I have always believed in the saying that “The first step of any journey is always the hardest”, it’s taken me years to realise just how wrong that statement is, the first step may be hard, but you can be sure there will be many as hard and some even harder along the way. It doesn’t matter how many times I tell myself and others, that I am at ease with what is happening to me, the facts remain the same, it isn’t that easy or that black and white.
I admit that yes those first few days after I had been told what was wrong with me and what I thought I was facing, were hell itself. I still remember sitting for hours just staring into nothingness and feeling more than just numb, but that is so long ago now that it’s happening now feels as far away from my reality as it did then from my dreams. What I didn’t know then and I am only really coming to terms with is that every time you notice a change it all starts over again. That doesn’t mean you spend your life in a start of grief, far from it, as although there is a constant downwards slope, those moments when you notice the slope and they are the moments when life stops for a few hours and you have to readjust. I know that losing my “voice” isn’t something new, all you have to do is read back through my old posts and it appears not once, but several times, but it’s mentioned because there has been a change that isn’t hidden, but is out there in the open, one that Adam knows about just as well as I do. It easy to hide, even from yourself the daily slips, the odd pain or the extra exhaustion, but it isn’t so easy to hide from your own brain making mistakes that a primary school child would never make. I remember writing a few months ago about noticing that I could no long do basic maths if I had more than two single digit numbers to work with, something I still have to do daily as I can’t help not doing stats on everything I do online. Yes, I do still have pages of spreadsheets, full of numbers and names all working together to not just keep me working through my daily routine, but so I don’t make too many horrid mistakes on twitter. I am reminded every day that I can’t do the things I once didn’t even think about, it may have been a long time since I could totally rely on my brain as much as a calculator, but two numbers, well that was to me a huge issue and sign of things to come. I suppose it was only a matter of time before I could no longer even work out time any longer, if I had been totally honest I was aware it too was going, for a long time now I hadn’t been able to trust myself when it came to counting how many hours were between going to bed and getting up, I counted it out on my fingers, but that was maths, the basic of you have two hours to watch TV, how many shows will fit, a nightly question, to go wrong seems bigger.
It is really hard when you come face to face, in a situation where you can’t cover it up as just a mistake, like, it’s now happened three time in a week with a witness, you have no choice but to deal with it. They are those moments when inside you go cold and your brain goes into a numb explosion, time stops and you are face to face with the monster you knew was there, but you had paid no attention to. On the surface, you recover in seconds, but inside time is still stationary and your dying, your spinning around trying to find the pieces that are missing so you can fix it all, but there is nothing there, just a huge void that has been crossed and there is no way back. Life goes on, you perform just as you have always done, yet still inside you are looking downwards into that void and it feels like it’s pulling your very life force down into it and there is no breaking system, but on you go, you get ready for bed, or make your dinner, whatever is right for that time in the day, but your not there doing it, at least not for now. It can take several days to accept, to reorder your expectations of yourself and your abilities, days that every silent moment is spent fixing, gluing and patching, but most of all grieving for yet another part of you that has gone.
It isn’t just that first step, it’s every single step that is anywhere that isn’t the norm. At times they are separated by months, at other just weeks or even days, you don’t notice them all happening at first, but bit by bit they make themselves known, they happen more, or in a bigger grander fashion, while others snap and their there, or there totally gone. We all have our own expectations of ourselves, we know what is us and what’s not, so when someone tries to tell you your being silly or that it doesn’t matter, it just makes you angry, it does matter, it’s you, it’s you that is breaking and vanishing not them. I don’t care for people who say stupid things like you sound fine to me, well do they even know me, where they there with me when I was at my brightest, my biggest and boldest, did they even know of my existence then, so how do they have the right to say how I seem or how I sound, when it comes to me, they know nothing.
I don’t know how others deal with a body and life that has diminished, what I know is I grieve and I move on. I would go as far as to say that it’s a must, you must grieve, you must get angry and do all the questioning and pain required for each of the caverns that lie behind you, then hold your head high again and start walking through this new life, as that is what it is, it a new life with changed boundaries, changed expectations and a changed reality. It doesn’t matter how small the void or how huge it is, whatever it is, it has an impact so changes have to be made, adjustments that compensate and remove the dangers, but you have to be ready to for them to not work and to have backup plans and alternatives lined up to go. I have learned in the last year that there are things that it doesn’t matter how hard I try, how many plans and back up there are, that there are things that have to be handed over to others to deal with. When it comes to my memory, there is nothing that I can do, to make me do things, taking my pills and showering are just the start of the list, I know that. I have tried everything possible to remind me to do things, but something stops it working, for reasons I can’t find the answer to just having a reminder set up that no one but me sees, just doesn’t work. I either totally ignore it, or I forget I ever saw it. I faced facts and handed Adam the job of forcing me to do what I need to, the future clearly holds a list of things that will also have to become his role to ensure they are done. The solution for functional actions are there, but no one can think for me, speak for me or even write for me, each function I am loosing from adding up numbers, to forgetting the next word and stuttering, I am sure would tell the Nuro’s a story of what is happening to my brain as the lesions do their destructive job and probably what will go next. Knowing make no difference, I knew my brain would stop functioning as it once did, I knew speak and memory were in danger but it doesn’t make any of it easier, every step hurts and every step is a new beginning, in a newly shaped world.
Please read my blog from 2 years ago today – 03/11/12 – I’m still here
Within second of my lying down in my bed last night tears started to flood down my cheeks, not trickle, truly flood and in my head I could hear myself screaming “I am still in here”, over and over again. Almost every muscle in my body tensed and it took me a few minutes to get control of myself again, and bring ……….