December 07, 2006

Traditional Poem, plus...


“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


Hello Pam,

I LOVED your poem "The Misanthrope Speaks." It was classical and beautiful. I'm writing, at once, in response to two or three of your posts. I've included in the URL: box, above, my website address, as you had asked for your loyal followers to chime in with our websites. If you are able to, I'd like you to post it in a comment so that everyone else can tootle on over.

While I talk about living with SZ, I tend to veer more into lifestyle and coping techniques. It is a departure from the focus on symptoms and on the hell. I welcome everyone's comments, as I have been blogging in isolation since my website went live in October.

Like you, Pam, I have written a memoir. It's called "Left of the Dial," and I almost have an agent I have visited your Weblog on nearly every day, and I've seen your progress. Kudos!

Alas, I agree with whoever spoke up about the situation with Joe. I feel it isn't the healthiest for you to take on all the burden. You appear to have a natural mothering instinct, and that's great. However, you also have a history of people taking advantage of you. I know Joe wouldn't do that, and if he did, it wouldn't be intentional. But it seems other people are placing you in the role of his caregiver.

To be honest, I don't balance my checkbook. Though I could do it, I simply use a budget, and only spend what I'm paid, no more, so I'm never overdrawn. But for you to assume the role of Joe's financial caregiver is a bigger deal than just what I do every two weeks.

Above all, find time for yourself. Your poetry is one of the bright lights in my life. I surely do want to buy a book of your poems when you publish it. Do you subscribe to Poets & Writers magazine? In each issue, they list poetry contests, awards, and literary journal submission info.

I wish Joe the best of health, and I wish you the best of health and fortune, too. I became sick when my grandpa was in a coma, hooked up to a respirator in the hospital. That was my breaking point.

So I want to say that your work and your literature and your recovery has indeed inspired me. We need more people to speak up and out about what it's like to live with the schizophrenia.

Good luck with everything!


Posted by: Christina Bruni at December 8, 2006 07:11 PM

Kate: I dunno why your comment got lost. Yaya complains of that happening to her all the time. I wonder if you mentioned a resident of the white house (I dare not capitalize it) and the program thinks that is too controversial...I noticed that Yaya did in one of her posts that was rejected...That might be one thing that could be considered, by the program, as questionable. Otherwise, I'm stumped and I suggest you ask Brian immediately what is going on!

Thanks, Debbie, for your vote of confidence...Maybe I could learn to balance a checkbook. The problem with anything social, like going to the store for Joe, is that I get paranoid every time, and though I try to catch it later, never do at the time, and so suffer terribly through the task and dread doing it.

Paula, I do take time for myself and have had plenty up till now. Joe has been fully independent till now in fact. It is only now that he is beginning to need more help than before and that we need to start planning how and what to do for him. It would be great if we had more people involved...So the burden wouldn't just be on me and Karen and I might ask Karen about his other friends, if they could get iinvolved, at least peripherally, to drive Joe occasionally and so forth. You're right, it shouldn't all be on my head, and in fact I highly resent it when Karen says to Joe, Oh we'll do that for you, and then turns to me and says, Pam, when wil YOU be available to do such and such...Meaning that I will be doing it, not her. She suggests that he needs help, but then volunteers me to do it, which I think is unfair and inappropriate, but I dunno how to stop this, since she does it in front of Joe! I'm gonna have to talk to her about it.. Enough for now, but thanks, as always for being my best defender! BD


Posted by: Pamwagg at December 8, 2006 03:00 PM

Dear Pammy,
Your love for your father is so real. For you to write the type of poem that he most enjoys, even though it goes against your personal preference, is proof positive that he is very important to you.
Although Joe is important to you also, I believe that you have done all that is humanly possible to communicate that feeling. When your own feelings do not appear to matter to him, although I know he is under tremendous stress, it's time to rethink your relationship. You cannot take over all the aspects of his life and continue to live your own life without becoming frazzled. If you become too torn and pulled in multiple directions, experience has shown that this is dangerous to your wellbeing. Your first obligation is to try to keep yourself and your SZ in control. Only then can you be of help to anyone. What has happened to Joe is heartbreaking, but you cannot take the chance of "breaking" yourself in your attempts to help him. You have done much already, Pam. Take a deep breath and make some time for yourself.
Much love, T3

Posted by: Paula Kirkpatrick at December 8, 2006 02:23 PM

Pam, a sestina is way more complicated than a checkbook. You may have it within you to do all these things and more. Don't panic! I think writing about these challenges is helpful because when you write you have to analyze what you're writing about, and in so doing, you may conquer its mystery. Best wishes,

Posted by: Debbie at December 8, 2006 02:21 PM

Dear Pam,

I just received this comment when I tried to post: Your comment was denied for questionable content. I have no clue what that's all about I was just trying to offer some support for you and your
situation with Joe. Hang in there!

Posted by: Kate K. at December 8, 2006 11:27 AM

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