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Joe is losing function in his hands, can barely lift them to use the alphabet board to spell any longer. Unfortunately, he has not arranged to have an eye operated speech-generating device on-board (I had urged him to use his mother's trust fund to purchase one months ago but for various reasons he balked) and so it is difficult for him to communicate more than his most basic needs...Now I still don't know if he will buy one or use the one that rotates through the hospital at intervals and do without it more often than not. It makes me want to scream with frustration, that he has the money and will not spend it (his mother is the same way), would rather die or become utterly locked in...Especially because I know how much Joe loves to talk, how much he values a conversation!
That said, the following describes a real incident. Lynnie and I used to billow sheets over each other's headswhen we were kids, in order to induce otherworldly experiences, but in this case I did it in a shallow fashion in an effort merely to generate a breeze and cool Joe down!
Ten days after my last visit
and your hand can’t hold mine anymore
but only accept my fingers around your palm
until suddenly you need your own to speak,
struggling for the letters on the board
spelling in a panic of discomfort: Hot.
Your eyes clench and that’s when I panic too,
feeling the heat, wanting to heal and relieve...
But how do I cool you when already
you wear only a thin johnny? I lower
your one cotton blanket a modesty’s worth
but no modesty’s worth the sweat beading up
on your forehead, your face in a grimace.
Tell me then, spell it out, what do I do?
It’s an order I don’t expect you’ll obey.
But somehow, you manage, Keep the sheet.
No natural nurse, but finally I get it, separate
sheet from blanket and billow the sheet
several times for a breeze. It’s a breeze
to make you smile now and your smile is all
the relief I need and that billowing sheet
of a feeling that makes my day.
This next poem was written in response to seeing a photograph of paleolithic cave paintings of horses deep in certain French caves. The animals were so well drawn it made me wonder...
It was cold back then, even in the south of France;
everyone lived in caves, hunting and gathering in
for the daily grind or idyll, depending on how it looked.
But no matter how you look at the graceful horses depicted
in Chauvet cave, you know the hand of a master
-- generations of artist teachers-- someone with both skill
and the practiced love of horses and drawing horses put
these down with a sure eye. In the 21st century
in the 20th at least, in my childhood back in the 1950s
this would best be exemplified by those whose horse-love
could not be surpassed, nor their dogged persistence
in picturing them until the life of each one scintillated
in every detail. Which is why, when experts suggest
male shamanistic origin behind these animals, I say,
No, she painted them, one paleo-pre-adolescent Cindy,
Sheri, Carol, Marilyn, Andrea, Kerry or Michaela
like the girls in my 6th grade class, distinguished
by their horse-mad eleven years, who could never draw
a polygon to pass New Math or save their lives
but in one minute straight sketched the perfect Lipizzaner.
HUSBAND WITH WIFE, DYING
(In her final illness, a friend kept mumbling she was on a journey
but somehow she could never remember the destination.)
Thirty-six hours up and he’s slurring words
demanding grits instead of sleep,
afraid she will die if he closes his eyes.
For if he closes his eyes, sleep will take him away
from her and every last second of her last hours
counts, wresting from fate a moment’s victory
over the plot in the cemetery they’d planned to share.
He wobbles on Xanax to her bedside
and leans half over her, precarious, bent from the waist
to bestow his kisses. But oh, he is so sleepy
he threatens to topple on top. We hold our breaths
and breathe again only when again he is seated
at the foot of the bed with hospice
attentively taking his blood pressure
which is much too high even for a grieving man.
Sleep, the family begs, but no, he deliberately
fends off unconsciousness, knowing the dangers:
if even once he allows himself the luxury
she could leave him on the next plane out.
I just saw the most amazing 18 minute on-line video
at the New York Times website that I strongly urge everyone to take a look at. NOTE: the following radio interview is longer -- one hour -- but much more complete and more spontaneous, being older and therefore less rehearsed and polished than the video above:
Jill Bolte Taylor, whose brother suffers from schizophrenia, is a neuroscientist who herself suffered from a massive left-sided hemorrhagic stroke (that is, bleeding into the left side of the brain) about eight years ago. During this stroke, she was able, at least at the beginning, to observe herself experiencing the brain event as it was happening: Here I am, a brain scientist and I'm having a stroke! This is so cool! And because of her training, she understood which side of her brain was functioning and how to erxplain her experiences, at least after the fact. One of the things that was so striking, to her and most certainly to viewers, is that with her left brain out of commission, and her right brain, or right hemisphere, almost completely "in charge" she felt a kind of oneness with the universe that her connection with the left hemisphere had always prevented. She explains on the video that the left hemisphere is what gives us the sense of an ego, an I, and hence the sense of separateness, which the right hemisphere by itself has no sense of at all. THe right brain, by contrast, is in tune with the oneness of all things, is expansive and universal.
Her point is that we need to access our right brain sides more, all of us. That whatever the state of ecstasy she experienced when "in" her right brain, whether you call it nirvana or simple peace or something else entirely, it is worth cultivating in everyone, and between all of us. It would foster fellowship and fellow feeling, and a sense of mutuality and interconnectedness with all people and indeed with all things, which is precisely what the world needs now.
I cannot possibly do the video or Dr Taylor's talk justice with this brief squib. It is filled both with humor and with emotion and it is just plain riveting. But take a look at it and then check out the book, MY STROKE OF INSIGHT, if you are interested. Also take a look at her website. http://www.drjilltaylor.com/index.html
For those of you who are followers of my particular saga and are interested in how I reacted to the above, continue on below.
For some reason, I felt particularly bad after seeing this video...Oh, I was riveted, just as I promised all you readers would be, and as you probably were. And in some sense I was envious of her having had such as "marvellous" experience, though of course, not really envious, because it was within the context of such a truly dire and life threatening event. But what so "depressed" or worse, made me feel more evil than ever, what made me feel that I am...Wait a minute. Did I misunderstand entirely? The issue as she explained it was neurological, not good vs evil. The problem was access to left vs right hemisphere. I had felt evil, because I felt separate and unable to connect -- to anyone or anything. I have NEVER been able to truly connect to anyone, to truly care enough to MISS anyone after they leave...I do not miss Lynn even. I barely remember her! She is simply gone, and if not forgotten, well, absent and therefore somehow, not present, no longer a presence in my life. But I do not miss her...Why should I miss her? She is no more gone than she would be if she were in Australia...and I wouldn't miss her then! I never did miss friends who moved that far away, so why miss Lynn? But that is what I mean...I am or feel evil, because I do not feel connected enough to need people or want them near or even miss their presence. I do not miss hearing from them or seeing them...I, well, my point is this: according to Dr Taylor this could be due to an excess of left brain control and a lack of access to my right brain (if I understand her even rudimentarily). That my lack of feeling connected to other people has nothing to do with good versus evil but only with my relative reliance on my left brain versus my right brain, perhaps even with how much blood flow or brain tissue one side has over the other...Of course, it is more complicated than that, I am sure, but perhaps not, perhaps it does boil down, in its simplest terms to something like that.
But nothing to do with the brain is ever that simple. That has been shown time and time again. We used think, having been told, that the "right brain is creative" and the "left brain is logical" but it turns out this is not strictly so, because what about language and writing, which is...well, which is focussed on the left side, but if it is fictional or "creative writing" what then? Where does it come from? And if the writer is concerned with "good writing" versus business writing, where then? So many factors involved that I venture to say no one can yet decipher where exactly writing precisely issues from, right, left or both sides of the brain...And music too, listening is different from writing it, do they both involve the same side of the brain, or is one more logical than the other? Certainly, writing music, learning to write it, involves a great deal of logical skill. When does it become somehow "musical"? When is a person simply writing music rather than transcribing notes?
Ah, so much about the brain I do not know, and so much there is still to be discovered. Even about schizophrenia...They are now studying glutamate as a neurotransmitter of interest. Now this is fascinating as glutamate, which has been implicated in ALS as well, is not as "safe" a molecule to "play around with" as dopamine. You can't simply raise and lower levels in the brain with impunity or with relatively harmless side effects like sedation or EPS. With glutamate, you can actually have ALS-like side effects! Or worse. I understand that if you add too much or block too much glutamate the effects could be fatal. So the tweaking must be of a different sort than simply pouring some in or blockading the source. So far, though, one very small study on one drug has shown positive results, though it was much too small to extrapolate any conclusions from except that more studies should be done.
As for ALS, well, lithium, which moderates glutamate, is now being used with Rilutek, the only approved drug for ALS and one that only modestly adds to life span (a few months at best). THe two drugs are only under investigation, and nothing has been proved about the combination, but so far results have seemed promising for the two-drug combo being better than Rilutek alone for increasing ALS survival. By how much, though, I do not know. What I would be hoping for is a matter of a year or more, not simply a few more months, which seems to me to be a piddling improvement, and not really worth all the investigation. But who am I to say? With Rilutek's 3 months and Lithium-with-Rilutek adding a few more months, maybe to someone with ALS that would seem worthwhile. Any additional time is better than no time, at the start at least. But if the additional time is only end time, time added to the suffering, then I am sure the drugs are the benefit they are advanced as being. We were told that Rilutek adds to the healthy months, but I wonder how the hell anyone knows...Still, if I had ALS, I sure as hell would not NOT take it!
That said, I will end here, having touched a great many bases, and covered none very completely. I still feel very unattached, very disconnectd and separate from...well, all of my friends, from Lynn, from Cy and everyone else. Certainly I feel detached from Joe, always have, despite my trying not to be, and all my talk to the contrary...I try so hard not to be disconnected, but fundamentally I am, as I say so often in this blog for whatever its worth. I can't think of anyone in the world I would need or miss that I could not replace easily, no, not even Lynnie at this point...I think...That's how empty I am, how little fellow feeling I have, how disconnected I feel. But enough. The last thing you need or want to hear from me is about this much-worried issue yet again...I apologize.
Lynn died early Thursday morning, in her sleep, with her husband right by her side and all her family (except for the daughter who lives nearby) there in the house with her. This is what I wrote in my journal the next morning at 2:30am (Friday):
"Lynn died yesterday morning. Her son woke -- for reasons he still is not sure of -- and went to check on her and found her not breathing. He waited a while, since it could have been the apnea of Cheyne-Stokes breathing and not death. But a few minutes later she still had not taken a breath. She was still warm. He had woken at the moment life left her body, as they say sometimes a person will do when a loved one dies. Uncertainty or lack of absolute certainty that Lynn had died led him to wake Leila and her partner C , because C would know, having a medical background. C confirmed that Lynn was dead and so they woke Cy, who mercifully had slept through it, and everyone else and gave them the news...I can only imagine the sadness in that household, the tears, perhaps even the relief that it was over, that she was finally at peace...
Leila called me at 8:30am on her cell and as soon as I saw the number and heard her voice, I knew. "Oh, it happened, she ---" I didn't know what to say, feel or do. "Yes, honey, Lynn died," Leila said, "and we're all feeling just the way you do. Stunned, sad, we don't know what to do with ourselves...." We talked a while but I was largely numb and didn't even feel that sad. When we hung up I sat for a few minutes, until the reality of what had happened hit me. I called Lynnie. As soon as I heard the sound of her voice, I broke down and started sobbing. Luckily, she was still home and not with a patient, so she spent some time with me. Eventually, though, she did have to go to work and I knew it, so I hung up, feeling calmer anyway. Eventually I did call Dr O, but not because she had anything special to offer in this matter (in the end it took an email to get a hold of her, since her emergency number never did get to her). In any event, I didn't need a psychiatrist particularly. What I really needed, I thought, was to be with the L's. Fortunately, Leila called back twice, inviting me to come over, so after the visiting nurse came, very late for her at 10:30am, I drove over and stayed maybe 2 or 3 hours.
(I didn't go over there yesterday, Friday, because 1) I got up very late, around noon, and had too much to do, but mostly because 2) I wanted to leave the L's alone, not bother them, because 3) I have developed this strong feeling that Cy dislikes me intensely! There is nothing I can point to, nothing he has actually done or said that proves this or that would indicate negativity if I repeated it to others. I feel indeed that I have done or been so awful or so despicable that I deserve to be so hated! But what I have done, I do not know! I only know that I should stay away, not bother people there unless it is absolutely necessary...THe thing is, I cannot say it to them out loud, no. Because it would only bring denials, only force them to say, Oh no, we do not feel that way! Cy "loves you, cares about you, doesn't blah blah blah"...All of which I would not believe, whether it were true or false. And I do not believe they would tell me so, even if it were the truth, that I was correct about it all. So I cannot bring it up at all, and in that sense I cannot even rock the boat by not appearing tomorrow as I promised to...Oh, I'll play the game, yes, and even be sucked into it, but I'll be wary and I hope I'll have my wits enough about me to stay "an arm's length" away from Cy, at least far enough away not to disturb his equilibrium!)
Back to what I wrote in my journal early Friday morning: "About Cy, he seems stunned but resigned. It is good, I think, since death is inevitable, that Lynn died slowly. I know so. He had time to say good-bye, to come to grips with losing her and his own feelings of loss and abandonment. When he finally was able to admit, "I've lost her" as he did that last week, that was when she was freed to go...Or at least he came to that point in time such that when she did die, he was able to let her go with as much "ease" as was ever going to be possible. Not ease, no, but with acceptance and resignation that she was dying and that she had passed the point of no return.
I too, reached a final point just in time. That day she'd seemed awake, conscious if incoherent. Not clearly recognizing who people were but not clearly out of it either. In fact, I did think she knew I was there, when I spoke to her, when I was alone with her. That was when I managed to say, among other things, "Lynn, I want you to know I'm going to be all right. I will be okay, you don't need to worry about me. You really don't. I love you and I will miss you. I will never forget you. But I'm going to be okay. You...It's okay Lynn, good-bye." I thought she seemed distressed during the time "we" were talking; she seemed to want to say something, but would get out a word or two I couldn't quite understand, then fall into gibberish and trail off into slurry non-speech. I felt that she might want oxyugen, and it seemed that she said Yes, when the hospice nurse, a nun, asked her if she did. But I don't think they ever did put it on her.
Laurie-Ann, the hospice nurse, did tell me that Lynn was not in distress or discomfort, that she was simply in the process of dying and that this was what it looked like, that I shouldn't worry about her being in pain. It was true, she was not moaning or moving about as if in pain. In fact, she seemed less in pain now than she had for the last two years. She told everyone what to do if Lynn became "rattly" in her throat or very short of breath, but apparently that never happened. Everyone went to bed as usual, and she simply passed away when all were still asleep.
Now "mom" is dead (if you recall my essay for the word "mom" in my writing group, about Lynn). For years I've worried about this day, how it would happen, how I would feel or respond. I didn't think dying would take so long nor in the end that it woudl be, well, predicted almost to the hour. In fact, E, my visiting nurse, told me late that afternoon that once regular Cheyne-Stokes breathing sets in, the patient usually has only hours to live.
Cy is alive and sad but resigned. Better than I thought he would be after Lynn's death. Better I venture to say than he thought he would be after she died, though he would never admit that, feeling it might be a betrayal of her and his much avowed love for her. I think her lengthy illness -- here there is a break I will put elsewhere -- I think her lengthy illness gave him a chance to come to some sort of reconciliation with the idea of losing her, and some peace with the idea of being alone for the first time, probably, in his life (since he went from school to the war to Lynn's arms, if I have the chronolgy correct, or perhaps it was the war, school then Lynn... Yes, I think that is the order, though I do not know if more intervened).
As to the "lengthy illness" spoken of in the obituary...What illness did she die of? She did have emphysema, but I don't think she died of it. In the end, she wasn't even using oxygen to breath, wasn't wheezing or breathing hard or short of breath at all! I think she had breathing problems only when she was smoking! But the final 2 weeks, when she no longer remembered about smoking, her breathing was fine, and even when she was smoking, it wasn't all that terrrible. She used oxygen as an assist, but didn't absolutely need it the way some people do...Or maybe she did, I wasn't there often enough or long enough at a time to know. But she could go periods of time without it, so it wasn't essential for life at all times...
So she didn't die of emphysema. And she didn't die of pneumonia or temporal arteritis, two other illnesses she had had but had either recovered from, the first, or if not cured had under control, the second. She was not even taking prednisone any longer for whatever she needed it for, nor most of her other meds, probably because she was being given palliative care only. But what did she die of? I know, I know. No one dies of "old age" any longer. It is not allowed on the death certificate these days-- I hear that is official. The proximate cause was probably that her heart stopped, so they will call it a heart attack, most likely. But really, everyone dies because their heart stops. You can't die without that happening! My question is: WHY?
But of course, it is a question without an answer. She wanted to die. She got old and saw nothing left in a life that had no point, no pleasure, nothing she could do or enjoy as she formerly had...and so she died. Case closed. I suppose it was better than going on in pain and suffering, god knows. Why they can't simply say so on the certificate, that she died of old age, or even of failure to thrive, I do not know. It would be more honest...
Enough. It is nearly 3:30AM and I must go to sleep. So this is it for now. I cannot proofread or go through this and vet it for mistakes or for mis-anythings. Hopefully I have not made too many. I may be supposed to read a new poem about Lynn at the Ls home after the funeral on Sunday. Indeed I do have a poem, laborious written this past week on demand, a series of tankas -- Japanese short form of 31 syllables or fewer, sort of like the haiku but even lovelier (though not mine!) -- but I am not sure I want to read it. TO whom will I do so? Who will want to listen anyway? And why would they bother, after all that went on just before at the cemetery...I dunno. I just don't see it. I don't. I think it would be better to simply have the poem handed out or put in a pile for people to take when they leave either the Levine's house or somewhere, either then or during the week of sitting shiva.
In any event, here, for whatever good it does, is the poem. A few notes about it: Lynn and I met at folk dancing -- a group called "Always on Sunday" which she started and taught for many many years, specifically, we met when I was sneaking a cigarette and she came out to catch my second hand smoke, having quit due to emphysema but not really having ever quit mentally...I would wait for her at every hospital I was ever in, and she would always visit...She collected turtles, and indeed said she WAS a turtle herself, belonged to an online group of people that called themselves Turtles, (I considered them the Order of Turtles) because they loved turtles so much...She often had red-capped birds of some kind at her bird feeder, and her kitchen was an absolutely wonderful place for plants, which she claimed was the reason for her "green thumb" but I thought it was her sunny personality that grew the plants and people she loved so well...She loved Balkan folcdances and could still tap out the complicated rythms and it still pleased her to hear the music to the very end...I think that is about all you need to know to "get" this poem.
in memory of Lynn Levine 3/2008
my friend prepares a plate
pink with grilled salmon
setting out salt
I wonder if she remembers
we met dancing
“always on Sunday”
dancers join belts, hands
but she joins me
two clandestine smokers
in a hospital slouch
day burns on
my backache reminds me
she visits bearing
turtles, turtles! on sill and pot
she is a turtle
does a hard shell protect her
are her soft parts hidden
red-caps at the feeder
bamboo roots in a glass
under her thumb
this green kitchen sun
Balkan steps tax
she can still clap the rhythms
and one voice singing
her eyes laugh
in the garden
no one prunes the roses
grow lush pink frills
she breathed in
then out of this world
death is friend to the dying
far off the whistle
of a departing train
I can't say how grateful I was to Lynn's family today when they actually invited me to come over when the Hospice nurse came, just to hear what she had to say and take part in that gathering...It felt so good to be included, and to see Cy, who had been keeping a stiff upper lip with me, actually show how he truly felt. I do not want him to feel so terrible, but I knew he did -- his heart is broken -- and I felt terrible that he seemed to feel he could not share that with me until today. Though in fact, I guess he had done so on the phone several days before...Anyhow, I just, I just...Ah...it is so nearly over and I cannot bear it. The hospice nurse said Lynn's kidneys were no longer functioning, which meant she would probably pass away in 2 or 3 days. I never got to say good-bye and the last time I saw her that she was nearly conscious I forgot to kiss her or say I love you! Both things she always wanted from me!
I'm so tired, I'm SO tired. I had a splitting headache and vomiting all weekend, and it has passed today only because I could keep it at bay with Imitrex, but if I let up, I sense it will come back at any time...I dread tomorrow, waking up with it once again. I dread the next several days, wondering which one will be the one when the call will come...Oh, oh, Lynn was so important to me, I cannot tell you. She was always there for me, always only a phone call away from coming to pick me up to bring me to their house or visit me in some hospital...I never knew what a friend I had in her, never quite understood how much she truly did love me until two summers ago, when we began to talk as never before...For twenty years and more she had been there, loving me and supporting me, but it was then, two summers ago, that I finally understood it, felt the reality of it as I had not been able to before. Whether this was a result of my getting better, or something between us, or something different in her, I cannot say and will probably never know. But for me, though likely not for her, something profound changed...I knew, I understood, I felt what I had had all along in Lynn and in Cy: two people who had never needed or had any obligation to love or do anything for me but who had done both freely and unconditionally for a good part of my adult life.
I feel like I will never get over the coming loss, but it hasn't happened yet and so I console myself with the knowledge that maybe just maybe it won't. Maybe my need can keep her here, and help her get well after all. But I know that is foolish hope, and cruel even, for she wants to go, and has wanted to for months. If I were to keep her here, she would only suffer. So I need to let her go, and wish her well on her way, hard as that is, hard as it is...
I've written all I can write tonight. I am so tired. It is barely 8:30 but I am going to bed.
I dunno who saw the eclipse back in February but here in CT we had a completely unobstructed view and as it took place around 8:30pm-12am the timing was perfect too. Anyhow, watch it I did, starting at around 9:45 when things were really just getting going and the full moon had dwindled to a small crescent approaching totality. I had gone to the 11th floor, down from the 12th, to a window seat at the end of a deserted nonresidential hallway for a perfect place to view the eclipse, which happened to be right outside the window. I watched it steadily, almost without moving as the crescent moved into totality...What followed I described in a letter to my old psychiatrist (who happens to be an amateur but quite knowledgeable astronomer):
"First, I heard about an eclipse happening at around 9:30, so by the time I found a window I could look out of comfortably, there was only a small crescent of moonlight left, but enough to know that totality had not yet been reached. Knowing little more than the basics about eclipses, I was able to simply watch and experience, having no memories of seeing others, though I must have some time in my life...As the crescent grew smaller there was a lump on one side of bright light and a bright ring around the moon, then this too gradually disappeared. The moon went a flat-- note this, FLAT flaming orange for a brief time, and clouds seemed to pass over it, though the night was fair, then suddenly, there hung in the sky what I called the dead moon. The moon was hanging there, brick red and brown, round, NOT disk-like in the slightest, and dead, no light, and silent. DEAD. It was the strangest thing I’d ever seen, but insofar as it had been feared or revered but seen by humans for thousands of years, it was also beautiful.
Eventually, this process seemed to begin to reverse itself. The roundness disappeared when the flat flaming orange appeared again, with the strange clouds coming up to obscure the moon again. I expected the silver crescent would then appear on the opposite side in a while and the whole thing would be over (this was taking a long while, lt seemed a lot longer than a solar eclipse), when to my intense surprise and consternation, the dead red ball reappeared, hanging motionless in the sky amid once-hidden stars yet again . What? This was a surprise. Everything I knew about eclipses said that the proceeded seamlessly, from one phase through totality and out. Could it be that because the moon had two sides, somehow there were to be /two/ dead moon phases? Weird...Okay, I looked at my watch, It was 10:20 or so (somewhere around then-- I don’t recall exactly) and that was just about the time of totality, I later learned. So this dead moon was the RIGHT one. But what was the first dead moon? And was this to be the last?
This question would be answered soon enough, because after the wait for totality to end...or supposedly end, the orange flaming flatness came, and the cloudy blur, then...Yes, instead of the silver crescent on the opposite side from the first, the ball of silence appeared once again! THREE TIMES this rusty, brick red ball of a dead moon appeared after a period of flaming flatness. It was unmistakable and real, not some visual misperception. And it was NOTHING like what was shown on time lapse YouTube videos or astronomy site photographs. It scared the sh-- out of me. I ran upstairs and pounded out an email to the friend who had alerted me to the eclipse, asking her what was wrong with it...She never answered.
Back at the window I found Despina, a Greek woman, who barely knew what an eclipse was, let alone whether there was a period of three dead moons or only one...I asked her if she thought that thing out there was the moon or a UFO...I was no longer sure. I ran outside to take a closer look. It had to be the moon. I ran upstairs again to 11th floor North, the opposite hallway, and looked out their window.Finally, I saw the silver crescent, but it was on the /same side/ I’d first seen it on."
Now she took me seriously, which is more than I can say for Dr O, and she actually gave me the name of a friend of hers at NASA who is the eclipse expert, who she said would have the explanation. Well, he didn't, and sounded a bit annoyed with me for my imprecise language. Though he did go through a step by step analysis of my letters explainable points, he completely neglected the two major things that astounded me: the red dead moon and the flaming orange disk and their 3 times alternating phases...That was the whole point of the letter after all, which I had essentially copied to him, figuring it was the best explanation, the description I'd made at the time. Anyhow, I got no help from him at all, and Dr K has no other explanation...Though up till now she has been very sympathetic and certain there was one. Dunno what she now thinks. Dr O on the other hand, who I do not believe has much astronomical knowledge, just wrote it all off as a hypnogogic hallucination, the kind you have when you are about to fall asleep, esp if you have narcolepsy, though I was not in fact sleepy in the slightest. If I had been sleepy, Believe me I could not have sat there for two hours and simply gazed out the window. It would indeed have put me straight to sleep! But I was actually wide awake, enough to write a letter to a friend about the weird eclipse and to note the time on my watch and to count the times it did this weird thing and to note that I was noticing it, to take note of the fact that I was in fact noting it! (IF that makes any sense...I am sleepy now.)
I dunno what is going on...Some mighty weird things are, in fact, and that was just the start of them. I realized today that the person who had been filming us -- Lynnie and me -- two years ago, and then suddenly told us she lost some critical part of the tapes or something, something to do with something digital...and then suddenly gave up on it and dropped out of the picture entirely, she was LYING about it, and I realized that she and her People were up to something now...I dunno what They are doing -- through the cell tower above my apartment or high voltage lines nearby, but I know they are getting into my brain and doing things to me. What they want and why I don't...Oh god--
I've got to go to bed. This is what I woke up thinking about and now I'm going to bed thinking about it...
I don't know, frankly. No one, NO ONE, has ever died "on me"! Sure, my old boyfriend such as he was, died about 5 years ago, but we hadn't been friends for many years and I had refused to see him for the last several because I feared his judgmental attitude and its effect on my low self esteem (I couldn't afford another bruising...). So while I cried when I heard he had gone into Hospice, it was mostly generic, crying out of shock, and lasted only a few seconds...I always cry when I hear about someone dying, even a stranger! I did not truly grieve when he died, nor did I find myself missing him. After all, I had not seen him in years nor scarcely thought about him, except to resent him.
But today, when I saw Lynn only a few days -- three -- after my last visit, and saw how much she had deteriorated in such a short time, I understood why the Hospice nurse has begun instructing the family as to the "signs" along the way...Oh god, I'm going to cry even as I write this because of course I am not family and do not have the benefit of the hospice comfort and help with this process. (There. I sucked it up and "forgot" about it...and won't cry, I won't cry if it kills me!) I only have Leila, who tries to be there for me as much as she can, telling me secondhand what the Hospice nurse tells them...I don't like to bother Leila too much. After all, Lynn is her sister, the second one to die in two years and the only one left...After Lynn goes she will be all alone. The thought must be very distressing, but for the knowledge that she has K, her 30-years and counting partner.
I know Leila worries about me, but I can't burden her, try not to cry too much in her presence...The problem is that I am terrified to cry alone. I am afraid I will disappear, self-destruct, implode if I do so, and so I do everything in my power not to even think about anything sad when I'm by myself. Hence the art projects and writing and doing anything but letting myself dwell on Lynn's imminent death. Even now, I am writing about it, but not truly , not emotionally thinking about it, lest I feel it and the impending loss, the impending -- what? It isn't the loss itself that makes me cry really. It isn't -- I dunno what it is! But at the moment I refuse to go there. It isn't safe. Not alone, not late at night, not here in my apartment with no one to call or turn to!
So I will write of Lynn, but objectively, with some distance from any emotion I might feel. That is the only way to do it, and it is habitual at this point. Anything else and I could put myself in danger.
Today, Lynn seemed both more distracted or less in touch, and more restless and agitated, both apparently steps in the dying process according to the little hospice booklet Leila let me borrow. She seemed disoriented a lot, and unable to get through an entire sentence without forgetting the last word, which seemed to be unutterably frustrating for her. She kept saying, I want to go ---- but couldn't say where, or , to her husband, "Cy, will you get me ---?" but didn't know then what she wanted. He on the other hand insisted on finishing her sentences with what he wanted her to need or want, which was almost always either food or him! Sometimes she would assent, obviously too tired to disagree, but at other times she would get annoyed and under her breath say something clearly in that vein. Once, I heard her say, "Cy you are a pain in the butt!" but he didn't hear her and said, "Did you say you wanted some ice cream, Bubbe?" Resigned, she turned back towards him and nodded...I felt bad for her, but couldn't say anything in sympathy, because Cy was still there, and I didn't want to interfere between them. After all, she loves him as much as he loves her, and they have danced their dance for 61 years. If she doesn't know him by now, and how to handle him, I certainly shouldn't ...But in fact, she knows him pretty well, and will do what she needs to when she needs to. Right now, she is dealing with her needs and with his as she can and wants to. I will not interfere, no one should and no one does, though we all think Cy, in his grief, is making it be all about his needs not about hers.
I dedicated WE MAD CLIMB SHAKY LADDERS to Joe and to Lynn and Cy, and after writing acknowledgments all day yesterday, had 2 manuscripts spiral-bound with a cover I designed and printed out (just a makeshift one, but with a photo and title font etc). I made one for Cy and one for my father, who keeps saying he will not live to see my book published...Cy well may not, at 88, and his wife of 61 years dying. Dad has been saying he is going to die for 2 years now, yet he is still going strong. Of course, I don't want to contradict him now, lest I jinx things, which despite his predictions are going so well! And naturally, it's "just in case", too, since we do not know what 2008 will bring. But I hope that the bound ms is unnecessary in my father's case, and that in March 2009 I can hand him a real live book, so to speak, a published book of my poems, finally, 25 years after I wrote my first one.
Tomorrow is Karen's birthday. Instead of buying her a present, I offered to make her a cake, which she took me up on, since it spared her the expense of buying her usual chocolate mousse cake. I dunno how well it came out, though. The chocolate cake part may not be chocolate enough (though I followed the recipe fine) and it may be drier than she likes, though there is goo enough on both top and bottom to satisfy, that much I made sure of! It's a pudding cake, or is supposed to be, but it seems rather thin, one, and is made from cocoa rather than bakers chocolate, which doesn't bode well for the cake itself...Oh well, she said she'd take the risk and she'll have to deal with disappointment if my baking turns out to have been a bust! (Part of the problem is my new bakeware, nonstick but weirdly bigger than the usual standard pans and so sturdy they tell you to turn down the heat 25° from the one recommended! This means I have to adjust all the recipes by a half, and change the time I bake them as well...).
We are having her birthday party at Joe's of course. Which is fine with me, only I hope it doesn't go on too long as I don't do well with parties or with groups and there will be five of us! I dunno even who the other two will be, but I presume I'll have met them before at least once. Now, there will not be 5 chairs, no, and Karen will get one of them, naturally. She always does, pulling rank and saying she needs one, being "physically disabled"...So that means I will have to stand up the entire time. I will never get a chair, not with five people in the room. F-- me! Who am I to need a chair or want to sit down? F-- me altogether! Oh, god, I dread this completely. I may hand the cake to Karen tomorrow and beg off after all. I really do not see why I should go. It is not as if I'm going to be missed or even that I will be good company. I usually fight with Karen at her various parties, in fact. Because I do not want to be there, and because she ALWAYS makes me stand up the entire time because she and Gary "by right" get the chairs!
In fact, I think I will beg off. I can already feel a fight with Karen coming on, and I do not want to fight again, esp not in front of two other people, and I don't want to fight again at all. Joe is sick of it and I am sick of being treated like a second class citizen once more. I can't take it. I HATE visiting Joe with her! I HATE it! And unless it is absolutely necessary, I think I will refuse to do so. When we have to meet with T. L., about the speech generating device, I will go then. But not unless it is a matter of Joe's needing me. If it is only Karen's comfort and enjoyment we are talking about, well, F-- her. I will not do it. And she should be relieved, because it will be better for her, and she will have a better time without me there.
Do you know what else? She not only insists on having a chair, but when there is two chairs, she will take the only comfortable chair, even take it away from me if I am sitting in it. She claims it is "better for her back" but really it is simply padded and more comfortable and she wants it...So she gets it. And Joe will stand up for her not me, because he always does...But she is not working for him any longer so he doesn't need to, so why should he? Because he simply would take her side, I just know it. In fact, though, I need the padded chair more than she does. I have no padding on my back side, and she has way more than enough!!!!! I should say that to her. There is a perfectly good back on the folding chair, and any back is good enough back, but the folding chair hurts my pelvic bones and the decent chair does not. THat is what I will say to her, next time I am TOLD by her to give her the good chair....FFFFF------- her!!!!!!!
As you can see, I have not resolved my ambivalence and actual dislike of Karen, though in fact we "get along" okay at the moment, because I have not yet allowed myself to blow up at her. I also have not had to DO anything with her, or had much to DO with her. I do my thing and let her do hers, and if I talk to her, I keep it short and try to let it roll off my back when she says things that irk me. Or I try to tell her when she annoys me, rather than getting upset with her later and yelling at her later. That's a step in the right direction. But mostly I refuse to go places with her or do things with her...As for tomorrow, I KNEW she would insist on us taking my car to the hospital, as Gary and Karen ALWAYS do, making me spend all my money on gas and car expenses. So this time I parked in the distant lot, where they wouldn't see my car, and planned to tell them my car was in the shop...They couldn't know it was actually still there because they wouldn't see it in the usual lot. I just wanted them to have to take us in one of their cars for a change, even if it did mean they had to clear out a back seat for me (yes, I always have to sit in the back seat because Karen MUST have the front seat and Gary naturally as a male must too... are you beginning to get the picture? At the hotel at Lahey, it was the same thing: Karen got the bed and I got the cot...and it would ever be so. Why? Because Karen claimed that the cot was "too low" and she could not get up from it. But actually the cot was just a rollway bed and was just the same height as a bed...she simply wanted the comfort of a queen size bed, and didn't want to sleep in a single. Her comfort always comes first and she will do whatever it takes to secure the best for herself. F-- everyone else, and that meant including Joe.)
I think now you may be seeing part of what makes me so angry about Karen, her sense of personal entitlement and the way she simply grabs the best or asserts her disability in order to get it away from others, i.e. me. In fact, Josephine thinks she is neither so disabled or so helpless as she claims, only lazy and overweight, and that she could do much more than she does if she had to...She just does nothing because she gets away with it, and ditto the entitlement business re her "physical handicap." Arthritis? Since when has arthritis been so disabling that you need a handicapped sticker and are on complete and total disability, yet you walk without even a cane and drive and can get around everywhere. Maybe she can't climb stairs easily, though I think part of that is her weight and lack of exercise, and the force it places on her hips...She claims to have rheumatoid arthritis in her hands, yet she has NO deformities associated with RA, none at all, and when I couldn't cut up the rutabaga because I wasn't strong enough (she had said RA prevented her from doing so) lo and behold, she suddenly was quite capable of hacking it to pieces!
Argh! enough of this. I sound like a shrew, cutting HER to pieces. But I am sick of her, and her complaints and her entitled attitude and I will not go to her birthday party...She can have her cake and take it in HER car. I will see Joe alone on Friday...I would have seen him today, alas. But I was planning on seeing him Tuesday. Now I won't have seen him at all until then, but it can't be helped. In any event, I can't see him at all if I don't find some way to pay Josphine $25 for the ride, but I'm hoping someone will come through for that...Otherwise, I can't go even then. I simply do not have $25-$50/week to see him and I cannot drive that far on my own...What to do, what to do? I'd ask Lynnie, but she already pays for so much, or my parents do, and last month was SO expensive, with bills up the wazoo...I just don't know where the money for more rides is going to come from!
Enough is enough. And I'm tired and it is late, so forgive me if I don't proofread this for typos or infelicities of expression. Even Homer nods, and I ain't Homer, so what do you expect?
NOTE that you can click on any of these images to get a larger picture. SOme of you can click again to magnify details.
"The Decorated Betsy" is finished as far as I can finish her! I thought of decorating the chair and skirt but everyone said that would be overkill so I squashed my impulse and my overeager fingers and left them alone...Now, what to do with her, and with Yurtle the Turtle, who is also residing with me again, since Lynn and Cy are now sleeping in their living room, what with Lynn bedridden and needing the space and the living room stimulation and light and picture window...
I want to build another sculpture but I simply have no room for one, not without someone to store or hold onto my poor creatures....I do want to collect a number of them for a show eventually, but for now I'd lend them to anyone willing to hold them for me...Alas, I do not know very many people near me who want a person, decorated or not, taking up sitting space in their house! A turtle might be of more interest, but even there, who to ask?
Lynn was gone from her eyes for one visit, and i thought she was on her way out but good, though I also suspected it was somewhat willed, a way to force her body to exit...And indeed, by the following week she was "back" in her eyes, back as Lynn, recognizing people and speaking again, not willfully or willingly opting to opt out of living. She did tell me in no uncertain terms that she wanted to "go home". I replied that I knew, I knew, and I understood, but sometimes one's body took a while to get there. Eventually she would go home, but it might take a while longer. She nodded, seemed resigned, but clearly did not want it to be so. Still, last I had heard, she was refusing to eat yet when I visited on Friday, she was willing to be fed ice cream.
One poignant note about this sad affair is that now that she is staying in bed, conserving her energy and no longer smoking, her lungs are no longer being irritated and her body is under less stress. Which means she has more time to heal and grow stronger, if possible...All things that she actually does not want to happen. In some sense this horrifies me on her behalf, the irony of it, since I know how much she wants out; on the other hand, I keep hoping that if she actually were to feel better, maybe she would want to live a bit longer...
It is a difficult call. Luckily, I do not have to make it.
I wrote the dedication and the acknowledgments for my book today. I have titled it, firmly I believe, since everyone at the publishers seems to like it as much as I do: WE MAD CLIMB SHAKY LADDERS. It is coming along nicely and I am almost ready to finish it up and send in the final final copies for the editor to see. Then it will be out of my hands completely. It is hard to let go of it! Losing control of it, letting it fall lnto foreign hands, and giving it over to the "enemy" (!) feels threatening, even as I am aware that the publisher OUGHT to feel like a friend, not a foe, an ally of the best sort and not some sort of adversary who wants to get something from me without giving an inch...I dunno why I feel this way, or maybe I do. Since this endeavor began I have had NO encouragement from anyone at the press, only form letters delineating my tasks and my deadlines. Absolutely NO help or positive reinforcement from anyone. NOT even one word that indicated they care about my book in any particular way. Just business letters and what feels like demand after demand! I dunno why I continue to work with them. It is definitely NOT because I feel I could not be published elsewhere. I am virtually certain I could. But I admire this press, and its aim and ends...its non-profit nature. I just didn't bargain for this sort of personal feelings of attack and neglect....
Enough for now. I need to get back to my writing. I've been asked to write an "occasional poem" that is, a poem on the occasion of Lynn's expected funeral sometime in the near or far future. I need to find a subject. Occasional poems are not easy...Especially if you want them to be personal, as I do. But I will try my best, and if I can't do it, I will still have my "MOM" essay I edited that I can read in a pinch.