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THE MISANTHROPIST SPEAKS
“The nighttime is bright and because of the snow
I think I’ll go walking. It’s walking I know
will clear out the weeds that my troubles have sown.
Trees’ crooked knees and bent elbows are bare,
All white and still, they have nary a care.
I wish I were like them but I do not dare
let go of my troubles or they’ll let go me.
I’d have no companions and where would I be?
No other friends have I; no one knows me.
I could learn to make friends just by being friendly
and kindly and loving. But I do not see
how they’d be more loyal than my anomie.
Lethargy loves me and dullness adores.
Apathy has agape. And furthermore,
talking with friends till dawn I abhor.
No, I’ll stick with Trouble, whatever I find.
I will not be loyal, or loving or kind.
I won’t have a friend, no, but why should I mind?”
My father, a lover of classical poetry, really wanted a rhyming and metered poem -- you know, singsongy, so Here, Dad, this one’s for you.
I was in the throes of agony writing it, trying to be serious and yet write it in rhyme and rhythm. Dunno how well I did. The line with Agape, meaning a kind of divine love (you pronounce the e by the way), must be read very carefully, each syllable has to be pronounced. But it does work if you read it right. Anomie means a state of spiritual apathy and lack of energy, a kind of disaffectedness of the soul.
I made Joe 5 containers of Lemon Sorbet yesterday and gave them to him today. He loved it but was sooo tired it hurt me to see. He seemed to get out of breath just eating one. He has been very very tired recently, and I fear it is due to generalized weakness, his muscles beginning to give out all over rather than one by one. But it could be due to his breathing trouble too, I dunno. Since we are going up to the Clinic on Sunday for his Monday appointment, I suppose we will find out then why he is so fatigued so suddenly. He has even cut down to doing one thing out of the house every other day, whereas before he was doing several things every day, and not very long ago at that!
It just creeps up on you, this illness and its changes. You don’t expect them when they happen, but then they do and you have to be ready to adapt. I think that soon Joe will be unable to drive me to my appointments with Dr O, which he always liked to do but which I think is getting to be too much for him.
We had a bit of a tiff today because of his need to please people, his unwillingness to allow people to have their feelings. I had made him about 12 veggie burgers a couple of weeks ago, my soy invention, because he asked me to, and one day he cooked one too little and ate it. The next day he was ill with a stomachache, which he attributed to the veggie burger. Now, I have eaten plenty without cooking them anywhere near enough and without ill effects. There was, however, a 24 hour virus with GI symptoms going around that had probably gotten him. But he persisted in believing that the veggie burgers caused his stomach problems and handed them back to me, because he wasn’t going to eat them anymore. Well, I had made them with love, just for him, and this hurt my feelings, and I couldn’t help but let it show. He immediately started objecting, telling me over and over that his stomach hurt and that was why he couldn’t eat them, because they made his stomach hurt...I said, Joe, you have to allow me my feelings, that’s all. I feel bad about this and I can’t help it. You don’t need to explain or change it or force me to push my feelings down. You need to allow me to feel what I feel. But he was going on and on about how he just couldn’t eat them. So I got up and left, I couldn’t take it any longer. He wouldn’t listen to me as usual and I really was hurt. I couldn’t stop being hurt just to please him and have him leave me alone. He really needs to learn that other people have a right to feel what they feel and he does not have a right to demand that they swallow their feelings just so he feels better.
But I think he is feeling more than the stomachache he claimed, feelings he wouldn’t talk about or admit to: depression and fear. I think he is scared of losing his voice and depressed about how tired he is. I think the limitations of ALS are getting to him all of a sudden – as all this is happening suddenly – and he is scared of it as well as depressed that it means he has even less stamina than he had with schizophrenia. Just two weeks ago he was doing three things a day and enjoying himself. Now he can barely do one thing out of the house every other day and rest the next. He wants to sleep most of the time and I don’t know how to tell him that it is weakness not sleepiness that he is feeling. Unless it is his breathing that is tiring him, but so far as I know his daytime O2 is close to normal so I’m wondering what we could do to help his fatigue so that he would not be quite so tired. I’d suggest a wheelchair, but he walks just fine. I just don’t know how he could conserve energy –
Well, it seems that my duties will become greater in the coming days and weeks ahead, so my entries here may be fewer or shorter in consequence. I will try to write as often as I can, and I should have most evenings to myself as Joe goes to bed early. But I don’t know how long he will be able to continue to function without a lot more help, which Karen and I will have to give, up to a certain point, and then he’ll need an aide. But even then, my time will not be my own as there will be things we’ll have to do that an aide will not – like dishes and cooking and bills and banking and shopping etc. Frankly, I’m not sure I can do it myself, seeing the difficulties I have in the store already. And as for checking accounts, I don’t even know how to balance a checkbook or how to keep track of checks or what to do with a credit card, how to pay it and so forth. If I am made his financial person, the one who can take care of his finances -- he doesn’t want Karen to do it as he thinks she spends too much money -- I don’t know what I am going to do! And I don’t know how to say, No, I can’t! Who else can do it? Who else will?
Argh! Too much to think about and to do. Never enough time. But poor Joe has that problem in spades, so I won’t feel sorry for myself. I’ll find the time to think and to do; try to find the energy and stamina.
Posted by pamwagg at December 7, 2006 09:00 PM