Sunday and another day to wonder why is Adam awake? It is the weekend but we are actually spending the day time hours of two days in a row, together? I am not complaining in any way, it is in fact really nice to see his sat on the settee with his laptop rather than drowning out the TV with his snoring. I often feel that we somehow manage to go through the weekend seeing less of each other than we doing through the week, we both seem to have a need to sleep during the day, the problem is he sleeps in the morning and I sleep in the afternoon. I seem to shut down somewhat after my nap as well, it is almost as if I don’t really wake up totally and just coast through the few hours between sleep slots. The problem then is that I am finding it harder and harder to actually talk, I’m not imagining it, it is now a real problem. At this time of day although yes there are faults to my talking I do normally still manage to make sense, but later in the day, well my mind seems to shut down, to loose the ability to complete sentences and looses track at the flick on an eyelash. I now seem to spend more time not knowing what I am talking about, so why would I expect Adam to.
We all have problems with memory as these damned conditions get hold of us, some of it is acceptable, even to ourselves, but when it gets to the point you yourself gives up time and time again in the space of a few minutes to say what you want, therefore completing nothing and contributing nothing, well it starts to get hard. To say that I can take days to complete a sentence I started, is actually the truth. It has happened time and time again recently, I start something and forget, then the next evening I manage to say a bit more about what my train of thought was about. But then, well it all vanishes again and it will the the next day or the one after when the final piece will be sparked back into life by something on TV or said by Adam and I manage to hold on to long enough to actually say it. The change in the last few months has been pronominal, I have gone for the odd stutter, the drop off in sentence to it being at times each and ever sentence over the space of an evening. Even sentences actually don’t exist at time, they are just a stilled collection of words that I hope will be understood, why they should be, I don’t know, as I often don’t understand them myself, but I can’t improve on them. At times I even find myself scared of starting to talk, as when the past few hours has contained nothing but disasters, well it gets more and more daunting and pressurised into wanting perfection. The worst part of it has been the speed of the change, it has been so fast that I really do have a fear of not being able to talk coherently in the not to distant future. On the good side I spend almost no time with strangers so I am reasonably sure that Adam will know what I am on about. Even now though he sometimes doesn’t and to many thing end in the same to words, “forget it”, not to surprisingly I never seem to have a problem find those two words, they live poised ready for use constantly.
There is one blessing but a double edge one and that is that Adam is very good about not finishing my words for me all the time. Like anyone though when he is not in the best of moods he because just as frustrated by it as I do, still he doesn’t complete for me, but what he does strangle hurts more and I know is totally unmeant, he huffs. We actually spoke about this a few days ago so I am not writing this in the hope he reads it, I am writing it for the other who may read. There is something about the vocalisation of how you feel coming from another, that really makes it worse. Even an action that may not be connected like rubbing his brow as though it is all giving him a headache, are things that add a feeling that I really am being a nuisance, rather than offering interesting conversation and companionship. Once you have a problem like this you yourself become heightened into noticing every small reaction that is there, intended or not. You frantically start watching body language, picking up the tiniest thing as their importance is suddenly unbelievable. I suppose like anyone else who can’t always talk clearly, we are searching for both reassurance that we are being understood and that things aren’t really as bad as we think they are. We both need to make allowances for the other as every couple does, but this illness has made that for me a lot harder. No matter how hard I try not to pile things onto Adam, I am humans and I do it, just as he is human and has things in his mind and day that are totally unconnected to me and my ramblings.
The scarey part of this is that in a funny way we are just at the beginning of this all. The beginning isn’t getting a diagnosis, or dealing with those silly little symptoms you had back then, that wasn’t the beginning that was just playing around at the edges of it. The beginning really appears when you have to start relieving on your partner. When you still have some independence in your life is still yours, but when that independence start to vanish, so does everything else about you. The true beginning of illness is that moment when you just can’t do something for yourself, I don’t mean opening a bottle or something, but when you don’t just need the person you love, because you love them, but you need them to help you live. That first second where their actions are required for normality to continue, that is when illness really begins and it builds from there on. As close as humans are able to become, we were never really designed to be symbiotic, none of us have that kind of patience, no matter how hard we try. So here is another new challenge, that ‘I’ have to deal with, to learn to accept my mad brain, but harder still, to not look at or read into, anything that I pick up in response to it.