January 02, 2008

Happy New Year 2008 - Update and a new poem

Finally, the website is up and running again and I can pen my entries once more! Apparently my most recent one, from mid-December, was lost, but never mind. Probably it is better that way, for all I know or remember of what I wrote.

How is everyone? I hope all had a fine and peaceful holiday -- whichever one(s) you celebrated -- and that January 2008 opens to find you hopeful and optimistic about the new year. Yes, I can't help but remain pessimistic to the max about certain things to do with the earth at large, but in the small world of my personal life, things are looking good: Lynn, while in a general decline, has rallied a bit, gained some weight under the influence of her newest medication, and seems to be failing less rapidly. Joe, who is losing ground steadily himself, due to the underlying progressive illness of ALS, is nonetheless so much in good spirits that it is hard to say that he is anything but very well. His biggest problem at the moment seems to be that he has finally decided he wants to do something about...well, everything now. And now we cannot tackle them all. We had tried to interest him in doing something about each of them before now, before they were critical, but no, he refused. Now that he wants and needs them, unfortunately there will be a lag time, and he will have to go without. I warned him not to do it this way...I cannot help matters now. I was working on the speech generating device months ago, as you know, when he decided not to accept it and pulled the plug. Now that he wants it...Well, I hate to say it, Joe, but it isn't gonna happen overnight this time. People went out of their way for you and got their efforts shoved in their faces. Ditto the internet and a tutor, or the privately-bought fully fitted and adapted vent-ready wheelchair. It can't all be done at once, not even if you pay Karen to work full-time; she already works full-time, practically, whether you pay her or not.

Lord, I love Joe, but he is so frustrating. I think it is partly the Asperger's syndrome, which no one has ever officially diagnosed or treated. I think if they had or would, it would be better, because then we could discuss and better understand where he is coming from. As it is, Joe seizes upon certain things and becomes extremely rigid and obsessed, has various subjects upon which he gets stuck -- finances, for one. Any financial turmoil immediately sends him into a tailspin. He can get fixated on a thought or subject, sometimes to his benefit if he is inventing something, but not always, for example if he is ruminating about a perceived injustice done him so minor it would be better forgotten. He explains that his “schizophrenic illness is such that he analyzes everything with a "paranoid eye," which is to say, keenly and observantly and with an eye for every detail and with mindfulness on whatever "theme" he is pursuing that day. But I wonder how much of this isn’t actually Asperger’s attention to detail and obsessiveness in service of his schizophrenia...Agh, who is to say? but it sure would be helpful if I were not the only person who were thinking this way.

The point about all this is that while I was discussing the ERICA eye gaze communication system with him, Joe may have been concerned about some other, different or minor but to him critical aspect of the system, stuck on it, stuck there, unable to reconcile himself to it, without my knowing it (because he cannot speak and also because he does not tell people...). But if I knew it were Asperger's, I would not get angry with him, because I'd understand that it really is not deliberate at all, just a symptom of his condition, an inability inborn in him. Right now, all I know is that 1) he pulled the plug on the system right in the middle, 2) gave no explanation 3) chose no alternate method but the spelling board, leaving himself open to the communication gap that he will soon find himself in. As a result, I'm left feeling frustrated and sympathetic and panicky, because for all my frustration, I do NOT want to see Joe unable to communicate, and want to get that ERICA system to him ASAP no matter what it takes...But I fear I will not be able to, or that he will not use it if I do, because it involves a computer screen and using his eyes like a mouse. But what the hell else is he gonna do? If he can't use his arms and hands soon, how else will he communicate, if he can't speak? He will need the computer, he will have to. That will be essential, no matter what method he uses to move the mouse...

Who else is in my life? You know who...Karen. She drives me crazy, as usual. I think the worst times are when I am with her and some other person, ie any three- or foursome. THAT is when she is most loathesome to me and when I feel most snappy towards her. I feel like she is always jumping on me, or correcting me or explaining things to me like I'm a four year old. Just yesterday, when we were all at Joe’s for NYD, Joe was telling me something he remembered about high school, and I said that he had the best memory of anyone I ever met. He said that what he learned in HS was simply interlocked with everything else, and therefore never forgotten (unlike in my case, where everything has fallen by the wayside!). I then said, I believe you must remember or think in a different way from most people...He said, I think in patterns. Me: What sort of patterns, what do you mean? Suddenly Karen, and Gary both jumped in, telling me what he meant, as if they knew exactly what he was talking about, in words that made no particular sense to me. I felt like a fool, as if it were something obvious and very simple that I could not understand. But on the way home, sitting in back like the child in the family, since Karen has to sit in front with her arthritic legs and Gary drives, I realized that NEITHER of them knew what he meant at all. How could they?! They could not know Joe’s thoughts or read his mind. Who did they think they were, telling me they knew what Joe was thinking? And...I said all this outloud and angrily, and of course was corrected, told that wasn't what they'd said at all. But it was. It was.

That is the problem with being with Karen in a group of others, especially around Joe. She is domineering and oppressive. Aggressive, particularly when it comes to me. Now that Joe has hired her to drive me to see him 2X a week, I am going to insist that she NOT accompany me to his room, but wait for me elsewhere, that this be a professional arrangement, that it is MY visit and she is NOT to come into see Joe while I am there. ALSO, I am to be taken there and straight home, no stopping for errands of hers or lunch or anything else. Either that, or I tell Joe and he docks her pay...But enough of my vitriol about Karen: tonight we are doing fine together. Tonight no one else is around and she is treating me okay. Tonight we are friends and I am not upset with her. So I will leave the subject on that note.

And I? How am I doing? Well, I wrote a poem last night, and I am making sterling silver wire jewelry like it is going out of style (I dunno that 'twas ever in. So there...). But seriously, I am developing my own style of jewelry, and it is more wire than beads at the moment. I shall try to put up a picture on the blog soon, if I can get one that shows a necklace or bracelet properly.

Paranoia still shows itself in my daily life, with Karen of course, and at the store and in the car, while driving. But my home – my apartment – is my castle and I feel relatively secure and protected there. One great improvement is that except for brief snatches of mumbled conversation or music, coming as it were from a distant party in another room, I have not heard the bad voices in several weeks. This does not include the little people, naturally, who appear frequently as always, and continue to amuse, irritate, and entertain me. Just last night they resided in my silver wire and argued about... something to do with the religion or ethnicity of the beads? Something utterly ridiculous, but at the time accepted as fully as serious as they claimed it to be.

One final note, and it is a negative one, a downer for me. Due to being on a mere 2.5mg of Zyprexa I have gained substantial weight, a noticeable amount, enough to make me feel fat and be angry with myself, if not enough for others to agree. I am trying to lose it, trying to cut down on what I eat and how often and how much, but if you take some of these drugs, and especially Zyprexa you will understand how astonishingly difficult this is. It may be that one can cut out the ice cream (I never touch it) or, what do I eat that I should not? Turkey kielbasa? Okay, naan bread, from India, in that it is starchy carbs...I could cut that out, and I have. But always something is put in its place, because the drug makes you crave the calories or at least the substitute food. And not simply the bulk but the substance of it, the “meat” of it, if you get what I am talking about. Yes, essentially the equivalence in calories.

I did cut out the bread, but now I snack on, you got it, turkey kielbasa, because I bought either of them with a rain check, two-for-the-price-of-one, and it is low calorie and needs no cooking, just microwave heating and it is ready to eat. Otherwise, it is coffee (with half and half) and yogurt with cereal, and fruits and veggies almost exclusively...Yes, I do eat more than I used to. I have to, I cannot stop the drug-induced “food-seeking behavior.” It is no mystery to me why I have gained so much weight! It is simply a misery to me...And I swear I will/must/have to do something about it, or I will not be able to continue taking the drug, which again has proved itself to be a very mixed blessing. I always says I’ll take any blessing, large, small, mixed or in disguise, but of course, that is not true in this case. In this case, the one side effect that to another might be only a botheration, to use a cutesy colloquialism, to me is the deal-breaker.

Wish me luck, as I will need it, and more.

I will print the poem below, but a bit of explanation might be in order as it may be less “accessible” than my usual. This piece is about the guy with leukemia who in the process of trying to cure his own illness with radio waves thought he had discovered how to “burn salt water” – an “oceanic energy” supply – but who had actually only rediscovered electrolysis -- the separation of water’s H2 from its O -- and ignited the hydrogen. Maybe all that is clear from the poem in the first place...I always worry too much, but just in case! BD


Blood-sick, pale and trying for the home cure,
electromagnetic frequencies zapping cancer his best hope,
he made instead salt water burn and hometown headlines,
a dream of oceanic energy, elemental supply
pure and clear as H2O, come true. That was all. It came to nothing,
the cancer cure, the small insistent flame. But I imagine
the match-brief moment, a startle perhaps, the slow turn
to his partner or his wife, a crinkled smile like the rapid bloom
of a crystal flower...Maybe, maybe? So if not cancer cure,
then climate cure, energy for the ages in open sea abundance,
his name in history if all he has to leave behind.
--------------------------------------------------------No, it was only
water’s old division, an alchemy now well-understood:
electrolysis. Radio waves cleft two component elements:
hydrogen for its perfect burning, oxygen to feed the flames.

Posted by pamwagg at January 2, 2008 07:34 PM | TrackBack


I just read about you on our list UK Survivors and got interested so came here and have read your blog. You have a fascinating way of writing that seems to get to the heart of matters. I will certainly be reading more.
We have a new group called Creative Cafe where members have their own webpage to put up photos, videos, music, write blogs. They can also start and join in groups and discussions. We also have a linked Salesrooms for members to sell their art and handmade goods.
We are set up and run by people with mental health and other disabilities and say
Don't Let Disability Mean Inequality.
Membership is free and open to those with disabilities and those without.
Anyway I wonder if you would be interested in joining us?
We are at
I will definitely be back to read more of your great writing. Thanks a lot.
Take Care and Bye for Now

Posted by: Jill Goble at January 11, 2008 02:53 PM

I believe that I am one of the few who can truly understand the unequivocal courage it took for you to reintroduce Zyprexa into your "medicinal melange". I know the siren song it sings to you."Take me. I will clarify your thinking. You will once again enjoy the pleasures of reading and writing with renewed inspiration." I also know full well the horror you feel at the very thought of gaining even an ounce. How I admire you, my friend. Whatever you decide to do regarding Zyprexa, you have once again proved to me that no one else I know can possibly hold a candle to you. Your persistence, your talent, your strength, your refusal surrender to your illness,(I could go on forever) will ever be the standard for which I strive and which challenges me to go on despite my wishes to the contrary. Hold that magnificent head high, Pamela. You are an inspiration to anyone who listens to your voice, crying out in the wilderness.

Yet again, you humble me. Lovingly, T3

Posted by: Paula Kirkpatrick at January 2, 2008 10:16 PM

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