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Schizophrenia Screening Test |
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NOTE: You can click on any of these pictures to see them close up...
Here is some of my recent jewelry. The fibs come first. Fibula is actually the name of this small pin, and secondarily the name of the thin small bone in the leg, next to the tibia. It is called the fibula because it resembles this sort of pin! Be that as it may, these two pins are my most recent (and are spoken for, I think, though others can be made) and are all sterling silver. The pen is put there to show the relative size. All the following fibulas are about the same size, though they can be much bigger, the size of a long finger, or teensy tiny, too, if one wanted one that small. Mine tend to be 2-3 inches usually. By the way, these are not just safety pins that I string beads on. No, I make these from scratch, from just a piece of plain wire and a couple of beads. Even some of the "spacer" beads are hand made from wire...
Green version -- I wore it today and I think it fell off when I took off my coat and got losted...I can't find it anywhere..DAMN!
Actually, yes, but not jeans denim, Denim Lapis, a rock, a version of Lapis Lazuli, only a greener hued blue, and very much like the denim of blue jeans. In fact, I made this necklace of Lapis and Golden Jade (a serpentine not a true jade) to go with something as casual as jeans. I gave one to Karen, for Christmas, and a nicer one to Dr O, ditto. Both made with sterling silver links and always a homemade clasp.
I made these out of sterling silver "stitches" that I taught myself from a very helpful book about wire work. They look very nice, though the one with the single tear drop is the one I believe nurse S stole, but never mind. In any event, the problem is that I didn't know you have to prepare the wire by sanding the ends of each piece before you make each "stitch" or it will stick on clothing...So alas, these are sticky and catch a bit on my sweaters and less than smooth shirts. I hope to make improved versions as I go along. Meantime, I am sure some relative would be forgiving enough to enjoy getting them! 8D
Victor, the building mechanic, a nice guy with narcolepsy! asked me to make this necklace for him. He wore it on a night out with his sister and friends and they really liked it on him. He was brave, but didn't think so, and simply thought it was cool. He felt completely comfortable, no awkwardness or discomfort in slightest. I really admired that.
Aragonite and Rose Quartz - I made this one to match my Christmas skirt, the long one I found at Goodwill and hemmed myself to mid-calf length. Necklace is really nice, but I had no use for it after that one holiday, alas...
So far this is the necklace I wear most often, because it goes with so many articles of clothing...I guess I wear a fair amount of pink, at least in the summer. It is made of brass however, and would be a much nicer piece if I could have made it of gold-filled wire. But that is mucho mas dinero and more than I can afford at this point! 8D The pink stone I cannot remember, but the green round ones are jade (nephrite) and the "teeth" are shell.
This is made of copper with rather large links and 16 gauge wire. Sturdy. Polishes well with lemon juice or vinegar and salt.
Well, I had a talk with Dr O vis a vis my manuscript and my vacillating back-and-forth decisions to publish and then not to, my wildly and rapidly changing feelings about both the book and myself (hating it and then by extension myself, naturally) and I came to the conclusion that -- Well, it's more complicated than something I myself decided, but basically Dr O told me that instead of trying to figure out whether I was the OTAM or not, whether I was evil and abhorrent to the world, whether my book was lousy because I was fundamentally a lousy person, it was better that I train myself "not to go there." In fact, she said, I should start practicing to tell myself, "I will not pursue that avenue of thinking, it is purposeless and only gets me into trouble...etc" but start myself thinking about something else, if I can't reverse the thinking itself, then distracting myself with irrelevancies to the moment. At least, if I need to, I can start doing jewelry or turn on the Comedy Channel, as Lynnie has always suggested. ANYTHING but let myself go down the road of letting myself feel guilty and tearing myself to shreds...
I know, I know, but I AM guilty and evil, the voice in me cries. "How dare I let myself off the hook? I don't deserve t not feel bad about myself!" Well, I suppose that's where I have to trust Dr O, and the past, where allowing myself to indulge in such darkness has only led bigtime to trouble...But it is soooo hard to let go of the bad thoughts, the conviction that I am in fact the OTAM, the evil soul that I know in my heart of hearts that I am. In truth, I may not be letting go of that conviction at all, so much as not indulging the rumination on it, not allowing myself to "go there" or think about it, or contemplate the ramifications of it, should it be true. I need to say, So what? to such thoughts, and let them pass through me like cosmic dust, like the neutrinos we are bombarded with every day and never even know it. After all, if I can ignore such break-through obsessive self-flagellations, isn't that almost as good as denying their truth altogether? Well, perhaps not, but it is gonna have to do, as it is as good as it can get. I know I cannot get to the point of saying that I am NOT fundamentally evil...But I can let go of the ruminating obsession with it, the repeating it like an incantation, as if I really needed to hear it over and over...
I couldn't look at Elissa the nurse or Dr O today, too hard, too scary. Hard to look at Josephine on the way home too as I felt shell shocked and paranoid. But by the time I arrived back at my apartment, I had calmed down, esp after a PRN, and was able to enjoy lunch with my old publicist, and to make eye contact with her with relative ease...However, the night nurse, S, I have trouble with her. I used to like her and she gives a decent injection every week, but...I believe she is the one who stole my silver necklace with the pink teardrop, the first necklace I made wholly out of sterling silver. I dunno why I think this, only that she seems like the sort of person who would do so...she looks it, sounds it, smells like it almost. (Though I have a terrible sense of smell, in this case it does feel like smell.) I just feel like she is the one. One moment it was there, on the black felt I photographed it on, and the next minute it was gone...and I don't know where it is. I haven't found it in two weeks, despite a good joint cleaning of the apartment with Josephine just two days ago.
Tonight I tested her, by just talking about the lost necklace, casually, as if I really didn't have any idea where it had gone to, to see her reaction. Unfortunately, I didn't make eye contact, so I don't really know her reaction, or had a hard time truly gauging it. She didn't react too strongly, but then she could have been avoiding it, and she only made a passing comment as she left: I hope you find what you are looking for. Also, before she left, she said, You seem down tonight. But that was all, then she just up and walked out...Weird, but I wasn't down, just testing her veracity and intent on that, so I wasn't very jolly and cheerful, which is what she is used to with me!
Now for the big "news" which is really a culmination of "olds": I have cut off any and all contact with Karen (and by extension, since he is her lackey, Gary as well). This was not my intention at the start of the week, or at the end of last week, until Joe informed me that "because of what happened" two Sundays ago, Karen and Gary quit their jobs, driving me to visit him. Now, one, 2 Sundays ago, Karen had blown up at me for wanting to visit Joe twice in a row, something I knew she would not allow, but that I had a right to desire, since she went 3-5 times in a row some weeks...But also, she yelled that we had to go on Sunday because I had forced her to rearrange her schedule, which she knew perfectly well was an outright lie. She knew as well as i did that she'd changed the schedule herself, having a doctor's appointment that interfered with her driving me on my usual day. (and to explain: whoever drives me got $25 a ride and used MY car, MY gas...That was the arrangement Karen wrangled out of Joe, without any input or agreement from me...that was simply what she wanted and what she got, and I had to put up with it, or I got no ride...I cannot drive there myself, not for 30 minutes, I'd fall asleep and/ or get double vision within 10min.)
Anyhow, it was clear that Karen had decided to punish me for simply wanting to visit Joe on Sunday, and then on Monday, my usual day, because she had decided she could in fact go on Monday after all (and so she weas planning to visit then, instead of me!). And the punishment was to deprive not only ME of visiting Joe, but Joe of a visit from me. She'd fixed it so well that even Gary had agreed not to drive me, though he had no reason whatsoever not to, except for his tendency to kowtow to Karen...Well, that I would not stand still for. That was my limit. I told Joe that I'd had it, that whatever Karen had said about Sunday, she had lied, as usual. And that if he wanted me to visit, he would have to arrange another driver, because I would not be accepting any further rides from Karen or Gary, even when they decided to "take me back" as they assuredly would, when they once again needed the extra cash.
As it turned out, my friend and housekeeping buddy Josephine said she would take the job, and though it meant I would arrive at the hospital as early as 10:30 when 12pm was visiting hour, it freed me from depending on Karen, and for that I rejoiced. Karen has a way of trying to make people dependent on her, like Joe and Gary and then me...She almost had me, and once she did, she would have done what she has done with Joe, forced me to obey her and do her bidding, buy her things or meals, do for her, or else...and she would have various punishments or restrictions, various things withheld from me that I needed, if I failed to do so, just as she does with Joe and Gary. Joe, of course, can't object, and so she uses his credit cards with impunity, and essentially controls his life. Gary acquiesces to her demands, apparently feeling that either he can find no other friends, or perhaps that she, who claims handicapped status every time she has to do something she doesn't want to (like bring up her groceries from the car, something she is entirely capable of doing, since she does it when shopping with me) actually needs him. But in fact I know that he resents her greed and her me-first self-centeredness that has her calling him at any hour of the night, or demanding that he go down to her car and get her groceries, 20 two liter bottles of diet pepsi usually, because she is too lazy to bother to make the 2-3 trips involved with her cart. It wouldn't occur to her to NOT buy 20 bottles at one time, to avoid forcing him to do this, no. And it wouldn't occur to her to offer to pay him, or to do it herself, or help him or any such thing. No, she gets home, locks the car and calls him on her cell phone as she walks towards the building: "Gary? Can you come down here and get my groceries? They are going to wilt in the sun! (Freeze in the cold...whatever)"
Gary may resent it, and I have noticed the microexpressions of rage cross his face before his usually docile demeanor returns, but he does nothing about it but continue to obey her. So he has made his choice and it is to stay with her, joined at the hip. Which means that because I took back all my keys from Karen, car key and apartment key, I asked for his back as well (I definitely do not feel comfortable with their having even emergency access to my place any more.) But it also means that he has deprived himself of any extra income he might have earned, all in his obedience to Karen's invoking his loyalty. Too bad for him, but as I said, he has made his choice, and it is to stick with Karen, liar and unethical, immoral person as she may be.
One further example of this lack of ethics, lack of morals really, is as follows: Karen bought several baskets to decorate her bedroom many months ago, back when Joe was still living here, and she was starting to redo her rooms...She lived with them, used them, for all this time (6-9 months) though she cleverly never removed the tags, and saved the sales slips...apparently for just this eventuality: she recently decided that she wanted to re-redecorate, and that these baskets did not go with her new colors. So, what did she do? Yeah, she decided to bring them back and get new ones. Why? Well, she reasoned, no one would be hurt, and she didn't want to pay for others when she could simply exchange these.
Now, maybe that doesn't sound so immoral to you guys, but it struck me as emblematic of the difficulties I have with her. My first reaction was: but you have used them! You can't return goods that you have used for 9 months, no matter how well you have treated them. You have enjoyed them and used them and if you want others, you need to GIVE these away to someone else and purchase others, not just trick the store into believing you want to exchange baskets you just bought (she wouldn't need a sales slip to do that). I was simply appalled. But I am often appalled by Karen's manipulations, as much as by her outright lies, and the calm way in which she justifies each one. And she does, she has a clearly stated reason she can give to rationalize away every single one, so that none of them suddenly somehow seem so terrible afterwards. But always they do seem so initially, and I want to hang onto that first impression, as I think that feeling of shock is important, a measure of just how ethically compromised her behavior truly is...I may come around to seeing how she thinks, and granting that Okay, it's not so terrible, when you put it that way, but in truth I value much more my pristine reaction of shock, that first reaction to immorality and lack of ethics that tells me Karen is, fundamentally, deceptive and as she proved time and again, a liar.
Okay, okay, I am going on and on about this and you have gotten the point, I am sure. In any event, she is one "friend" I am well shed of and will not miss. I still have Lynn and Joe, and have Josephine and Leila, Lynn's sister, though I do not know how long she will be remaining inthe area...I also do not worry about loneliness, as I love solitude and actually rather resent having to see people as much as I have had to this past year. I used to go out only once a week, and I loved staying in, not seeing anyone. But this past year, what a whirlwind of activity! I do not like it at all. These past several days, with the press demands over my head, I have also stayed home most of the time, and it has likewise been great. I have gotten much more done, and enjoyed my time alone. I will miss being alone when I have to get back to being Miss Social Butterfly once again...I hate that, but it seems it has to be done.
I wanted to upload some jewelry pix here, but I fear it is getting too late and I must take my Xyrem and sleep. So I will wait till a later date and try to do it then. I need to learn about Ebay and how to sell there. I dunno how else I can do so...and earn just a little extra, not for much more than to feed and nourish and replenish the hobby itself, though it would be nice to have some spending money too. If anyone has any tips or advice, do let me know in the comments section or by email, address above.
TTFN 8D
PS My eyes are doing their usual wonky thing that no one seems to be able to figure out or take seriously. It is so distressing that it impedes my reading, and hence my proofreading with any comfort. It has been a trial to write as much as I already have and to go back to proofread it all again would take more stamina than I have. Forgive me, please, for all the typos I suspect you must have found there.
Elly asked this of me recently, and I thought, well, that's a good topic for this blog, a short entry concerning Lynnie (Carolyn), about whom I have written so little up till this point.
What to say, what to say? Since the book tour ended, Lynnie and I have not seen as much of one another as we did during those wonderful whirlwind days, which I greatly miss. Both the speaking and traveling, and the fact that I spent so much time with her.
In the time that passed since I last saw her (before Christmas), she sold her condo and moved into a one room apartment with...Oh, well, first things first. Though he was on our book tour and some of you know about him (and maybe I have written about this before?) the most important thing about Lynnie these days is that she is in love. She, who was divorced, as you who have read our book know, some years ago, is madly in love with Salvatore, Sal for short, a man she met through Match.com whom no one I know can seem to dislike in the least. More important, he is, she says, simply the kindest and most emotionally available man she has ever met; we all heartily approve of him too. That is quite apart from any comparison with her other "boyfriends", with whom in fact there is none: they are not worth remembering, except insofar as I worried at the time about Lynnie's choice in men. I thought for some reason she was finding guys who reinforced, or wanted to create a tendency towards low self esteem, guys who at a minimum had a bent for mental or emotional abuse. This is not to say that she accepted it; she did not, and she made it clear that she would not. Nonetheless, she kept dropping one, only to find yet another with hidden anger towards women.
But enough of that. She and Sal, "engaged" for at least a year, have almost decided to go through with a wedding, though I fear the thought of planning for the event stops them in their tracks. I am glad they are at least thinking in that direction. It pleases me immensely as I missed Lynnie's first wedding, having been hospitalized at the time. (It turned out, had I not been, I would have been housebound anyway, due to a blizzard the night before.) I would be devastated if I could not attend the ceremony this time. But first I have to wait and see if they actually go through with it. The problem is not that Sal is dragging his heels but that Lynnie is. She is wary that somehow Sal is going to change, once he is formally attached. I dunno how she means, change...Will he turn into a pumpkin? Or a frog instead of her prince? Perhaps that is precisely what she fears, that he will stop being the sensitive, emotional, accessible man she loves, and turn into the reserved, stubborn, cold sort she was always used to. Her first husband, and then the others were of that mold. I think she is afraid that marriage will break the spell. I sincerely doubt it. Maybe I am naive, and I know I am too trusting for someone who is basically paranoid, but I believe Sal is exactly who and what he appears to be: the wonderful son of delightful and warm parents, with whom they are now living (in the upstairs half of a duplex home). If you met Ida and John, you would suspect that Sal is the sort of son they would raise, that at least one of their children would be exactly as he has shown himself to be. In truth, he is so terrific he has made me fall in love with Italians, assuming that if Sal and Ida and John are any example, they must all be lovely people. (Naturally, Joe is half Italian, too, so that only goes to prove the point once again!)
Now, about that one-room apartment..Lynnie and Sal lived there for about 6 months, maybe 8, while Sal renovated their part of the duplex, so the two of them could move in by September. After they did, there was still much work to be done, so they spent weeks painting and plastering, while "Green Demolitions" put in a recycled kitchen for them. Now, Lynnie is back to taking ballet 4 times a week, though she no longer ballroom dances, alas, because she has no partner and at this point doesn't want to dance with anyone but Sal.
Lynnie is in love, the main feature of her life, but yesterday and all last week she had a splitting headache, a migraine to beat all migraines. I felt terrible for her, and didn't want even to call to find out if she was any better, lest I wake her or the telephone ringing cause her more pain. I dunno...my own migraines have attenuated greatly since menopause. I regularly experience perhaps one a month, a headache that might last for 3 days, but mild enough to be treatable. Usually they go away with Imitrex, only troubling me each morning when I wake and when the Imitrex wears off each afternoon. I have not had a monster migraine in a year...Knock on wood.
But Lynnie's headaches have not gotten any better that I know of. And the one big difference between us, or at least one factor that is KNOWN to cause headaches, is that she takes HRT and in fact was always on the "pill," one or another, for birth control. I don't blame her, of course, not for the latter (though I do not understand the former...) but I fear that it is the hormones in the HRT that are making her headaches persist past the time when they should diminish naturally...I know our maternal grandmother's headaches stopped or got significantly better at age 50, as mine have, and I believe Lynnie's could too, in time, if she would only stop the HRT...But I know she won't (she denies the HRT has anything to do with it) despite the risks of breast cancer. She thinks there are too many benefits, too many, shall we say, "youthful benefits." I say, phooey to that. Grow up, and get over it. There are worse things than getting old. Like Joe with ALS, or not getting old at all! But that I know is not fair. We all have our hang-ups and she is entitled to hers, even if I do not understand.
What else? Well, she is writing her novel again. About that I will say only that it was watching the movie I AM LEGEND that reinvigorated her and got her to take another look at it. I must admit she has a good plot, and if she can write it well, might have a best seller. But that is sometime down the road, for the book must first be written, right?
Well, Elly, I know that I have not said all that much about my twin sister, nor very well or very coherently. But I have written all that she told me when I "interviewed her" for this post today. And I cannot think, myself, of what more I should write. I know there is surely more I could say, more of what is between us that I could discuss, perhaps. But I am not sure I want to do that right now and all you asked was, How is your sister? I have written about that and only that. I hope it is enough. TTFN, and thanks for asking.
I am writing this blog post on behalf of Kate, who so kindly suggested it as a topic. Perhaps my blog-reading would-be book- writers out there who are hopeful of being published will find this of interest and perhaps of use.
Now, of course, I am no expert, having had published only one non-fiction book, DIVIDED MINDS, and being in the midst of publishing another book, this one of poetry through a small non-profit press. But the bad thing is, my memory is terrible, so that I have forgotten a great deal of the process that took place with the first book. And as far as the poetry book is concerned, I am pretty sure that the procedure at this particular press is not standard at others; I dunno that there is, at small presses in general, any standard in particular, each one following its own idiosyncratic process according to its size, staffing and schedule.
That said, after the contract for DIVIDED MINDS was signed-- I did not sign the contract myself since only Lynnie was to earn royalties in exchange for all the time she took off from work to write the book-- after that, we were given a full year to produce a manuscript. Of course, we already had a good draft of it but it badly needed editorial help. As it turned out, our editor, D, was in absentia the entire year; she lied to our agent that she was working closely with us when she made no contact whatsoever, and she also failed to respond to any contact we initiated. Then when we finally got her to do something, she actively worked to undermine the book. She told us she was not going to edit at all; she would let the copy editor do that, the person responsible for correcting such aspects of the book as grammar, spelling and punctuation. According to her that was "all it needed." This was utter BS, but as I said, she wanted to undermine the enterprise and not to edit the book was as good a way as any to ensure it failed.
Not SOP in publishing I am certain of it, though editors no longer take as deep an interest in their writers as they used to, so I hear, nor spend as much time and energy on editing as they formerly did. So writers are more and more on their own in terms of preparing their own manuscripts for publishing, with some editorial input, yes, but not the coddling and "hand holding" relationships you read about in the past.
So we got the manuscript done, with help from Elizabeth, our agent-editor extraordinaire, and having learned through trial and error how to edit ourselves (more or less successfully). It was deeply flawed, I would come to feel, due to a lack of any editorial oversight, but that could not be helped, given D's, the acquisition editor's, determined efforts not to help the book be the best it could be (why she went to the effort even to acquire it for St Martin's in the first place is beyond me, given all she did to make it tank).
Once the ms was finished and the year was up, the book went into production, and now St M's had their year to get the book into print. This meant a flurry of copy editing and corrections and last minute corrections of those; getting credits and permissions for use of photographs; discussing cover design; then the galleys, the uncorrected proofs appeared, some sent to reviewers, one sent to the authors for very last minute minor corrections: single words or letters or punctuation mistakes. That was a thrill: to see the book in a published form, though not the final version: a paperback only, without the finished cover, only a mock-up of it, so to speak.
Meanwhile, the publishers's catalog came out a few months in advance of publication, with the company's publicity for the book for vendors and reviewers who might have been interested in getting a hold of the book once it was published. (Or perhaps a catalog even provides some of the major reviewers with advance notice of the books it may be interested in reviewing before they come out, I dunno for certain...)
As for my book of poetry, well, as I said, I am in the midst, but nothing is going as it went with the memoir. Instead of a year to write the manuscript, I sent it in as a finished book and it was chosen "as is" for publication. I learned this formally in late November or early December, though I had an email as early as October. Then I waited to hear a word from the publisher about the details...When I did hear, in the second week of January, it was with a 2 page letter of "assignments" -- I call them demands -- and a 12 page questionnaire with hidden assignments in that as well, all to be finished in five days. Now, it is true that this packet should have arrived around Dec 22, but was sent to Dr O's office when she was on vacation and thus was not seen until Jan 8th, when she returned. But even so, the idea that it was to be worked on the week of Christmas and throughout the holidays is unconscionable. Why, when the publishers knew the questionaire very well, and knew what was on it (it is for sales and marketing and is the same every year, used by their distributor) why they didn't send it in November, I do not know. I suspect the main person involved of severe procrastination, resulting in a deadline crunch for everyone else...
Be that as it may, the "assignment-demands" are legion and lengthy and struck me as daunting, if not impossible, until I enlisted my old publicist Diane to help out. She knew exactly how to get the information demanded on the forms, things like journals and addresses for reviews and advertisements, etc etc and set to work immediately. With her help and my working straight through for three days, I was almost done by last week, but for Dr O's contributions, which I expected would be the hold up...And of course they were. They are still not here, still not finished. But that turns out to be okay as it gave me more time to perfect the 500 wd and 100 wd essays that were part of the assignments. And time to worry at the manuscript a bit more.
The manuscript, ah, the manuscript. Now that is a problem in itself. I feel like scrapping the whole thing, frankly. I don't even think the poems in it are any good, many of them, and certainly, due to the overall subject -- schizophrenia -- not my best. My best poems have little to do with mental illness, but were written when well and when not dealing with it, except perhaps from a distance (as in my poem What You Know and When You Know It, which I wrote in October). Now I am getting cold feet, as I do not want my first, and perhaps my only, book of poetry to be a collection of my second-best poems. I dunno how I got suckered into this! I guess because I heard there was this poetry series about chronic illness and I had some -- many -- poems about my own, so that I thought I could "win" it...But for what?
In point of fact, if I publish this second rate book, I lose the chance to enter a better book in the Emily Dickinson contest in 2008 or 2009, whenever it is given. That award goes only to someone over 50 years old who has never published a book of poetry before. Plus, there is a cash award of $10,000.00! Wouldn't that be better than what this publisher is putting me through? It is not that I do not want to do readings and publicity or community service...I am perfectly happy to do so. But to be ORDERED to because of government grants providing the funding for the publishers...well, I dunno. It seems like any other publisher would be easier to deal with! But the most important doubt I have has to do with the poems themselves: do I want to publish what I consider second rate poems? Despite everyone else's assurance that they are "good" I do not believe they are, and what is more, the people who have written blurbs for the back cover have not written anything but that they are "deeply felt and moving," which is code for "otherwise crappy poems." Nothing is said about them as poems, because there is nothing to be said, only about my intentions, about my feelings. "Deeply felt"...Hah! Well, in fact I agree, after looking at what I wrote, that a lot of the poems are lacking...And I took out three or four as unbearable to me, poems I was persuaded to keep by Dr O, despite profound doubts about them all along...Well, I will not allow them in the book, not any longer. If I do publish this volume, I refuse to do so with those despised poems included.
Enough is enough. I dunno what to do. I want to publish a good book of poems, a book of good poems, not just any book, not just so that I can say "I wrote a poetry book." I don't care if I have to wait...I really don't. I'm almost thinking at this point I'd rather wait till 2010 and try for the E.D. award than go forward with this particular one. I also don't know that I want to be roped into this publishers requirements either. What to do, what to do?
This is a difficult subject for me to figure out, much less discuss. It is the fact that Lynn is apparently in a terminal decline (though she has rallied a little now that Danny, her son, is visiting from Texas) and her husband of 61 devoted years is going to be left behind, that brings it to the forefront. That is a terribly sad situation by itself but it is not what I wish to discuss here; it's only that her closeness to her husband for these past decades has been such that I can only call it true love undying, something I thought didn't really exist. The understanding that some people fall in love and love for a lifetime brings up evokes all sorts of "feelings" in me or at least brings up various issues.
First among them is my own felt inability to love. Despite what I say (to Lynn, to Joe) and despite what I want to feel, I think I do not feel any emotion deep enough to match what I think most people mean when they say "I love you." For one thing, I am not sure I feel that committed to the people I "love". I mean, I would give them a kidney, yes, I would give them my bank card, I would probably do all sorts of things for them. But I would, I venture to say, do those things for almost anyone if asked, or would want to. Though I can't give away my kidney to just anyone, lest my twin sister need it someday and I be her perfect match, I have in fact given my bank card to a number of people, along with my PIN, and told them to take as much as they needed! I would not say I loved them, however, unless I could say, in general, that I love humanity, which I do not, particularly. I mostly did it out of a feeling that, were it I who needed the money, I would feel relieved if someone helped out. I wanted them to experience that sort of help and relief from someone, just for once, and that someone just happened to be Pam W. Actually, I wanted to treat everyone as if they were Jesus Christ coming back in disguise...But it was of course foolish of me, as I learned when my bank account was 2 or 3 times found to be missing large sums of money and the stranger nowhere to be found.
But as I was saying, I cannot feel the deeper feelings of personal love, nor do I want or am I able to accept the intimacy of physical love. At 55, I have never felt the first and rarely experienced the second, and then only with distaste and feelings of being trespassed and invaded (it was loveless, by definition). This bothers me, and it worries me that when I am Lynn’s age, I will be dying and come to the realization that I regret I missed out on such basic experiences as love and sex. Yet, I cannot make myself love, can I? Nor force myself to enjoy the physical act of love, especially when I am not in love, can I? (I know, I know, love is not a feeling, it is an act of caritas, or loving-kindness yada yada yada, and it may well be, in the end. But we all know what I am talking about, the feeling I refer to, whether you call it love or something else...
But more, I fear I do not in general feel emotions properly, or remember them the way others do, or even as long as they do. To give an example, I was talking with Dr O the other day, on the phone because I could not get to her office and it had been several weeks since I had had an appointment (her vacation then a lack of a ride had prevented them). Lynn was the subject, and the fact that she was so ill I was not allowed to visit her. I became somewhat tearful as we spoke, and Dr O was sympathetic but as the conversation went on, it gradually turned away from Lynn, or I allowed it to, and my tears dried and I was distracted from the apparent sadness I’d felt. Then, about five minutes later, Dr O brought up Lynn again. “How do you feel about Lynn?” she asked, seemingly a propos of nothing. Odd, I thought. Why is she asking me that? But I didn’t feel anything about Lynn, no grief, no sadness, no nothing. It was as if I’d forgotten she was dying, forgotten how I felt, forgotten there was anything sad going on at all. I knew, vaguely, that I should feel something, that something sad was in fact taking place. But I mostly felt irritated that Dr O wanted me to dredge it all up once more, to find the feelings of sadness all over again, when it would take time and energy and cost me...
She didn’t seem to get it, only wanted to ascertain that I'd had so-called "normal feelings" and that I had felt sad at the time, which I assured her I had. But she didn’t understand the profound lack of feeling, of emotional memory that prevailed only minutes later, a void and even a coldness that scared me. It wasn’t that I felt anything against Lynn, only that I forgot to feel something for her or about her...It was in essence as if I forgot her. Forgot I was supposed to feel something! The very fact that I phrase it that way says something is wrong. No one is supposed to feel grief, most people simply do. I feel it because I know I am supposed to? What is wrong with me? Is this schizophrenia or am I simply a psychopath, a monster?
This worries me, it really does, far more than whether or not I will ever enjoy sex or physical intimacy. If I cannot love, how will I be able to care about anyone deeply enough to grieve or feel real emotions? Will it always be a matter of how I am supposed to feel, to act, to do? Or will I ever be able to simply trust myself to really experience the proper emotions at the proper depth and act out of them? I tell Joe every time I see him, I love you, but I do so because I know he wants to hear it, and it is a gift to and for him. But do I really feel what he feels for me? I doubt it...I may get jealous of Karen visiting so much more often than I can, because she can drive there at the drop of a hat, while I need to get a ride, from her no less. But the jealousy comes from simple possessiveness, and the feeling that she is trying to take away someone who has been my best friend for far longer than he has been friendly with her. But do I feel like his "girlfriend" as I have agreed to call myself? NO WAY! I just call myself that because it makes him feel good and I want to do that for him. There is no particular reason not to. It is not as if I will be finding Mr Right and wanting to "break up" with Joe anytime soon...Am I wrong to do this? Am I just pond scum for essentially deceiving him in this way, even though it is simply to make him happy, happier than he has ever been?
As for other feelings, oh, I know, I do get afraid and angry, yes, and those are real, but the object of them is not, because it is anger and fear in the paranoid sense. So what use are those emotions, and how “real” are they, if their cause is imaginary?! Yes, they are real, of course they are, no unreal anger or fear could do the damage that paranoid schizophrenia can wreak. But in the sense that such feelings aren’t based in reality, well, you see the problem. And besides, it is the higher, less primitive emotions I am talking about, not the primal ones, the amygdala-generated ones. It is easy to feel a “flight or fight” emotion; it is something even animals experience. But to feel grief or love or what have you, those do not proceed from the amygdala, but take a longer path around the brain, and while certain animals may also experience these (voles, dogs, whales and elephants come to mind) they are certainly part of what makes us human.
So I ask again, am I human? Or am I a monster?
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Here’s the poem, finally finished, that I started two years ago or so for Lynn’s husband Cy, on his 88th birthday. Prairie voles are noted for their monogamy and really remarkable devotion to each other as mates and to their offspring as well. They really have been studied in the lab for the source of what hormones and other organic molecules make them, and us humans by extension, fall in love.
VOILÁ LES VOLES
For Cy, on his 88 th birthday, who needs
no metaphor but deserves a poem
Thinking to write a gift, I studied the prairie vole,
monogamous, doting parent, tender provider,
a model, literally, for human love.
If I could write of prairie vole attachment
it would be a metaphor for this couple’s devotion.
But the poem didn’t work. Nothing I did
could make it fit or squeeze it into a proper form.
A year passed. I wrote other poems,
but no gifts, because none presented themselves.
Finally, I had to do something with the voles,
They were rubbing my mind raw.
I wrote everything I’d learned about them
on a sheet of paper, twenty different facts—
So much to know about so tiny a creature,
all five inches of peppery fur and tail!
Surely it matters not that a widowed vole
prefers to remain alone rather than mate again.
It’s a behavior scientists attribute to hormones.
But that made me think. Why merely hormones?
Why shouldn’t a vole experience love?
It has the same love chemistry we do:
vasopressin, oxytocin, dopamine—
Aren’t those teenagers’ falling-heels-over-head
chemicals, the “attachment molecules” all mothers
are awash in giving birth and no wonder:
pain would be the otherwise all
they remembered...? So, who’s to say
that voles don’t grieve when separated in the lab
or dream of evenings in their moss-lined nest,
of making love then sleeping side by side?
I have included no one else in this discussion, but I figured that the two front runners for the only party I will discuss in this forum in terms of the presidential campaign are, in fact, Hillary Clinton and Barack Obama, probably now running neck and neck. I myself find it hard to choose between the two, liking each for different reasons.
I am very much enjoying Barack Obama's memoir DREAMS FROM MY FATHER, which is very well-written, even lyrical in places, so that it is a real pleasure to sit down with it. While I learn about his background, his past, and his past dreams and hopes and struggles, what made him who he is today-- who he is today I still do not know. I must go on to read his second book and more of the campaign information at his website and so forth and see what I can find out. I suppose I should have been doing so all along, but better late than never...Today, though I will report to you on his views on Mental Health Issues.
People who campaign for Sen. Obama seem inspired by his rhetoric of hope and change, and I think that anyone who inspires the young to want to work for the country's sake instead of merely for themselves, anyone who can act on their spirits as JFK did once on us, is a great asset to the party and to the nation. In that light, I watched Obama's 2004 DNC speech that I was told so many found awe-inspiring. If it had been only a speech, alone or in another context, it would indeed have been rousing and spirit-lifting, even 4 years later. But the problem is that when I watched it, it was four years later. As I listened to that speech that purported to be stumping for John Kerry, I understood with sudden clarity that it was actually a campaign speech for Obama, who even then was positioning himself for this very moment, in 2008, when he would be the one campaigning for the presidency. If you listen to the recording, you will hear it at once. He does not speak of Kerry except in passing, only of Obama's dreams and his purposes and his aims...If he mentions Kerry it is as if it is only by accident, or because he suddenly remembers that this is actually supposed to be a speech on Kerry's behalf and not yet an Obama campaign speech! That's not to say that the crowd is not enthusiastic and roused and inspired to vote for Kerry, though I think Kerry was not much on their minds during the speech, even if they did vote for him (it was a done deal anyhow).
I dunno, I have not seen many of these DNC speeches, and maybe that's what they are meant to be, pre-campaign speeches by the up and coming, ways to position onesself for the future, and not really a speech on behalf of your candidate. Was that what Barbara Jordan's famous speech was like way back when? I don't recall, because I was not mentally able to pay attention back then...
So, while Obama speaks of change, of changing the way things work in Washington, he himself is the consummate politician, at least in the sense that he planned his campaign for the presidency from this speech four years ago and very shrewdly. There is nothing wrong with that, only that no one should think this "grass roots" thing just sprang up out of nowhere...On the other hand, to raise some $20 million plus in small donations is nothing to sneer at...
Now as to Mrs Clinton, well, I need to learn more about her too, except that of course she has been a public figure for much longer, so some of her story has percolated through into my thick skull despite its firm resistance anyway. She has in fact more experience than Mr Obama. For now. Whether that matters, since her own husband did not have much more at the start of his presidency, remains to be seen.
I cannot evaluate Clinton properly anymore than I can Obama, what I can do is put up for you a comparison of what the two candidates each said in their response to a questionnaire given to them by NAMI on mental health issues. I did not compare every single question, only picked out a few issues, juxtaposing Clinton's responses with Obama's. This is how they answered NAMI's questions, in their own words.
BRINGING MENTAL HEALTHCARE TO THE BALLOT
NAMI's Questionnaire for 2008 Presidential Candidates
1. Support mental health and substance abuse coverage in all plans to provide affordable health care?
HILLARY CLINTON:
Mental health is an essential component of every American’s overall health care status. Since mental illness is the leading cause of disability and affects 25 percent of Americans, I recognize how important it is to address this vital part of health care. As such, I am determined to do all that I can to increase understanding about mental and behavioral health and improve access to quality care and treatment for all Americans.
To improve access to health care services, including mental health care, my American Health Choices Plan will provide quality, affordable health care to all Americans, including the millions who don’t have coverage today. My plan allows people to join the same plans that are available for Members of Congress, most of which cover mental health care and many of which cover substance abuse treatment. I believe we have a moral imperative to ensure that every American has access to the quality health care they need, which is why mental health services will be included in the Health Choices Menu. Working with Congress, I will make passing universal health care my top domestic priority.
My plan also covers prevention, which will not only improve Americans’ quality of life, but also reduce lost wages and enhance workplace productivity. Under my plan, insurers participating in a federal health program, like Medicare or Medicaid, willl have to
cover prevention as a condition of doing business with the federal government. Recognizing that early detection and treatment of mental illness can result in a much shorter and less debilitating illness, we must do what we can to keep people healthy.
My American Health Choices Plan will prohibit insurance companies from discriminating against people on the basis of age, race, gender, or other risk factors, including pre-existing conditions like mental illness. Insurance companies will be required to continue to provide insurance to people who have paid their premiums and want to continue coverage. Under my plan, the days of insurance companies competing over how to exclude people from receiving the care they need will come to an end. It’s just wrong that people pay for insurance and then insurance companies work to determine how not to cover people when they are sick.
BARACK OBAMA:
My national health plan will guarantee affordable, comprehensive and portable health coverage for every American through partnerships among employers, private health plans, the federal government, and the states. In addition, my plan will include coverage of all essential medical services, including preventive, maternity and mental health care.
3. Ensure that active duty military, veterans and reservists receive the mental health care and disability payments they need to live successfully with mental illness?
HILLARY CLINTON:
Our country has a duty to reform and ready the military for the increasing number of veterans, active duty military, and reservists suffering from mental illness. The wars in Iraq and Afghanistan have resulted in increasing numbers of service members returning with Post-traumatic Stress Disorder (PTSD) and other mental health conditions. As a member of the Senate Armed Services Committee, I am working hard to ensure our men and women in uniform and their families have the care and support they need and deserve. In October 2006, as part of the 2007 National Defense Authorization Act, the President signed into law major pieces of my Heroes at Home legislation, which requires the establishment of a working group to identify ways to help Guardsmen and Reservists transition back to civilian jobs after deployment in Iraq or Afghanistan and sets up a DOD Task Force to assess the mental health challenges – including PTSD – faced by members of the Guard and Reserve. In September 2006, I secured $3 million in initial funding for Heroes at Home in the annual Department of Defense Appropriations bill.
In March 2007, I introduced new legislation to build on Heroes at Home. Specifically, my legislation would expand the use of telehealth and telementalhealth services, which can be particularly helpful to service members or veterans living in rural areas, and help family members taking care of a loved one to get training and certification for dealing with brain injuries and psychological injuries.
In the 109th Congress, I also cosponsored the Healing the Invisible Wounds Act of 2006 with Senator Daniel Akaka and other colleagues. The legislation would protect PTSD compensation, enhance counseling and readjustment services available to National Guard and Reserve members returning from a combat theater, and authorize additional funding for Vet Centers.
BARACK OBAMA:
A recent military survey found that 49 percent of returning National guard members report psychological symptoms, a higher figure than their active-duty counterparts. Relative to active duty troops, guardsmen, reservists and their families have limited access to military chaplains, family support programs, and other programs designed to support psychological health. I will work to improve mental health care at every stage of military service – recruitment, deployment and re-entry into civilian life – so that active duty military, veterans and reservists receive the mental health care and disability payments they need for a productive and successful life. My commitment to the mental health of our citizen-soldiers includes:
Recruitment: Recruiting more mental health professionals; improving screening; and instituting fairness by guaranteeing that if the military determines on the front end that an individual is fit to serve, that individual will not be denied benefits on the back end on the grounds of a “preexisting” condition.
Active Duty, Training, and Deployment: Placing more mental health professionals with troops as they train, deploy, and return; fighting the stigma of psychological injury by enhancing training; and helping military families by offering more counseling and support to family members.
Return to Civilian Life: Requiring individual, face-to-face post-deployment mental health screenings; increasing the VA budget to recruit and retain more mental health professionals; making PTSD benefits claims fairer and more accurate by providing better training and guidance to personnel; and expanding Vet Centers in rural areas so that veterans and their families can get the care they need where they live.
Support for Guardsmen: Placing a mental health coordinator in each of the states’ Adjutants General’s office and giving the states the resources to provide better follow-up following a guard unit’s return from deployment.
I was also an original cosponsor of legislation to improve care for traumatic brain injuries (TBI). As president, I will establish standards of care for TBI treatment, require pre- and post-deployment screenings and improve case management so that servicemembers get the best possible care.
7. Support Medicaid coverage and reimbursement of effective, recovery-oriented and evidence-based mental health services
HILLARY CLINTON:
Medicaid is a vital source of health care coverage for millions of children and families and acts as our nation’s health care safety net, providing coverage to more than 50 million individuals nationwide, about half of whom are children. As the largest payer of mental health services, Medicaid is an important component of our nation’s mental health care system. As such, I am deeply concerned about the Medicaid cuts that have been proposed by President Bush, including limitations on the availability of Medicaid rehabilitation services. That is why I supported a moratorium on this proposal in the recent SCHIP reauthorization legislation. Arbitrary Medicaid cuts that limit access to quality care for millions of low-income Americans are unwarranted and would only worsen patients’ health statues. As President, I will work to ensure that the Medicaid system remains a reliable source of health care coverage for our low-income working families and children
BARACK OBAMA:
I believe that Medicare policies should provide effective mental health services for people who live with mental illness.
11. Support policies that eliminate the inappropriate use of seclusion and restraint and foster humane alternatives?
HILLARY CLINTON:
There is no room in our society for the inhumane treatment of patients. As such, I believe that the only case in which it is permissible to subject mental health patients to restraints or involuntary seclusion is if their safety or the safety of others is at risk. When appropriately used for emergency safety purposes, these practices should be ordered and supervised by a licensed professional.
BARACK OBAMA:
The focus by the medical community on improving health care quality has increased dramatically, with specific attention to underuse, overuse and misuse of health care interventions. The use of seclusion and restraints has been identified as a serious area of concern and I will expand and accelerate research to determine appropriate use, if any, and the development of effective and humane alternatives.
12. Support accelerated investment in National Institute of Mental Health research on mental illness, co-occurring disorders, recovery and reintegration into the community?
HILLARY CLINTON:
We live in a time of extraordinary and historic opportunity in medical research. For example, research on the mind, brain, and behavior leads directly to clinical advances in mental heath treatment. As such, we need to lend support to the National Institute of Mental Health (NIMH) and other institutions so they can forge a path to revolutionary treatments, disease management and eventual cures. As an advocate for health care progress, I have long been a strong supporter of efforts to increase the budget of the National Institutes of Health (NIH), including NIMH. As President, I will push to double the budget of the NIH, including the NIMH.
BARACK OBAMA:
I fully support greater investment in NIMH.
20. Support programs and policies that result in competitive employment for people living with serious mental illness?
HILLARY CLINTON:
I strongly believe that we have an obligation to help those with disabilities – including chronic mental illness – achieve meaningful employment opportunities. As a testament to this commitment, I rigorously fought the Bush Administration’s “WIA-Plus” proposal, which would have undermined the Vocational Rehabilitation program by allowing states to spend the money on a wide range of activities, including those that would not help individuals with disabilities address barriers to employment. As President, I pledge to financially support the Vocational Rehabilitation program. In addition, my husband was proud to sign into law the Work Incentives Improvement Act, which created the Ticket to Work legislation. This bill made it possible for individuals with disabilities to maintain their Medicaid coverage while working full-time. I believe people shouldn’t lose their health insurance if they choose to go back to work, and that we should work aggressively to remove barriers to work for individuals with disabilities.
On the eve of the 17th Anniversary of the Americans with Disabilities Act, I announced a four-point agenda to improve employment opportunities for people with disabilities, which can be accessed here: http://www.hillaryclinton.com/feature/ada/. In it, I said I would promote innovative employment strategies for people with disabilities, double funding for assistive technology loan programs, provide more technical assistance for employers, and expand innovative state and local job connection strategies. I also said I would re-establish the Clinton Administration’s goal of hiring 100,000 individuals with disabilities, enact a $1,000 refundable tax credit for workers with disabilities, and reduce disincentives to work in federal programs like Medicare and SCHIP.
BARACK OBAMA:
I believe that qualified workers with disabilities or mental illness should have the same opportunities as other workers. My goal is to increase the employment rate among workers with disabilities or mental illness so that it is as close as possible to the employment rate for all American workers. I am committed to funding and better enforcing the Americans with Disabilities Act, as well as strengthening other legislation to ensure that individuals with disabilities or mental illness have equal opportunity to participate in the workplace.
I also believe that the federal government should be a model employer of workers with disabilities or mental illness. I will direct all of my department and agency heads to bring their agencies into full compliance with all aspects of the Rehabilitation Act. To assure that the federal government holds itself to high anti-discrimination standards, I will increase funding to the Equal Employment Opportunity Commission and assure that the person I appoint to chair the Equal Employment Opportunity Commission is committed to enforcing anti-discrimination laws that protect federal employees through a strong Office of Federal Operations. Perhaps most important, I will provide leadership to my appointees throughout the executive branch so that they, employers in the private sector, and workers with disabilities across the country will understand the importance of this issue.
Further, I believe that employment opportunities for people with mental illness can be increased through better educational opportunities. I strongly support full funding of the Individuals with Disabilities Education Act (IDEA) and passing legislation that will fund school-based mental health services
21. Support maintaining health care coverage for people with disabilities who return to work?
HILLARY CLINTON:
I firmly believe that programs like Social Security Income (SSI) and Social Security Disability Insurance (SSDI) provide an invaluable safety net for those individuals that might need governmental assistance. I am committed to helping beneficiaries of SSI and SSDI not just make ends meet, but also improve their life and meaningfully participate in society. As President, I will examine these programs to see how they should be improved in order to ensure that Americans living with disabilities are able to participate in the labor market to the degree they are able. I will ask top government officials to work with health, retirement, and disability experts to review and make recommendations on how work disincentives can be eliminated from major federal programs such as SSDI, SSI, Medicare, and Medicaid eligibility. This review will develop recommendations to eliminate inconsistencies across states and will require HHS to release a best practice report that will make explicit recommendations to reduce disincentives to work. I will also eliminate the Medicare time-limit, allowing individuals to continue to work as long as they are able, and still retain Medicare eligibility. In the Senate, I cosponsored the Ending the Medicare Disability Waiting Period Act of 2007, a bill that sought to phase out the waiting period for disabled individuals to become eligible for Medicare benefits.
BARACK OBAMA:
My health care plan will provide quality health care coverage to all Americans, including people with disabilities who return to work. My plan will guarantee affordable, comprehensive and portable health coverage through partnerships among employers, private health plans, the federal government, and the states. My plan also recognizes that although all Americans are affected by problems with our health care delivery system, certain patient populations are significantly more likely to experience difficulties gaining access to health care and to receive lower quality health care. I will require that all health care providers collect, analyze and report data on the quality of health care given to vulnerable populations, including those with disabilities, to ensure appropriate care and good health outcomes. My plan also emphasizes care coordination and integration, which is particularly important for individuals with disabilities who often have multiple providers. Last but not least, I will support additional training of health care workers so that they are better able to address the needs of disabled populations.
22. Support increasing programs to divert people with mental illness from jail into appropriate community treatment?
HILLARY CLINTON:
SAMHSA currently funds pre- and post-booking jail diversion pilot programs at the local level. A 2004 evaluation of these programs by SAMHSA found that jail diversion participants spent less time in institutions and more time in the community. The evaluation also found that while the initial costs of these programs was more expensive, they resulted in overall savings to the criminal justice system. I believe that these results are promising, and we should be looking at ways to expand best practices from these pilot programs so that we can better treat non-violent offenders.
BARACK OBAMA:
I support a smart and effective crime policy that ensures that individuals with mental illnesses receive the treatment they need.
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 the...um, 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
ENERGY CURE
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.
