had to have been there between one month and the next, something must have happened, something should be there. You know. You know, that each memory that lines up in front of you, that people and names don’t match the faces you remember, if their faces are there at all. You know. You know it all and there isn’t a trick, or mechanism, or prompts, or a system that can bring it back right there, right now, when you need it.

There isn’t even a spreadsheet, diary, video or photo album that can save you from those voids. As for all the things that are missing alone, you would need a library of everything that you ever did, saw, read or watched. A book for every breath and what that breath tasted like, felt, achieved and meant. One for every person you pass in the street, thinking that you never even saw them, but without knowing, their image should there, your analysis of their clothes, their hair and who they were as their life touched ours and changed it. Without them and all the others, who are we now? Those books would fill a library bigger than our imagination and we’ed need another for that as well. Void after void, felt, seen and oddly understood, but hated. Nothing prepares us and nothing can save us, our brain isn’t there. Well, at least not the one we knew that we built, this illness is stealing it microcell by microcell, whilst laughing at us as it goes and for an extra giggle, just occasionally it returns one, but not in always the right place. It doesn’t matter how long we stare at the unseen or grope our way through the fog, we usually only find, what we’re not looking for. We can scream inside in desperation, something I frequently do, as it’s a pain that not even morphine can ease.

You pray almost daily that those you love are blind, that they don’t see your pain or notice your voids. Maybe with luck, they don’t notice your changing personality. The chipping away at your vocabulary, the dumbing down of the subjects, or the constant repeating of what you said not long ago, but have forgotten. It’s bad enough that physically you can’t hide any longer the effects of invisibility, but for your brain to demolished by the same unseen force, is one step too far. It’s just a brain, but your brain, it’s your past, your present and your future, it’s you. One more void, one more space, one more day where the simple acts of life have been left incomplete. It’s easy for those outside, to say don’t worry, it doesn’t matter, but it does. Everything matters, when that everything is yours, and that everything is you.

I can’t fix it, not today, not tomorrow. Not even the most skilled and perfect spreadsheet will make it better. Acceptance, is hard and not acceptable in any way. I know that it will eventually win, I don’t need to be a doctor to know that, it’s just the way it is. Knowing that doesn’t change a thing. It won’t stop me from working out new systems, scrabbling to find what will last for the next year, six months or even just a month. There is always a way through, it’s just a matter of finding it. Unfortunately, we all have to find it alone, as we are the only ones who can. Brains are funny things, annoying things, impossible things, but a thing we can’t live without. This morning, I woke with a wish to have a day without a void. That desire was smashed before I even left the bedroom, I forgot to put on my dressing gown and was sitting on it. Smashed again as I entered the bathroom and for no reason I could find, I turned the light on in a room where before I blinded myself, I could see clearly. Not even five minutes had passed from that wish being made and twice already it had been broken. I guess, that wish will never be answered and it shows how stupid my brain is, what did it expect when you ask for the impossible.

Please read my blog from 2 years ago today – 07/10/2013 – It’s not my fault

With a weekend slept away and as seems to be the norm these days, not quite making it ever to the alarm clock, thanks to my bladder demanding attention. Clearly that is the factor that would stop me from ever sleeping 24 hours right round, it wouldn’t….