Actually, these lovely young women are my nieces, my brothers’ daughters, and I scarcely do them justice here. But rather than their appearances singly, it is the wonderful and loving relationship that I aimed to show more than anything else. Their mutual devotion is so very clear, the younger Adriane on the right and her older sister Claire on the left. I think the photo that this drawing was taken from is surely one of the most delightful I have seen, at least in terms of any recent photo of my extended family.
I am aware of the misalignment of the eyes and of other faults large and small, but to me it is the expression of love and affection between the girls that is much more important than these imperfections (plus, frankly, I have to admit I ruined the original portrait entirely trying to “fix” it, trying to “perfect” the placement of those eyes..I ought to have known better.)
This is the first time I have tried to do a truly realistic pencil portrait, and I guess for the first attempt it is okay, but I can see only the flaws in it! I have been informed that this image may have been taken from a copyrighted photo, so I may have to take it down. But for now, I assume that I have few enough readers that no one will object to my exhibiting such an amateurish attempt, and one done purely for my own pleasure as well self-training!
Here is a colored pencil nighttime interior, wholly imagined and done without model objects to work from except that the red chair happens to be one that “lives” in my room. You may not be able to tell, but the large mirror on the table reflects one that is meant to be implicit behind the person drawing (the hand in the foreground) which in turn reflects the one on the table, and that reflects it, and so on…). Also, on the table is a photo that purports also to be, and is in fact, one of the artist — me — drawing as well. So you see there are a lot of tricks involved, though I do not think the picture is very expert. The perspective was not meant to be accurate, by the way. It is sorta folky…I simply am trying things I have never done before, like furniture and scenes. After all, you have to start somewhere.
I am also working on learning “realistic pencil portrait drawing” which is equally difficult but in a different way as it involves minute observation and challenges my eyesight too, at least at the moment. In fact, learning both skills are good for me.
I wrote a new poem two nights ago, but alas, I cannot share it here yet as then I could not submit it to a journal. I can only advise those interested in my poetry who have not read it and who have not seen my book WE MAD CLIMB SHAKY LADDERS, to check out the page I have set up (see above) with a number of poems taken from it. I you like those you may also be interested enough to perhaps purchase a copy (and make me a wealthy — hah! — woman in the process). I am hoping eventually to find a publisher for LEARNING TO SEE IN THREE DIMENSIONS, but I admit that I haven’t really tried. In fact, I have been so busy that I haven’t tried at all! I just keep writing and adding to it.
Anyhow, I do not know how many of you know of my best friend, Joe C, (the old blog readers did) but he is dying of ALS, Lou Gehrig’s Disease, after 4 years, 3.5 of them approximately, on a ventilator ( that is to say breathing by means of a tracheostomy tube attached to a mechanical respirator). I do not know how long he has, though the situation is really dire in a way that is difficult to talk about. He refuses to agree to a Do Not Resuscitate (DNR) order, though there is nothing they will be able to do for him except torture him if he does not…Oh god, he is in such awful straits, yet so wants to live! It is so tragic… The only good thing right now is that Dr O, that wonderful woman and my former psychiatrist, who was so kind and helpful to him, and of course was to me for so many years, was ordained a minister after she moved away from CT and she is going to visit him tomorrow, if she can…and see if she can help him.
You know, my absolutely biggest fear for Joe is not his dying, but of his being afraid, and that is where I think she can talk to him in a way that he will profit from, because he listens to her, and always has, in a way that he never has listened to me.
Joe basically responds best to female authority figures, which is strange given that he has a terrible relationship, really none at this point, with his mother. I no longer mind this, I am used to his not taking what I say as having any merit. But if Dr O is able to help, I just want him to get to that place where he can accept his approaching death and is not scared…
All this is by way of saying that if I am silent here for a while, please think of Joe and of me, and send him your prayers? Thank you, all of you.
I am putting up a photo Joe and me just after he was diagnosed, when we were at the Lahey Clinic for one of his appointments there, and then one of the few that I have with him at the hospital where he currently lives. One when he was still able to smile. You will be able to see the extreme changes in him, but to me, I have always only seen the “same ole Joe!”
Joe C and Pam in 2006, DecemberJoe and Pam November 2007
Okay, here are some more “interiors” of various sorts and with varying success. I tend to use mirrors and windows to say something, but what I have no idea. In any event, the entire picture has not always made it into the photo, but if it has, then you must look carefully at the details sometimes to figure out what is really going on…
Curled Woman on Chaise
Interior #2, above
Interior #3: Red Futon with LaundryInterior #5: Moving Day Unable to Move
Person at lower left is seen from above and behind — weird perspective in entire picture. The rest must be deciphered by viewer! 8)
Interior #6: Medicine Chest and Ambivalent Husband
You have to look at the details of this carefully, if you can see them. The man in the mirror is not exactly as harmless as his electric razor would have him seem. Clue: check out other mirror at upper right!
Don't throw stones at Glass Houses
Alas, my pile of stones does not look too much like stones but the glass houses are both the terrarium and the fish bowl, but also the conservatory seen through the center door. Note the figure coming in the other door (seen in the right hand mirror) and the artist herself in the round mirror — if you can make her out!
Natchaug Hospital Nursing Station
Done in watercolor paper on crude sketch paper but a copy on card stock given to the nurses…
And there were more but that is it for now.
Check out two posts below if you have not seen them as all three of these were posted tonight!
First, before I start my post today, I wanted to share my newest artwork, which is a colored pencil “painting” of a woman who lives in my building, whom I will call Rose. She did not ask me to paint her; she was simply someone who sits quietly for many hours in the community room, and so was a good subject for a portrait, and a photo. I also happen to find her a very agreeable person, one of the nicer ones here (most are gossips and backbiters, or if not most, then the most vociferous and visible of the residents). I think she will be quite pleased with how it turned out, so long as she does not expect anything but a portrait that is faithful to life, rather than an idealized one. I believe, however, that Rose is very down to earth and knows what she looks like, and will appreciate what I have painted.
Rose, intent on her needleworkRose intent on rugmakingRose comparison of painting with photo
Now I want to discuss, yet again, the use of restraints in Connecticut psychiatric units, particularly as it pertains to my treatment there. As I recall, I have not gone into much detail about the last hospital stay, back in April and May, largely I think because it again was so traumatic and in many ways similar to the previous one, that I could not bear to contemplate it.
However, as very little as I recall, I do remember more of the stay than the complete amnesia I still experience for the stay in Manchester, back in October or November of 2009. When I say I have a loss of memory with regards to this other hospital stay in the spring of 2010– in Middletown — I meant it more for the specifics of certain episodes. And for any of the people there who staffed the unit. (Except for Christabel the OT). With regard to much that occurred I believe a lot could be brought back to me, under the right circumstances. I do, for instance, continue to have an overall memory of what the place looks like and where my room was and some details about what happened. What I do not, and did not remember, not even the next day, was most of what precipitated the use of restraints and seclusion during this stay. Or at least, of the two or three incidents of S and R two are jumbled together, so that it takes some mental probing for me to straighten out any of it. but one incident remains too clear in my mind for comfort though even at the time, or immediately afterward, as well as now, I have no idea what was the actual precipitant.
Anyhow, what I recall of that episode is this: I had been taken off Geodon, which I took regularly with my Abilify up till then, both in order to boost its antipsychotic properties as well as to temper any Abilify-induced irritability. The irritability was physical as much as mental — and with the resultant tendency to get into verbal fights and arguments with anyone who, as my mother used to put it, looked at me crosswise. I have no idea why they did this, took me off Geodon, given that I know I explained the rationale for the use of two antipsychotics. But many MDs seem to find this objectionable, however effective. Perhaps they considered the 20mg Zyprexa, which they had talked me into taking on an acute basis, would be an adequate substitute for the calming effect of the Geodon. They had wanted to stop the Abilify, too, using Metformin, a diabetes drug, for weight control, but I had insisted on taking it both in an effort to combat Zyprexa’s tendency to cause weight gain, but also because I believe that it is the Abilify that has so massively enhanced my creativity.
So there I was, on Abilify untempered by Geodon, and taking Zyprexa, which induces its own “upsetness” when my weight invariably increases…I assume that I must have been hostile, loud, and disruptive, for I do not know why else they would have made me go into the seclusion room. I do remember that I could not calm down, and that in the flimsy johnnies they had clothed me in, I was freezing, so that even when the nurse doing constant observation told me to lie down and rest, I was unable to do so for all my shivering. I begged for a blanket, but no deal. I pulled the entire bare mattress over me as a covering. Well, this was apparently seen as a self-destructive act, or something, as immediately they pulled it off me and dragged the mattress itself from the room. Now I had nothing for warmth, except my own anger at having been treated in such a fashion.
I remember that I was yelling a lot, and that I wouldn’t lie down on the cold linoleum and “calm myself.” No, I wanted to talk, and begged the nurse to do so. Instead, she only turned away and told me again to lie down on the floor. Well, this enraged me, and I went to the door to complain again. She said nothing, only stood in front of the open door so that I could not leave. Finally, getting no response, and still anxious and “het up” I suppose you could say, or over-activated by the Abilify, I tried to push my way through her into the opening. Immediately two “guards” pushed me back into the room. I yelled at them, and pushed back. One of them asked me what was wrong with me, why I didn’t just ask to talk with the nurses instead of resisting physically…I looked at him and said that I did ask to talk, and she refused. He seemed somewhat surprised by that. Nevertheless, he ordered me to go back into the room and lie down.
I was having none of this dictatorial behavior on their part, and as I recall, at one point — no, I do not remember what happened. I only know that suddenly the guards were on top of me, and one had pinned my arms behind my back and was pushing my face into the linoleum floor. It was as if I were a recalcitrant inmate of a prison and this was a cell “take-down.” I was hurt and I was furious.
When they let me up (and why they had pinned me to the ground I have no recollection, only that when they let me up, I was finally allowed to talk to the nurse nad stand out in the hall with her. I heard some talking behind my back and a commotion, followed by feet going down the hall away from us. I had a bad feeling about it, and asked the nurse, “What are they doing?” She responded, ominously, “They are preparing a bed for you.” “a bed? what sort of bed? She remained silent and I understood that they were putting restraints on my bed…”You can’t restrain me, I am out here calmly talking to you. You haven’t even offered me a PRN and I will tell you now that I would be more than willing to take one. But I am NOT a danger to myself or others, and you cannot legally put me in restraints.” The nurse continued to remain silent. My heart began to race. I called down the hall, “I will not let you use restraints on me, I am calm and this is not allowed.”
Some of the staff approached me and told me to come down to my bed room with them. I complied, because I knew that if I didn’t they would have some reason to say I “deserved” to be restrained. When I got to the room, I found I had been correct: there on my bed were the straps and shackles of four-point restraints, attached to the bed frame.
“I am calm and I am not a danger to myself or others,” I carefully declared. I will take medication and I do not need restraints.”
“Lie down on the bed, Pamela” someone told me. I refused, saying that this was punishment pure and simple and that they had no cause to do this nor any legal right. “I will ask you one more time to lie down on the bed, Pam, or the security team will help you do so.”
At this point, I understood that they were going to use this form of discipline on me no matter what I did. That they were out to get revenge and that they would use any excuse to excuse such measures. So if I “made” them force me into the restraints, that would by itself prove that I “deserved” them. So, more humiliated than I believe I have ever been in my life, I sat down on the bed, then lay down on my back and said out loud, “I am now placing my limbs into four-point restraints, and I want a record of the fact that I am calm and not resisting and that I have asked for a PRN instead.”
It was no use, though, as they went ahead and shackled me, then left me alone in the room, except for a staff member monitoring me through the door, left partially ajar. My heart was racing with rage, and I could feel the pain of such profound humiliation surging through me. But I did and said nothing, I think, because I was going to prove to them that the drastic measures and punishment they had inflicted on me was WRONG. After about an hour and a half someone came back and let me out. I was neither compliant now, nor placated and as soon as I was free and out of that room, I let it be known, loudly that I intended to file a complaint. But no one said a thing, no even spoke to me the rest of the night…
THAT is what I remain so traumatized by, at least with respect to this time: the utter humiliation of what you might call “cutting my own switch,” along with the clear understanding — even mutual acknowledgment — that they were punishing me.
This continues to preoccupy me, that is when I allow myself to think about it, or when I continue to try to read the records of that stay, which records I only a week ago obtained (having sent for them many weeks ago…). I cannot help but re-experience the same brutality and the same extreme and exquisite humiliation, and once again it hurts beyond belief. The worst thing perhaps is that when I told my family about what the staff had done to me they didn’t come to my support, they didn’t unconditionally defend me. They didn’t even seem to care, or to believe, that I had done nothing to “deserve” four-point restraints (as if anyone deserves them). Another family would have automatically come to their member’s defense and declare that NO one deserves such brutality, and that as their family member I should never have been treated that way. Another family would have done –oh forget it! No, my family is always so eager to please the staff and to believe that I am in the ‘wrong” at these hospitals, to believe that I am at fault, (this is the story of my life!) that they simply told me I must have caused their use of such brutal methods of control by my own behavior, I surely deserved it, and besides “what else could they do?” Shackling me, calm and rational, me to a bed was clearly the only option and entirely justified…So much for MY family’s loyalty and compassionate support, huh?
Well, bitterness solves nothing, so I won’t dwell on the last subject, but I will say that if I can, I intend to file an unoffical complaint, or barring that, an official one. The problem with the latter is that I will not then be able to confront my persecutors. whereas if I did so unofficially, it might yet be possible, if only to avoid a messy public affair. After all, I could easily write something…No, I won’t go there. For now, I only wanted to describe what continues to occur at Connecticut psychiatric units, despite the regulations and general disavowal of the use of cruelty in the treatment of those with mental illness. It still goes on, it just happens behind the closed doors of the hospital and the continued use pf seclusion and restraints as discipline and as a salve for frustration, depends on the assumption that no patient will bother, after the fact of discharge, to do anything about it, except try to forget.
Things are better than this, but do not feel it!Note the linoleum and bare mattress. I have never seen a windowed seclusion room!
My newest artwork is what I call The Painted Woman, for I think obvious reasons.
The Painted Woman, in all her glory
It is not meant to be a parody or an insult to any sort of woman, just a study of an overly made-up “older” woman who might drink a bit too much and get loose around the edges when she does. I think it is clear that she has had plastic surgery, though it hasn’t done a lot for her, with her artificially plumped lips, which do not work at all with her boozy aged face that the exaggerated make-up only serves to enhance in the worst sense of the word. If her botoxed brow doesn’t disguise her real age, neither do her drawn-in eyebrows, which is something women do that I never did understand: Isn’t any sort of eyebrow better than the kind that are just a line drawn or painted on? even Frida Kahlo’s eyebrows!
Frida Kahlo, with her eyebrows, of which she was NOT ashamed...She was proud to paint them and did so without shame or trying to disguise them. In fact, she even painted herself with the mustache...
I love those eyebrows, full of character and strength, and the portraits, which could be seen as brave and wonderfully lacking in vanity, I prefer to think Kahlo painted because she saw herself simply as beautiful, eyebrows and mustache and all, and painted herself on that account, not at all “in spite of” her flaws…
That said, I do not believe that my painted woman is beautiful, perhaps for much the same reason that I hope Kahlo felt herself to indeed be beautiful: this, my pictured woman, is not only artificial, she is desperate, pathetic and even tragic…I feel sorry for her, who is, after all, my own creation!
All that aside, the reasons that I have not written are several, including my having to get that poetry book manuscript rewritten and out by the 15th of October (not that I have a chance to win a contest that is judged non-anonymously, but it does no harm to try, so long as it doesn’t tie the book up for the next 6 months…). Then I had that Life Drawing class at the Creative Arts Workshop, which is still difficult for me, partly because I cannot see well, and cannot translate what I see to a large piece of paper on an easel…I don’t have any difficulty with the gestural drawing, the loosening up exercises, actually, I have more difficulty with the longer drawing periods. The trouble is that I do not want to take the time to do a drawing for only 30 minutes that I know I cannot do in that short a “long” period, and also, I find it hard to stand on my feet for that long. The class is 3 hours long in fact, and all of it is standing at easels, while when I do my portraits I mostly just sit in my recliner or at a table with my paints and canvas on a table or at most at a little broken table easel that I bought at the CAW tag sale and fixed myself.
Nevertheless, it has been a good experience, if exhausting. I drive to New Haven then stay overnight and drive home on Tuesday morning. So the night spent away from home feels like a big deal every week, not just a mere evening away…though I could treat it as such, I suppose.
ALSO, Dr C wants to see me twice a week for the time being — actually for more than just “the time being.” It is a very complicated situation that I cannot go into here, but this 2X a week set-up may not continue, I dunno, I would like to, and I know it kept me out of the hospital in October, but but but…I am simply getting very mixed messages from certain people (decidedly not Dr C) about it, and it is hard to know what to do. I sometimes think that it was easier for people to have me in the hospital twice a year, despite their protestations, than to keep me out if keeping me out entails my seeing Dr C 2X a week. It is certainly less expensive to hospitalize me, since it saves money coming out of their pockets ( I am not a drain on the “system” otherwise, because I do not need public mental health services or ask for anything from those strained agencies, for which fact they ought to be grateful…though not for my hospital stays, of course).
But no more on that subject, which is utterly confusing to me and frightening to boot. I cannot bear the thought of ever being forced into a hospital again, where I am ALWAYS ABUSED and BATTERED by the staff, despite being tortured by myself and my own demons already. Even thinking about it makes me tremble…
Will be returning to Wisdom House in two weeks, for another weekend. I hope to write some more poetry, and perhaps “fix” the ms, by writing up an introduction and putting in some divisions between groups of poems, rather than the vague segues I have now. I thought they were obvious, but others do not seem to “get” why one poems transitions to another…So I will group them better, and put what feels like artificial divisions between them. That way, readers will feel there is some shape to the book, a clumping, rather than a thread that one must follow…
There is much I would like to say, but it is already 2:45 in the morning, so I needs must cease and desist and get to bed. I will try to write as soon as I can, but if nothing else, I promise to write when I am at Wisdom House on the 19-21 of November.
The following is a poem I wrote last year, and put one version here then, after I went to a vigil for the organization 350.org, a website devoted to the cause of getting our atmospheric CO2 levels down to 350 parts per million, because that is the level at which life continues to be possible…whereas if we continue to let it go up, global warming will continue to such an extent that life on the planet will be impossible.
But that said, here is the poem, for what it is worth. If it sounds familiar, it is, but I have also reworked and changed a lot of it…
FRIDAY NIGHT VIGIL
Shivering in the wind, we fight to light our candles
as we gather in the darkness of an approaching storm.
But the icy blow keeps snuffing out each flicker
so we just stand, our signs alone aloft to passing traffic,
standing for the stand we take: for the changing world,
for a last chance at change. We smiling stand for photos,
taken from across the streaming street –
and smile into the night, display our handmade signs.
One car beeps, a driver gives the V-sign in support.
But most drive on without a single word or sign
that they have heard or seen a thing, or even recognized
we’re standing here for something save a hopeless cause.
My hands freeze stiff, release their glass and candle with a crash,
a glint of shards, a splash upon the sidewalk. Someone
with safer gloves stoops to sweep the shards away…
I think, How lovely is the world today, even dying.
Though it’s all we have (and lord knows, it’s more
than we can handle) we stand here in this freezing dark
against the darkness and light one candle.
I’m much too tired and drained to write right now, but I wanted to post this first study of my next painting, which will be titled, well, as the post is, The Ogre that Ate Manhattan. For those of you who have read this blog for a while, you will understand that I refer to myself. The study posted here is very different from what I envision will be the finished version, but I was just practicing ogres and buildings etc. The medium, by the way, is colored pencil, except for the blue background, which is acrylic.
This is how the final version of the unfinished sketch that I posted below finally turned out. I managed to print out the photo of the sketch using a photosmart inkjet printer and watercolor paper, spray that with fixative so the ink wouldn’t smudge under erasures, then draw on top of it as if it were indeed my original sketch. In such a fashion, I was able to re-complete it “better” as it were than the original “wrecked” version. And indeed, I believe it is a great deal better than the version as shown below, for all that it is a complicated combination of photographic print-out of the original sketch, combined with an overlaid color pencil drawing. The strange thing is that in the end, because of the rather poor quality of the original sketch-photograph, the background came out this dull, slightly green color (due to the lighting, not the paper it was on, which was actually white. Nevertheless, it turned out to be a perfect background for the finished drawing, and so I did nothing in the end but finish the portrait against that greenish background.
A technique I am learning/teaching myself is one I thought I would never understand, let alone be able to do and that is how to do a kind of underpainting of whites or light colors, the highlights, before adding the darker tones. I do not know, of course, if one is actually supposed to do that with colored pencils, but I did so anyway, figuring it might be time to try it. So given the original sketch to work with, I then heavily applied light peach and white tones where you can now see the lighter areas on the face, and only much later softened them with the darker chestnut browns and darker umbers, though clearly much peach shows through where the light is meant to strike the face on the left.
A “real artist” would know how to do this beforehand, I expect, but I had to learn as I went, so it was all a process of delightful discovery, which is why I hope you will forgive me the foregoing description. It always amazes me to find out how many colors there really are in what seems to be a solid colored expanse, when you really look at it. I used blues and greens in Sophronsie’s skin tones as well as the peach-tones and whites. There are also some yellows and reds. And in some places I even used a silver pencil. It took me a while before I could even understand that the whites of the eyes are not white at all, not even slightly blue all over, but all sorts of colors, and that only if you painted them in a kind of pale multi-color would they begin to seem realistic. What is also interesting is that comparing the “white” skin on the child that I did in the earlier picture, or any of the other “white” portraits compared to the African American portraits, there is really not a great deal of difference in the colors I used. In fact, I start out with the very same peach and white for both skin colors, and only towards the end does this change, when I add darker tones for the darker skin, but it really only takes a little, and then not a great deal. This is so striking because it seems to say, in some profound way, that when you really look at all of us, “under the skin” (which skin people take for being so different) we really are all the same. Of course in every real sense we are the same, despite our differences as individual human beings: genetically this is true, and philosophically, and morally and spiritually and in every other sense that matters, at least to me. We are all human and of the same “stuff” and nothing else matters. Nothing.
__________________________________
(There are not supposed to be any gaps in the following poem but for some reason it doesn’t cut and paste as it should and so it appears with the spaces…ignore them..)
HOW CAN YOU EVEN THINK SUCH A THING?
There’s no excuse for it, I know, there’s none at all, but reading
about the death of the famous poet’s poet wife from cancer,
so cachectic and etiolated her limbs are thinner than a Giacometti
I find myself disgustingly hungry and envious, both.
It is not that I want to die, not even slowly, not even
an after-the-fact-romantic death recalled for years
by other poets. No, I like life, I even like living.
But I want this house, yes, I want this small empty apartment
filled with food rich and fattening as truffles, dark, creamy truffles
made of French chocolate and wrapped in tissue-thin edible gold
so expensive it’s a mortal sin to eat even one as long
as Africa starves and cholera saps the strength of flood victims
in Pakistan. Except that leaving them to melt and flow molten
on the August windowsill feeds no one while I, longing,
linger over my dish of celery and one small onion, lusting
to taste a life I can never enjoy, to taste a lust not for chocolate
exactly, but for the life that rich chocolate represents,
appetite throwing wide its arms and crying, Yes, yes, yes!
I hope I am not encroaching on Sr Jo-Ann Iannotti’s copyright, by sharing this photo, but if I am I trust she will let me know. In any event, this is one of hers and it is everywhere at Wisdom House. I believe it is a beautiful example (if that is the proper word for it) of the spirit of Wisdom House. Of course, the physical labyrinth, is stunning by itself, but somehow this photo captures the experience of walking it and the process of meditating and “being there” in a way that mere words describing likely could not. Surely, if nothing else, this photo alone is a wonderful way to “advertise” Wisdom House, if it ever needed such a thing. If you can, visit http://www.wisdomhouse.org and look at the virtual tour photo gallery. That way, you will get a good idea of what the place looks like, and perhaps get something of the flavor of people’s first impression. I know that even the first time I came here, despite my misery concerning all that silence, I knew it was a special place…
Jo-Ann says she has no idea who the woman in the labyrinth center is, that it was a fortuitous shot and nothing more. Frankly, though, I suspect getting the photo took more than mere luck, even just to have been there to capture it! It exquisitely represents both the spirituality of this place as well as peace and peacefulness.
Clearly, you can tell where I am: at Wisdom House again, having a good time this time. I only wish I did not have to depart tomorrow.Even though I spend most of my time alone, the mere presence of other people, laughing and talking and obviously having a great time, buoys my own spirits and makes me laugh aloud myself. I think it is great that they are laughing so uproariously, and it is great to see everyone with their doors wide open, people, women my age, sitting on each other’s beds, gabbing like college girls. The lovely thing too, about Wisdom House in general is the absolute faith in people’s basic trustworthiness: NO one has a key to their rooms, and no one seems to feel worried about anyone entering or stealing a thing. I frequently leave my computer and writing equipment right out in the open on the sun porch, without the least qualm, feeling secure in the knowledge that everything will be just as I left it when I return. Indeed, the sense of trust that I know Jo-Ann has in people is infectious, and I somehow know that everyone who comes here is trustworthy at least for as long as they are here, even if they might not be all the time when they are not.
Now, I may be naive, but I too have been known to be overly trusting, and I think that is a better option than not trusting people. At the same time, though, I can be extremely paranoid as you know, and I do mean “at the same time…” I suppose that is difficult to comprehend: I will simultaneously give away whatever I can, if I feel I own too much and yet also feel as if people are secretly stealing from me, taking things I need out from under me, without even asking or telling me, which makes me angry, because I am already generous, and never ask for a single thing in return, but I’m sorry and feel bad to admit it, but somethings I am not ready to simply have things taken from me without my say so! I feel guilty about this, though, as if I am so attached to material things that I cannot part with something that someone else needs more than I do (for why else would someone resort to stealing it???). Why do I need to be so attached to anything, that is, to any mere object? It will never save your life or your soul!
I am drifting though…forgive me.
One great thing about this weekend here is that despite my having slept till noon today (after spending several days before last night with very little sleep, and even last night beginning to fear for my brain and my sanity due to sleeplessness as I was up till 4am involuntarily) I have pretty much gotten the book organized and put together. Now, that means only that I have made the organizational decisions, which is the major part of the problem. But I needs must (!) still go through the actual computer manuscript and change it, to make it conform to these editorial decisions. Not extremely difficult, just time consuming. At the same time, certain poems need editing and some rewriting/fixing. This I enjoy, the perfecting of the lines I don’t feel are quite right yet, but it takes time and energy. (I even have a two relatively new poems to add!) Alas, I will not be able to come up here to take the time for myself to do nothing else. Too bad, as it has been very convenient and much more than that. It has been, well, useful in the sense that I have been productive “to the max,” able to say NO to email and phone calls, not even walking with Diane L or doing laundry or cleaning or shopping, just writing all day. I suppose taking my usual 2 miles walk would be a good thing, but for just a weekend here, I would rather not…And although I brought art supplies just in case, I haven’t even taken out my sketch book, that is how good the writing, and the editing, have been going!
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Speaking of the labyrinth at Wisdom House as I did at the top of the post, let me segue into a few words about paranoia: I have not walked the labyrinth, nor even approached it. The closest I have come is to sit at the top of the stairs looking down at it relatively from afar. The very idea of “doing it” makes me feel both rather shy and then scared to do so. I am in fact scare that God might strike me down, should I have such temerity as to try it. I am also squeamish, not sure I could relax and not feel paranoid, not feel so much on display that I could not concentrate or let myself be “unaware of being observed” — whether I am in fact under observation or not.
That of course is the essence of paranoia: it matters not a fig whether something is really happening, it matters not another fig if someone’s really after you or really against you: if you feel it, if your amygdala is working overtime to generate that feeling, the intense feeling of fear that it is meant to generate, well, that’s it. That is how you are going to feel. And “the feeling is primary.” That’s what Dr O told me time and time again. You feel the fear first, and primarily, and then the story or reason for feeling it attaches to it. But if the fear gets entrenched or doesn’t go away, the story,, that is, the brain’s explanation for the feelings of fear only gets more entrenched, because how else can you deal with fear? It is extremely difficult to feel fear unmitigated without somehow understanding it as coming from somewhere, or being stimulated by something, having a cause or reason. The brain always wants to make sense of things, and it does this whether one “wants to” or not.
So even though I am aware of what paranoia is, I have never been able to control my thoughts when it is happening. It is only after the fact that I can, now, sometimes, look back on a difficult situation and with a clearer head understand how I might in fact have been paranoid in my behavior due to my fear- induced understanding of what was going on. It is very very difficult to override such feelings, esp on such a fundamental level.
I wish I could write more now, but I’d better to get back to my writing before I have to get back to sleep. As it is, it is 1:50 A.M. and we — Ann W drove here with me — the other fellowship person — have to drive home tomorrow around noon. I wish dearly it were not so, but there you have it. For now, I will leave you with a poem that will go into the manuscript of my second book of poems, which I call at least for now (several people have been enthusiastic about the title, except my father), LEARNING TO SEE IN THREE DIMENSIONS. I share it with you now, because while still unpublished, I do not think I will seek publication for it elsewhere, separately…The first one, for my old (and former, but possibly dead now) friend Roland, was previously published, but in a much different version. I apologize if the lines come out with large spaces between them, but the cut and pasting function never seems to allow single spaces… OR stanzas for that matter, as this poem was originally broken up inot five different stanzas but now appears to be in only one long one… The second poem is about Joe, and describes my own encounter with fear of botulism, which has similar symptoms to ALS — so I feared — and my nostalgia for his voice, which I will never hear again, except on his answering machine, and on one or two micro-cassette tapes we made some years ago…
FOR A FRIEND SUCCUMBING TO AIDS, 1980s
For Roland
This could be your whole life,
thumbing a ride to wherever the cars are going,
the casual, tossed out hellos and good-byes
that turn around the axle of your quick life —
that far, just that far, and then you will stay,
forcing a stranger’s town into the shape of home.
Yet you’ve lived a dozen lives — in the Keys
with the one you finally loved, in western Portugal,
Nova Scotia. Last year, already marked, you spent
the winter in your bed,which just fit in a backyard shed
in Vernon, Connecticut. And there was a life
to accommodate each place, its sweetness and pain.
When we met, you taught me the local architecture,
the difference between Georgian and Greek Revival,
and you thanked me for the poems you gave me.
Then you called late one night, drunk enough to over-
dose. Thoughtlessly, I rescued you, a dying man…
You never forgave nor spoke to me again.
Now once in a while a car slows, pondering
your beard, your emaciation, the known and unknown
risks, sees you finally, and explodes away from the shoulder
where you stand, all its doors locked simultaneously
against those Kaposi’s inflorescences that stain
your dying…Roland, Roland, don’t you know
we all die in shame and alone? We die, perhaps,
not far from home, or perhaps, like you, wandering,
Most recent drawing: a portrait (from photo) of Josephine’s niece, done as a thank you to her brother, Megan’s father, who helped me out removing and moving in a recliner chair this spring. Nothing particularly “artistic” about it, just a simple likeness…
Unfortunately, while I loved this stage of the drawing, as I progressed I fear I ruined it…Or at any rate, it changed so drastically that I don’t know what to do with it, or where to go with it now. So I am putting what I have aside, since I no longer have this, to work on some other time. I wish I had taken a better photo of it at this stage, though. Anyhow, for what it is worth. Here she is, as she was…
Elder with Flaming City in Mouth
Then this is the more updated drawing as it got “over-processed.” Actually, what happened was that the watercolor paper did in fact start to wear out under my many erasures, or at any rate the color, the pigment grew so thick that when I erased it piled up under the eraser so that I had to keep erasing more and more of the drawing each time in order simply to erase one spot, because I’d otherwise leave behind chunks of unsightly “solid waste” of clumpy pigment. Eventually I couldn’t even draw on the paper any longer, it had become so mushy under that burden of erasure and redrawings, and so I decided to finally be done with it and decided quickly to do what the erasing suddenly brought to mind: an upside down city-scape, somewhat surreal, floating in the person’s mouth, and on fire…Do not ask me why! It is simply because that is what I “saw” in the patterns left behind by the unerased and uneraseable lines and colors on the paper…
TO tell the truth, I am trying to figure out how to either redo or “fix it” into something that I can work with further, can figure out what to do with as is, or how to cover up without making it look “collaged together, since that was not the effect I started out looking for. I’m eager for suggestions if anyone has any!
And yes, I came back from Wisdom House yesterday, after 2 and a half days instead of 7…I was rather upset there, though the place was lovely and I thought that if the circumstances had been a little bit different I could have loved it…but I will write more tomorrow or today in the P.M. For now, I just wanted to let you know…
I have decided, with Sr Jo-Ann’s help, to arrive at the Writer’s Fellowship on Sunday morning, rather than Saturday evening, so that she can meet me, rather than have me face a crowd of fifty (silent) people alone. It was in fact her idea, but she offered to take me individually on a tour, and show me where to go and so forth, introduce me, which she thought she would have more time for on Sunday morning than on Saturday when everyone else was arriving. This also was a relief for the simple fact that I am so frantic with things I have to get done that it helps to know I have all of Saturday simply to relax and if I haven’t done so before, to pack. It isn’t as if I am bringing a great deal, not many clothes or “stuff”– after all, I am mainly going there to write. But that in itself entails bringing such things as my computer, a printer and a ream of paper at a minimum, and I want to bring a small hot pot and cup and coffee as well, since I cannot rely simply on sheer excitement to keep me awake, no more than I ever can. Not even Ritalin, which as you may know I have taken for decades to combat the nearly constant and excessive daytime sleepiness of narcolepsy, really keeps me alert. In fact, often coffee does a better job…On the other hand, I intend to take Zyprexa every day I am there too, which is sedating. This is just so that I know I will be able to read and stay as unafraid of things as possible. Once I get home, I’ll stop taking it, but why not keep on top of things as long as I am there?
I have written several poems in just the last week, but alas, I am unable to share them here. I have learned that many contests and publications do not allow the appearance on the web of poems you want to submit to them or enter there, or else they will be disqualified. Thus I can only post ones that I am certain I will not try to publish or else that have already appeared in my book or previously in another journal, review or magazine. I wish that were not so, as I am thrilled with some of these poems. I also wish that I had not been so quick to enter a few of them into a certain contest, as with a little more rewriting, say, the 110th version rather than the 100th, I might have felt even better about them. Ah well, too late for recriminations. If a given poem is not accepted where I sent it, there are a thousand other venues that might take it when I submit it again.
Enough for now, it is already late and I needs must (how’s that for an archaic expression?) get to work finishing up the dishes and printing out poems. I will need at least 60 for my second book and I have to have copies I can work on at Wisdom House. There are a dozen other things to do before I go to bed tonight…zo I will bid you adieu, au revoir…
I hope I can post something from Wisdom House next week, but if not, I will do so when I get back. Hasta la vista!
I don’t want to tell you why i drew this or what I meant or intended by it (beyond whatever the title evokes in you). All I want to say is that it was largely drawn in colored pencil on watercolor paper, with a tiny bit of acrylic paints, the black background for instance, and the ecru skin of the blue-haired figure, but not the skin on the other other woman, where all the details as well as the skin itself was done with pencils. It is amazing how forgiving watercolor paper is – usually it is imposssible to erase plain old colored pencils, if they are not watercolor pencils. But on the watercolor paper, you can erase as long and as hard as you like, and the paper will remain intact. So it is not so difficult to get the marks off.
Welp, If you feel like commenting, I would love to hear any interpretations you would like to share. If you give me permission, I will also put them up here with the picture.
Finally I have finished the collage here with the background completed and the candy foil earring (I saved foil from innumerable chocolates…and they have no come in handy as I know eventually they would. What do they say? Everything can be an art supply, looked at with a creative spirit. Who says that? Well, I dunno, I guess I do! 8D
I call her Christabel, who was one of the occupational therapists in the hospital this past April and May (all of the OTs were great.) She was a wonderful woman who was the one person who consistently treated me like a human being at a place where I was often not treated much better than an animal or a bad child. Consequently, I never once, as I recall, had occasion nor impulse to scream at her in rage or frustration. Lkewise she never felt it incumbent upon her to withhold from me such ridiculous items as gluesticks or magazines, the sort of carrots with which the nurses attempted to “tame” me. That is, negatively, by taking them away from me until I ‘behaved’ according to their rigid standards. Never once did they acknowledge what I had begged them to understand from the moment I walked in there, which was that I suffered from Lyme disease-induced schizophrenia, and that both the rage episodes and my impulsivity were uncontrollable, (i.e. literally OUT of my control, and “not me” — as the weekend doc herself, Faye H., who knew me well from treating me for years in the past, noted several times in dismay).
Be that as it may, when the nurses, or one of them, the one who really hated me, refused to grant me permission to use a gluestick one afternoon in order to work on this collage, it was Christabel who came to my rescue, by bringing some from the OT office, without so much as a word or caveat to “not tell the nurses.” She simply handed them to me, along with a handful of new magazines to tear colored scraps from, so I could continue work on my face, which I had only just begun.
Everyone asked me, as it was coming together, if I was modeling it on anyone. But the truth is, though I call it Christabel, it is more in honor of her, than intended to be a true likeness. True, she is African American, and has very close cropped hair, but that is as far as the similarities go. In fact, the face is pretty much imaginary and generic. I took the features from, well, my mind, mostly, though I used various faces from magzines to give me an idea of how the light would fall and create shadows, and how the various contours of the features would look. Also to give me a better idea of proportions. The nice thing about these kinds of collages is that paper is very forgiving, so if I made a huge mistake, and made the nose too big or put the lips too close to the nostrils or, as I did, make the eyes too small and close together, all I needed to do was paper them over and start again. In fact, the more layers I used, the stiffer the underlying “post-it note” kind of thin paper foundation became, which proved a good thing when it came to finishing off the edges and finding a way to hang it. I cannot f rame it, as it is 46 inches by 32inches, approximately, and formally framing it would cost a mint. but I polyurethaned it, one, so it would not distintegrate, and bound the edges neatly, and think I will attach a dowel or piece of thin wood at the top to which I can affix a wire and hang it by that. The person, the woman who runs the solo shows every month at DHMAS in Hartford, said that though everything was supposed to be framed, basically as long as it can be hung by a wire, my plans sound fine.
Well enough of this. I think the new photo shows how I finished the face better. Though I could not get the bound edges into the photo alas.
Sorry for my long silence. Things have been busy at best, sometimes just plain hectic.
On the good side, though, this: the Writing Fellowship. A place called Wisdom House in the northwest hills of Connecticut offered free fellowships of 2-10 days for low-income writers from this area to come and stay to work on a writing project. I applied immediately, wanting time to organize, come up with a title, and send out my second book of poems to the Barnard women’s second book contest. Well, after speaking to my references and to my new psychiatrist, they accepted me, the sister in charge calling me last night at 9pm to give me the news. (As my friend, Leila, put it when I told her how late the director called, “nuns do not keep bankers’ hours!”)
Now the only reservation I have vis a vis the fellowship is that it is going to be held while the rest of the center is on a “silent retreat”. This means that everyone else, aside from the two other writers and me, will voluntarily not be talking the entire time. According to Leila, they will not be looking at others or even raising their eyes. While I wanted time to write, I have to admit I anticipated a more convivial atmosphere, or at least a less daunting one. This does not sound exactly friendly. Spiritual, yes, but not friendly. Sr Jo-Ann does, on the other hand, and she has offered her help in any way she can (since I have been more than open about my illness) but I don’t know that she understands quite how difficult I may find this. Even the problem of getting to the dining hall, the speaking one or the silent one, or eating with other people, should I manage to get into the building wherever it is, may pose a huge obstacle, if my experience at the art and crafts center two years ago is any predictor.
Well, I am determined to go, so I will not let my reservations, nor even the tears I shed last night in sheer terror stop me. I must confess however that I am not without mixed emotions in face of this overwhelming silence — and the resulting loneliness or something much worse — I fear I may confront.
On a somewhat brighter note, for six week, I took an art class in New Haven, at the Creative Arts Workshop. I wanted to learn the rock bottom basics, which I figured I needed to start with. Even though I have successfully painted some portraits, I know I need to learn fundamental techniques, both in drawing and painting so I’m not just floundering around, painting more in hope than with real confidence and skill. But getting to the class meant that I had to drive to New Haven — on the interstate — for the first time in more than 20 years. Unable to drive home that same night, I spent two days a week there, staying at my parents’ condo, usually with my father there (my mother was usually at the shore, at the other house). I enjoyed that part of it almost as much as the class. We were so long estranged that I love just seeing him and getting to talk with him, no matter what we talk about.
The class might easily have been too much for me. Three hours of drawing could have sapped all my energy and taken the enjoyment out of it. Instead, somehow the time just winged away, and after the first class, which was the most tiring because I had not yet adjusted to how long a span of time 3 hours was, I got into the rhythm, and never once left early. In fact, I often left with the teacher, just so I talk with her about art.
Now, I say all that as if it were easy and not problematic at all. Certainly no one in the class would have any idea that I feel as I do, but in truth I became quite certain, and remain so, that the teacher soon grew– how do I put it? — sick of me. Overwhelmed by me. Found me overbearing and overly enthusiastic and therefore unpleasant. I know my presence was too much for her to take and so I tried to tone it down, tried not to ask too many questions or talk too much so I stopped staying after class, or showing her what I had done during the week…And frankly, I am a little scared that if I sign up for her next class, which will be a continuation of the last one, it will upset her and she won’t want me there.
In point of fact, I felt the entire class was laughing at me most of the time, that they agreed with her and that they mocked me whenever I left to use the bathroom or to wash my hands of the charcoal that we used so often.
It was only just before the final class, when I brought my sketch pad and showed two people what I had been practicing, that they seemed to realize that I was serious about drawing and art, and not just a foolish older woman taking a class for entertainment. One young woman, Jennie, actually talked to me then, and said I was “very talented.” When she asked for my Facebook page, I gave her the name Pam Wagner, which of course she will never be able to locate me with, alas, as I would be happy to communicate with her.
Nevertheless, I remain wary of the teacher, and of taking her next class, lest I be more than unwelcome. Lest I be bothersome and actively hated. I feel it incumbent upon me to spread myself around, spread the burden around, spread the miasma I cause as wide and therefore as thinly as possible so as not to sicken anyone seriously. The only real solution I can think of though is to completely shut up and be as minimal a presence there as I can. To not be visible in any way, to make no sound or impression…To do the work, and learn what I can, without, so to speak, making a mark. That way I won’t bother anyone or disturb the peace, or anyone’s peace of mind.
Then there are less positive aspect of being “busy” — Well, no, I cannot dig into this at the moment, except to say that I need to take a break from seeing Joe. Joe, if you recall, is my long-time friend (24+ years), who has Lou Gehrig’s Disease and has been in hospital for 3 years, mostly paralyzed and on a ventilator. I have visited him almost every week, sometimes twice a week, all of that time, but now I need to take some time for myself, take some time to think about what to do.. It is true that I have sometimes been away for as many as 6 weeks, but that was when I was hospitalized, and while to Joe it may feel only as if I am absent — who cares why!– to me it is not voluntary time off and certainly no vacation!
I love Joe, but only as a friend, not as a girlfriend despite what people think. And if the people in the hospital believe otherwise, it is only because I told Joe when he first became ill, that I would “be his girlfriend” — the one dream he always cherished and held out for and hoped would come to pass for some 24 years! And mostly because it was the one gift I could give him, knowing that it was a dying man’s wish-come-true.
The problem is that when he was in fact dying, when he had terrible aspiration pneumonia and could not breathe without assistance (at which point, most people with ALS, or Lou Gehrig’s, opt to die, knowing what the future holds) he asked to be put on a ventilator. Hence, for the past 3 years, I have had to act the part of devoted “girlfriend” (completely non-sexual, though, just as our relationship has always been). And it has long been assumed that my love for Joe is the sole driver behind my visits. Not pure loyalty, mind you, but in some sense my own selfish need to be with him. It seems not to have occurred to anyone that maybe I do it mostly for him, to help him and keep him company…rather than because I myself want anything from it at all.
This is not to say that I don’t enjoy seeing Joe, or that I resent spending time with him. Most of the time I do not, or when I do, it is only because I feel I cannot say, No, I cannot come today, or worse, No, I do not want to come today, not even when I haven’t slept and am utterly exhausted. Usually when or after I visit, I feel better in some sense — at least about us. I feel less guilty and more needed (a double-edged sword!)
But I admit that it is extremely tiring to have to stand up the entire visit — an hour or two — and pay exquisitely close attention in order to understand what his computer (which takes eons to do it) translates from his spelling into speech. When I finally get home after the 30 minute ride back with Josephine, I am wiped out for hours. Even on a good day, the rest of the afternoon is shot just because of visiting him, and that is true even when I only stay an hour.
Well, I said I wasn’t going to go into it, esp not with details, so I will leave that alone, except to say that recently we had a big — what was it? Altercation? Spat? Misunderstanding? Who knows what to call it, but it left me me feeling unappreciated, taken for granted, and most of all, just plain angry. Worse, it induced this exhausted feeling in me that left me hopeless and desperate. That is why I wrote Joe and told him I needed some time off, needed time to reflect and think about things. I did not ask him for it, nor tell him what I needed it for, nor how long it would take. I did reassure him I would be back. But otherwise I simply stated my needs and informed him what I was going to do about it.
I haven’t heard from him since, but unless he is still upset or angry with me, which would be unlike him, he is simply giving me the space I need.
That is all I have the energy and time for tonight. I hope to go out for another of the 2 mile walks that a friend and I have set for ourselves to do as often as we can. We are trying to get in 10 miles a week, but so far I think the best we have done is maybe 8 miles. Still, that is MUCH better than doing nothing at all, which was my usual, until we got together to spur each other on. Usually it is she who gets me up and over to the park to meet her, and I who keeps her going at a great clip. So we help one another and get our gabbing done into the bargain.
Thanks for your patience. I have another entry planned, and hope to work on it tonight for posting tomorrow or the next day — about delusions of grandeur and other symptoms.
Sorry for not writing for so long. I will get back here soon, but for now I wanted to post my most recent art work, at least as it stands now.
Using Klimt
This collage was made by tearing apart several posters and calendar reproductions of Gustav Klimt’s works then making a collage of my own out of them. If you know Klimt’s works you may recognize some of them in this work, though of course the picture itself is my own…That is why I call it “Using Klimt.” It is 20 inches by 30 inches though I was not able to get all of it into the photo. The head was cut off a bit as were part of the legs…
Oh yeah, I meant to add that the position the couple assumes is based on the famous Alfred Eisenstaedt photo taken on the occasion of VJ Day (Aug 15, 1945) when he wrote that his camera happened to catch a sailor spontaneously grabbing an unknown nurse (Edith Shain just died, 6 days ago, at 91) and smooching her, a glorious photo that is possibly the most famous one ever taken. Certainly, not one person I have mentioned it to has not immediately known what I was talking about. In fact, several people even commented that this collage brought it to mind…How perspicacious! Mine, if you notice, has the couple reversed, though, with the man to the right instead of the left…You would have to remember the original photo to understand this.
The following may repeat some of what I have written before, though expressed rather differently. I “purloined” it from a letter I wrote to someone I once knew, who I hope will forgive me if he ever visits this blog and recognizes it here.
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Life continues to present many challenges, which both the poetry book and Mary’s introduction to WE MAD CLIMB SHAKY LADDERS illuminate , I suppose, in some detail. But among the thrills and wonders of these last few years of recovery are two that are related to one another but which I would never have dreamed of in relation to me.
I speak of vision, one — of depth perception — and two, of art. I don’t know if you have heard of the recent science memoir by Sue Barry called, Fixing My Gaze, in which she describes her strabismus and her work in vision therapy. Apparently the book has become quite popular, at least around here, after a review in the Hartford Courant (Barry lives not far from Northampton, MA). Strangely enough, I have been writing for the past year about, among other things, my own experience in vision therapy trying to achieve stereopsis . I believe I must have had “3-D vision” at some point, since I did not have strabismus as a child. At least not to the same extent as Barry, and I think I did when very young “see” what others said they saw through those Viewmaster toys (you must remember those binocular viewers with the “3-D” slides?). My later lack of 3-D vision never bothered me, apparently, and I never knew that I was missing anything, until I developed frank double vision about four or five years ago. My optometrist told me I probably had had unrecognized intermittent exotropia since childhood, but that my eye muscles had been somewhat stronger then and so my vision had stayed single. She could not say however if it had indeed been binocular, that is to say that I had used both eyes in seeing.. In any event, it was only when I was given prism glasses in 2008 and in February suddenly experienced brief, brief flashes of stereopsis that I understood what most people see, what I had in fact gone for so long without seeing. The world was suddenly, achingly more beautiful than — well, than anyone else seemed to recognize:
The first time on the Broad Street Green I passed the huge tree with its bark “sticking out” I was stunned, stopping dead in my tracks to stare at the reddish burnt sienna ridges that had suddenly leapt out at me. Stark, knifelike and jagged, the crusty surface was backlit by an early setting sun in such a way that it all seemed limned with light. A gentle roughness edged the troughs and depressions. Spawned from the cortex wood, the bark strained and stretched. I could scarcely believe how the air gently touched and tasted each indentation and projection of bark — as if saying, “I love you, I love every inch of you and my kisses, my airy bearhug proves it.” Just as surely as I knew the air loved that bark, I knew that space, the “emptiness” that cups and holds everything in its place safely, adores matter. This struck me as neither bizarre nor even uncommon, only obvious. What was strange and unfortunate to me was the fact that no one I spoke to about this experience seemed to know what I was talking about…
I cannot tell you (or anyone else for that matter, except perhaps Sue Barry, or Oliver Sacks) how much “space loves us” and everything it touches. Space is what gives us as a gift to ourselves..And when I saw it, saw space for the first time I fell in love with matter, and with the hollows and shapeliness of everything. I wanted to do nothing but gaze upon the world without touching it or or talking for at least a week…I wanted to walk around in silent solitude, experiencing space without interruption, to see without the interposing of frivolous conversation how incredible it was that you write words with pens held above the paper; that when you see a sign or a billboard, there is — and you are as certain of this as of any delusion —the knowledge that there is flatness to it, and that “more space” lies beyond it…Someone’s nose which reaches out in space is far more interesting than their voice, and the way a hand extends outward can be the most lovely thing seen…Indeed, I would tell people quite spontaneously how beautiful they looked, the way their noses projected from their faces, or their hands suddenly coming out at me…
Oh, it is so impossible to convey the sheer — well, even now there are no words for this, no words beyond that single inadequate word, beauty, for which there seems to be no useful synonym. All I can say is that while I felt no better about myself, I certainly fell in love with the substance of the world! Who can say, What is the matter with the world? Seriously? All is the world is the matter, and that matter is more exquisitely lovely and worthy of being preserved than even many principles — Free trade, capitalism, rugged individualism above socialism in any and all forms etc — Americans feel they have a right to hold so dear…
As for Art? In my cooler moments I reduce it to “medicine”, to symptomatology…thinking perhaps this amazing talent, so unexpected and newfound, has merely to do with the Temporal Lobe Epilepsy or seizure disorder with which I was diagnosed after having ECT about 3-5 years ago. I don’t know. (I read in SEIZED by Eve La Plante that not only are there personality changes but one can acquire sudden artistic abilities and interests, almost full-blown after developing TLE..so who knows?) Perhaps not. In any event, (I should mention that this is my theory little mentioned to anyone at all…Not sure to whom I should talk…) starting in 2007 I took up lifesize papier mache sculpture in a serious way, and just a week ago suddenly, VERY suddenly, discovered that I could paint portraits, just like that…I had never done a portrait before, rarely even tried to draw, had always said I couldn’t draw or paint for beans. Then one instant I felt drawn to paint (with which I had always decorated my papier mache, with swirls and colors but not true representational painting) and to doing “real art”. I “decided” I would paint a young man, and then went ahead and fearlessly did so (see first attachment)…Since then I have done one portrait a day. Some imaginary, some from photos…And I have no idea, had no idea I could do so at all! Frankly, ditto the sculpture, though I am getting used to that ability now that I have several to my name…(see two other attachments for examples of earliest pieces).
I hope you won’t mind all this “Wow is me” stuff…I’m not usually so impressed with myself, I assure you. However, while I am at it, I want to send you three newer poems. I actually dislike most of the illness poems in the book, and want you to see what I have been doing more recently, since the DIVIDED MINDS book was finished in 2003. I hope these poems speak for themselves. The “Epithalamion” one got a lot of chuckles, and ought to, when read properly (best out loud). I read it at my twin’s wedding. “To the Reader” will be the first poem in my second book, the opener, though perhaps not as “welcoming” as “How to read a Poem”. And the vision therapy one is about what I have been doing in order to regain stereopsis. Which by the way really works, vision therapy that is, despite the skepticism of most ophthalmologists, who never bother to try it out, just condemn and contemn it out of hand, because it is done by ODs not MDs….VT has to be continually practiced though or like me you can lose the ground you gained after a while. Now I struggle to gain it back. I vow to keep practicing. I do not think I can go without the exercises not after having gotten my eyes to do what they should do. It is so discouraging now to be back at nearly square one, I must admit…
This is my ALL EYES ARE UPON US papier mache sculpture head — It should easily be finished by the time I am having a poetry reading and exhibit in Mystic on November 15th. I would like to exhibit it with the others if possible. It is the newest of my work and therefore the one I am most proud of. I am not completely clear just where I am going with it, but I do know not to worry, that inspiration will come to me eventually. Indeed, some already has; I am starting to place a tri-folded American flag underneath her ( yes it is a woman…) arms, as if she is hugging it for dear life…Why? not sure, but I believe my subconscious has a message for me there…I will decipher it and rest of it later, when I am through. However, my thoghts on the “meaning” is never the last word on it. I expect my viewers to do the same, that is, interpret the sculpture according to their own lights, according to the vicissitudes, or the longstanding truths of their own lives, not mine. It should mean whatever they want it to mean, according to their own life experiences. All of which is to say, There is no right answer, no real meaning here, only the sculpture’s evocative power to suggest this to one person and that to another.
Now regarding this post’s title, Compulsive Eating and Zyprexa: I had a rough week two weeks ago, during which I did something self-destructive though along too familiar lines with a “fagot” of cigarettes tied together with thread and simultaneously lighted. There was talk of the hospital to “keep me safe” if nothing else, but I saw no point, and indeed there was none. No hospital had ever proven they coud truly keep me safe: I have attempted and successfully hurt myself sometimes seriously almost everywhere I’ve been sent to, including breaking a carefully supervised mirror in a make-up compact and slicing my wrist open. My visitng nurse knew and agreed but made me agree to take a PRN of Zyprexa for a while. I didn’t really fight this. As you, Readers, know, Zyprexa is a drug abut which I am extraordinarily ambivalent. It is both the single most helpful and effective drug I have ever taken, nearly a miracle medication, if not precisely that, but also the absolute pits in terms of a side effect I hate more than any. I have not yet figured out how to tolerate this love/hate relationship I have with the drug. For instance, despite hating the single worst side effect, I very much appreciate being able to read, read, read, to concentrate and pay attention and remember..
Oh, perhaps it feels subtle the effect that Zyprexa produces, the therapeutic one, the helpful effect . In actuality, though, the change in my behavior is immense, not to mention on some very fundamental thought patterns. I don’t actually recognize at first that all of it is drug-induced: I just sit down and decide to pick up a book — that all by itself is unusual for all that it feels natural. But so too is the astonishing fact that I feel interested instead of listless and fearful that I won’t “get” it, that I wont be able to attend, and upon opening the book, the fact that every word seems to flow, my mind fluid and absorbent and the words just pour, the words and the sense and the meaning, well, if I weren’t so absorbed in it, I would be amazed… But I think, Why haven’t I read before now? Why, when it is so easy, have I not been doing this all along? ( I have forgotten that it was NOT this easy until I took the Zyprexa…). But the difference between then — not reading, and now — being able to attend and absorb and read — is not subtle at all. It is marked and significant. I finish books and articles, instead of merely dabbling in them. And I remember what I read, instead of most of the content flying in one ear and out the other.
But the same effect that brings about the therapeutic effect, unfortunately and seemingly by the same mechanism, induces the unwanted and horrid side effect of an insatiable appetite. Just as subtle and my being able to read, I scarcely notice at first that i want to eat more than usual. I simply feel increased desire for food, and think nothing of it, since wanting food is normal, right? It is only when I recognize, when I realize that it is constant, and occurs immediately after I have just finished a full dinner plate that I begin to associate it to the new medication. My weight quicky increases, but because the food desire feels like me, as if it is simply native to me, I cannot justify it as purely drug induced, but am ashamed of my new lack of self-discipline and my also new tendency to compulsive overeating. Even when I know for certain it is all “chemistry” –and begin to tie ALL obesity therefore to chemistry to the effect of body chemistry that is out of whack, either congenitally or induced by the environment, perhaps by igesting the wrong foods themselves. What if eating high fructose corn syrup, already associated (the reasons are still unclear) with obesity, changes one’s chemistry to produce a malignant positive feedback that only induces more obesity ad infinitum as long as one continues ingesting it? Even when I know for certain that my increased and uncontrollable appetite is pure “chemistry” it doesn’t fully relieve either my shame or my latent anger at what ‘I have done to myself.”
I have been off Zyprexa for many months now, and have rarely needed or taken a PRN, but thought it makes a noticeable and positive difference, it is the already evident weight gain I cannot/WILL not tolerate (Truth is, it showed no sign of ending even at 160 pounds the last time I took it). My friend Joe who has taken it for years developed another very common “side effect” of this drug, diabetes, on top of ALS… So I am between the Scylla of “negative” and/or cognitive symptoms — poor concentration and inability to pay attention, the lack of a certain spark in my life AND Charybdis — the whirlpool of an uncontrollable urge to eat up everything in my refrigerator right after I have already had a full meal, the wild animal panic if I cannot, and the lack of concentration induced in its place because all my mind can focus on is “What can I eat now???” It is a panic I feel in my hands, especially along the backs of them, more than anywhere. I certainly do not eat out of even imagined hunger. I know that. I feel FULL, in most cases because when I am hungry I usually will eat sensibly… But when smitten by the drug-induced food-seeking behavior after a full meal, I can even tell myself out loud, “You aren’t hungry, you don’t need to eat”…this piece of bread, or cheese, or fruit, whatever is in my hand. I listen too, I put the food back at once, and wash my hands, and go back to the living room to read or do my art or whatever I was occupied in doing before I was seized by this compulsion. But literally no more than 10 or 20 seconds later, another food impulse will propel me from my seat to the refrigerator, and if not consciously thwarted I will eat. And eat, and eat. Not like a bulimic, mind you. No, I take one piece of fruit or bread or cheese (I did not last as a vegan, alas, because I felt sick and dizzy living on fruit and green and colored veggies) and a knife and a plate, and sit in a chair, and cut it up and eat it reasonably slowly while I read. But soon I am finished and ready to read again “solo.” That is when the tension starts building to another threshold over which I feel it is impossible to climb in safety.
What I do instead, is follow this ritual, with another just like it a couple of minutes later, and then a couple of minutes after finishing the second and ditto the third and fourth and… Before you know it I have eaten so many calories up to a certain point, a set point if you will, where finally the switch flips off and my “hunger” goes off, and so does the food-seeking…I can now settle down and get something done. but until the threshold is reached and surpassed, I cam think of nothing but eating. The cure for it, the only remedy, is that I must be sure to short circuit the cycle by taking Xyrem and forcing myself to go to bed after supper. And I must NOT eat all day and evening except for coffee and diet soda (luckily the Zyprexa induces food-seeking behavior and not real hunger, so I am not tortured as long as I do not break my fast), until right before bed I allow myself to take a few bites. If I do not eat at all, I do not feel like eating and the cravings do not even begin. It is when I do take the first bite, just like an alcoholic, that all bets are off and all the control gates to hold back the flood open.
I still think that Zyprexa induced eating and 15 mg of Abilify-induced lack of appetite would be a great way to study the science of appetite, what causes compulsive eating and what breaks that cycle and stops appetite and interest or uncontrollable interest altogether. I would agree to be that guinea pig but I’d aso say that plenty of people could do so…I don’t see why others would not react as I do, especially a plenty of people have had the same weight gain reaction as I.
I will try to continue my discussion of this topic soon, as I want to research it a bit and I have some further thoughts on the subject. However, at the moment I needs must get other work done…
TTFN
Oh yeah, by the way, Li and I had a decent discussion abut TLE during one of my recent visits and it made me feel better about him, for the time being. At least he is going to consider it, though he told me it never rules out schizophrenia as there are always a percentage of those with TLE that concomitantly have schizophrenia as well.
This is how Newsweek begins its article about the Icarus Project and Mad Pride:
“We don’t want to be normal,” Will Hall tells me. The 43-year-old has been diagnosed as schizophrenic, and doctors have prescribed antipsychotic medication for him. But Hall would rather value his mentally extreme states than try to suppress them, so he doesn’t take his meds. Instead, he practices yoga and avoids coffee and sugar. He is delicate and thin, with dark plum polish on his fingernails and black fashion sneakers on his feet, his half Native American ancestry evident in his dark hair and dark eyes. Cultivated and charismatic, he is also unusually energetic, so much so that he seems to be vibrating even when sitting still.“ http://www.newsweek.com/id/195694
Readers will note two things immediately: It is not common for someone diagnosed with schizophrenia these days to be “delicate and thin” — despite articles claiming to prove a supposed link between schizophrenia the illness and obesity, most of us would say that weight gain went right along with taking meds from the get go. And that most of us were originally either of normal weight or even thin compared to “normals.” the other striking thing, I think, is Will Hall’s level of energy. Most of those with schizophrenia, at least those on meds that I know, have a much lower level than normal of energy and motivation, which again is attributed to the illness itself. Now of course negative symptoms might be an effect of the illness, yes. But I also know that at least when I took the older drugs, like thorazine and mellaril, they added tremendously to any inner listlessness I might have felt. Indeed, what else is the infamous Thorazine shuffle but a drug side effect that practically screams medication-induced psychomotor retardation?
In any event, it may be that some of my readers with schizophrenia, and many of the mothers (and in my experience when caregivers visit this site it is often mothers who do though sometimes fathers do as well) of those with schizophrenia, may well disapprove of my posting this link. But I feel it deserves a viewing. Too many of us suffer the effects of medication without benefiting from its advantages not to offer another form of hope. As long as someone is not a danger to him or herself or others, why should they not be offered the experience of Mad Pride, should they prefer it? In these later stages of my own “condition” I too long to be off meds and to experience my experience, to do art unencumbered by the effect of meds that fatigue me if nothing else. But if I feel enabled now, and emboldened by some inner force to do art, I just might be liberated to unknown heights once off the meds, and if I can control the dangers I used to put myself in vis a vis cigarettes and such, why should i not be permitted such an experiment. Alas, no one here would ever allow it. I would have to endure such remonstrations and scolding and worse from relatives and others it is simply not worth it, or else I simply could not bear the bitterness of fighting with them…SO I am stuck, stuck on these deadening and dangerous medications until such a time as I feel free enough to move away, leave town and move elsewhere. Until such a time as universal health care enables me the freedom to leave the benefits Connecticut so generously provides me as a Medicaid/Medicare patient, and live elsewhere, I am simply forced to live in my same old tiny apartment and change nothing.
But some of you might be wanting to make that change and be more capable of it, be more able to maintain 1) stability and 2) a family support network, rather than a state of constant resentful watchfulness and remonstrations of such bitterness that make it not worth the effort. I know my friends would definitely support me, but I need my family to as well, or feel I do…I am not yet ready to say I can do without it at any rate…And so I remain in thrall to their demands on me, despite the fact that for many years I had no ties to them at all, and neither help nor obligations bound us. If it is good now between us, and I love that part of it, it also means that I feel that I must live up to expectations I could disregard before…and that is so hard, and often such a burden.
Nevertheless, I love them, insofar as I am capable of the emotion of love (see posts below for an explanation of that caveat). And if I am not, then I feel for them as mu9ch as I am capable of feeling for anyone…which is all they can ask.
But I have diverged from my initial subject matter which was Mad Pride. Tomorrow I give a talk and a poetry reading at the House where I live of 250 residents, though only a handful are expected to attend. IN the talk I finish by answering the question, do I link mental illness and creativity, and my answer is, Maybe, but even so, in most cases the best work, mine at any rate, is done “best when I am better.” I mean by this that deep in psychosis I cannot write anything decent, if I write at all nor do any decent art, because I am no longer motivated nor able to concentrate well enough to do so. Perhaps in a manic state I have been able to, but those have sadly (yes!) been too few. Otherwise my more extreme moods have been called a mixed state or major depression. In any of those moods, and certainly when extremely or even moderately paranoid, I do little work at all. And when hearing “bad voices” ditto, since that is when I am most likely to be concentrating on acts of self-harm and least on self-nurturing activities such as art. So you see why I say what I do, that only when I am at least getting better do I do my best work?
Moreover, I believe this is true of most people. It seems to me that even in the case of the Mad Pride artwork at the Newsweek site, those artists were not in fact psychotic at the time they did their art, Oh, perhaps they were depressed, but clearly not catatonicly depressed, by definition. And I cannot believe that they were disorganized even if their diagnosis was schizophrenia, because however weird the artwork, there was recognizable order and ordering in each and every one…
Welp, I am getting fatigued just writing this, so I will leave you with that short disquisition and the link to The Icarus Project. I am not endorsing or not- endorsing it, only expressing my interest and indicating my plan to continue to read up and find out more. Somewhat not surprisingly, there is an active ? branch in Northampton, MA, which is the town I have wanted to move to for a number of years, but have not yet had the nerve. Nor has there been the financial or medical feasibility. Now there might be, but it is still not possible. Oh, I wish I could move, but there is Joe to consider, and I would not leave him now.
That said, here is the Icarus Project Link. Enjoy? Comments will all be read and appreciated. I will respond if I can.
WAGblog: Dum Spiro Spero 