December 12, 2006

New Poem plus...


“What are you looking for [on the moon]? We don’t want to go where there is nothing to eat or drink...On earth there are women and money. Life is good.” from Burkina Faso, a citizen on lunar exploration.

“We had ice mountains once.
Always fresh water to irrigate our fields.
Now the ice is nearly gone.
Our soil blows away. The desert grows.
You have been to the moon, the source of the rain.
Can you tell us what is wrong with the weather?
The earth is mysterious.
Life is a mystery.
Do you know why you were born?
The moon is no mystery, just a copper disk,
tangled in some clouds. It hangs behind the little stars.
It has no purpose. It is only there for beauty and for lovers.
We don’t care about beauty until our bellies are full.
If we could eat the moon, we’d ask you to go again, bring it back.
But you can’t eat copper. Even we know that.
When you went to the moon, did you travel past the seven clouds?
Did you wear festive clothing? Or go naked?
Was it hot, like copper over a flame?
How is it you did not fall?
Why did you want to stand on a circle pasted on the sky?
We have higher aspirations:
To meet our husbands or wives.
Find the rain that is lost.
Grow food to feed us and our children.
When we are fed, then we will think about the moon,
how you walked on the moon and you did not fall.”

You know, even though I feel like telling Karen to take the cot next time, or the back seat, I can't. Why? Because Joe will offer to take them instead, and she would let him, she would let him make that sacrifice for her comfort, which comes first, whereas I wouldn't dream of it. I took the cot because I felt I deserved only that, and assumed that I would be expected to use it. Karen on the other hand felt she deserved the bed, and took that as a matter of right, and expectation that she felt she would get it.
I get so angry thinking about this it makes my blood boil, because I know they are in it together against me...and Joe doesn't respect a thing I say, though he knows I know more than Karen, and he as well, especially about ALS. He complains that I don't tell him what I know, but I told him 1) he never asks me for any information, and I don't want to flood him with stuff he is not ready for, any more than the docs at the Clinic do 2) what good would my telling him anything do? He would simply discount it as he always does! I once told Karen something to tell him, because he listens to her and not to me, and lo and behold he did...because it came from her, though it was my information/advice. This hurts my feelings terribly.

But I understand that he needs someone to drive with him in case he needs someone to take over when he gets tired, or to drive him when he can no longer, and he is terrified ot alienating Karen by doing the least thing to affront her, like telling her No he won't pay for a lobster dinner etc or setting ANY limits whatsoever. He feels that insecure with her that he is buying her friendship with expensive restaurants...though he really doesn't want to be spending so much money. I know that even if I asked Karen if she would stop driving him if he asked her not to order $37 meals, and she asked him if he minded, he would say No, he didn't mind, just to keep her happy, because he is so scared of simply telling her the truth, of telling anyone the truth, including me. Though I know for a fact that he does mind. And I suspect that Karen wouldn't dream of not driving him over such a trivial matter, though whether she would actually stop ordering those expensive meals is debatable in the end. I cannot fight him, and I cannot fight his battles for him. I happen also to know that his breathing machine face mask makes his face hurt every morning, and I suggested that he ask for a different mask, since there are many many different ones to try. I said, you've got to ask, Joe or you'll just suffer. And he actually answered, well I guess I'd rather suffer! So that means I have to ask for him, or let him go on hurting, which I can't have him do. But this infuriates me, his utter passivity and his forcing me to do what he refuses to. His favorite books are self-help books, and he must have dozens. But so far as I can see, he hasn't ever helped himself change a thing, except to follow Dr Phil's injunction never to snack, which now he has to break as he can't eat enough at meals to keep his weight up. So much good that did him. But of the important changes, zilch, nada, nothing happened that I can tell. He's still an utter wimp and passive as hell, and while he is an all-time friendly guy, he won't share his true opinions on anything, so it is tantamount to lying when he seems to agree with you, because he could just as well harbor opinions the polar opposite, just not be voicing them in order to avoid controversy, his major aim in life.

Ah, why am I saying all these nasty things about Joe and Karen, well, Karen deserves them at any rate. But Joe? I dunno, why not? I'm not saying anything but the truth. I still adore him, despite his faults, and I tell him so, even when I'm angry with him. It hurts my feelings that he doesn't give me credit for anything I say or do. And his passivity is infuriatingly frustrating. But I guess I've said that all before, so I won't further belabor the point now. Nevertheless, thanks for listening.

Posted by pamwagg at December 12, 2006 04:30 PM


Dear Pam,

I think you should rant whenever you feel like it, especially about Joe and Karen. You may feel a bit disloyal but I think it's healthy. You need to be able to express your true feelings and your blog is a great place for it and well, we all care about you. You are a very honest person and now you're in a position where you're sort of not allowed to be honest. That's got to hurt. And Joe should TELL you that he appreciates you and all that you do for him. You are such a good friend. Karen does sound like a pain in the butt and Joe for all his geniality (right word?) does sound too passive. So unfortunately you're stuck in the middle (or in the back seat and on the cot). A while back I gave you a support website for ALS sufferers and loved ones (which I have misplaced). Does that help? Do they have any forums? There must be many people in similar situations trying to take care of a loved one. It would be good to find an online friend among them, someone who can understand more deeply than those of us here who have no experience with it. You deserve the support Pam. It's not just Joe who needs a support network, it's you. The blog (and the poetry!) is great but you need even more than that especially as Joe's condition declines and he becomes more dependent on you. So start looking around and making more connections in your community and on line. You have to look after yourself first, that's the best way to help Joe...besides you're way worth it (a classic).

Posted by: Kate K. at December 12, 2006 08:12 PM

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