More From Yesterday

I wrote this yesterday in response to a comment about yesterday's blog post. Yesterday's post has a lot of frustration behind it, frustration that mostly I deal with. Sometimes it gets to be too much, so it squirts out sideways. I am so tired of living with ALS, yet I cannot bring myself to end my life. So here I am, once again frustrated.

Most of the upset and anger is around organization. When I ask for things to be done a specific way, I generally have a good reason, although it may be below the conciousness of active discussion; I probably feel it more than know it. If it seems like I am micro-managing, what I am really doing is trying to keep the pain and exhaustion, the frustration, out of my life. Sometimes what seems to others to be me micro-managing is really me trying to have at least a modicum of control over my own life. I've lost it almost everywhere else. Micro-managing is not what I am doing; what I am doing is trying to have impact in my own life, and trying to keep my distress to a minimum.

There are a lot of things where it doesn't matter that much to me how it is done, a lot of things where I don't give a rat's ass as to the result. These fall into two categories; things I have never really worried about, and things where I have lost so much ability that any concern on my part is irrelevant. Then there are the things that matter, either for emotional reasons, or for physical reasons. They are mostly fairly self-evident; the organizational stuff, and the things which make up a part of my personal identity.

Take for example how my laundry is folded. I used to have a way, a method of folding. Then Katherine came along and she started doing it differently. That was fine with me. Then my HCA's added their own twist to the process; no worries. These days I can hardly fold laundry myself. The only thing I worry about is how my pericare towels are folded, and that's only because they have to hang on my M-rail, so I want them folded lengthwise first. I just don't care that much about laundry folding, and I never have.

Next, take the example of how my wine bottles are stored. I like them stored a certain way, so much so that if I see them stored differently, I will re-arrange them to put them in order, a truly non-trivial task for me. Some people think this is just me being fussy, even silly. Some ignore me altogether, just putting them in a box without regard to sorting order. It's not just one person; there are many who think I am micro-managing the bottles. In some ways this might be true, especially for them. 

They just see a bottle as a bottle. I, on the other hand, see the bottle as part of the complete presentation of the wine. I want my bottles consistent for a given batch of wine. I want the labels straight. I want the caps consistent. This really matters to me; it really, really matters. So I sort the bottles with their own types. That way I know how many empties I have of a given type, so that when I bottle, I know what I need, what I have to buy. I also know if I am going to have to suck it up and accept that some won't match.

Now take something like how the dishwasher is loaded. I don't care. I used to care, but now I neither load nor unload the dishwasher. What's interesting to me is how much some other people care about it. I fully understand why they care. They want the dishes clean, something I neither have to worry about nor resolve. If I get a dirty dish, I just put it in the sink. I don't have to wash it, or put it back in the dishwasher. I can't. I have lost so much ability in this regard that my thoughts and needs are no longer relevant.

Finally there are those really difficult situations, the sometimes yes and sometimes no situations. I care about how my food is prepared, but not so much that I am completely unmovable on the subject. It matters to me, yet I can, in most cases, put that aside, be grateful that someone is cooking dinner for me. Sometimes a joke doesn't bother me while other times it can cut right to the bone. I blame this all on my variable and volatile emotional state. 

This is all part of living with ALS, not just for me but for those around me. I regret it. I have limited ability to manage it. I have to live with it. No choice.