All posts by Phoebe Sparrow Wagner

Artist, author, poet
Lyme Disease, Mental Health, Psychiatric Unit, Psychiatry, Seclusion and Restraints

Natchaug Hospital Stay and Comfort Room

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I have been away since December 17th, in the hospital yet again. This time the experience – at Natchaug Hospital in Willimantic — was vastly better than the previous two and not abusive at all. I want to tell you about this, but first let me go back to what happened to get me there.

In the beginning of December I began to have trouble again. The “people” came back with their jeering and mockery and commands. A general confusion assailed me. In my journal I recorded many “cries” of MATOOTAM! : “Kill the Ogre that Ate Manhattan” which many of you know means me. I also began to burn myself under the influence of those command hallucinations. I still believe this was all a Lyme disease relapse, but I had been on antibiotics  previously for 8 years – with positive tests for Lyme and other tick-borne illnesses intermittently during that time — without being cured, so there was and continues to be nothing but symptomatic treatment. This means, as my new psychiatrist, Dr C, argues, at least temporary use of the hated, and loved, atypical antipsychotic, Zyprexa. I already am taking Abilify and Geodon, as well as Lamictal for mood stabilization and possible temporal lobe seizure activity. However, as has happened before, these were not effective enough to carry me through such a crisis, which is why I was encouraged to take Zyprexa, 20 mg to head off anything worse. Despite my resistance – I really hate the immediate increase of appetite and weight that accompanies taking it – I did so, I assure you. But the damage was already done and the crisis took on a life of its own, so to speak. By mid-December, I was  no longer “safe,” the code word my visiting nurse among others uses for my listening to the commands the “people” give me. She didn’t know how true that was, though, until I finally admitted it after four days of what I will only describe as obedience to those same commands.  I saw Dr C that Thursday, and though she was uncertain of my safety, she decided that I would talk with her every evening until I saw her again the following Tuesday.

 

The truth is, I do not really recall most of this, neither intellectually nor emotionally. I have had to be told and to refer to my journal in order to recount all of the preceding. However, I do remember what happened next. In addition to the reappearance of the People, I began to experience what I called “brain blips.” These were very brief episodes in which I felt as if my brain suddenly did a somersault, a little like the feeling when your heart skips a beat, except that it was in my brain and accompanied by a terrible dread and feelings of impending doom. After the fraction of a second in which the blip occurred, I would come back to myself – it felt as if for an instant I lost consciousness, but the blip was so very brief that it didn’t seem possible. These episodes were terribly frightening, even though nothing ever happened during or after them, not at least of the dreadful sort I feared.

 

That Friday evening, my heart racing and my mind itself awry, I was in another world, so confused that I wasn’t quite sure what was going on. I managed to call Dr C, who prescribed Ativan. It was too late to call the nurse to pick it up for me so I got in the car to drive the mile to CVS but as soon as I pulled out of the parking lot, the other world took over completely. I do not know how I actually got to the drugstore. I recall only that I could barely hear or see for the pandemonium in my mind but that I was aware enough of the danger to drive only 20 mph the entire way. Once there, however, I didn’t know what to do. I didn’t know how to get home and I forgot about getting the Ativan altogether. Somehow I managed to tell the pharmacist that something was wrong, that I couldn’t drive home, but she thought I meant that the car had broken down, and called a cab for me. I went outside to smoke a cigarette and wait for it, but I was so scared of the shoppers who came and went – the drugstore was open 24 hours a day so anyone in the area who needed something after 10pm came there – that I was unable to take more than a few drags, hiding behind a pillar. I returned to the pharmacist and whispered that there was something terribly wrong, with my brain, that as I felt, bugs had infested it and that I was in another world. Finally she understood and called an ambulance.

 

I won’t go into the drive to the ER except to say that I was so “out of it” that I wasn’t even upset that the EMTs made me get on the stretcher right in the middle of CVS and that everyone saw me being taken out of there. Once in the vehicle, I tried to explain to them that despite the large wound they would discover on my leg, there was something wrong with my brain itself, that this was not a purely psychiatric matter and that I needed medical, neurological care. Indeed, I still feel that way, but much good that did. Once a “mental patient” always a “mental patient” it seems. I admit, though, that having burned my leg did not help much. Still, I tried to explain that I needed an MRI of my brain, that something was wrong, a bleed or parasites or something! You can guess their response: of course, they summarily dismissed all of that and quickly had me packed off to the psych section of the emergency room. Although this is a very comfortable, large and separate unit of the ER, with single cubicles for each patient and a TV but also a video camera in each one, I waited 3 days before a bed was available for me, some 25 miles or more away at Natchaug Hospital, a psychiatric hospital in Mansfield Center, in Connecticut.

 

I name the hospital openly – as opposed to the others I have written about — because it was  amazing in so many ways that I want both to sing its praises and to “advertise” it so to speak, to describe what a really good psychiatric hospital ought to be like. It is true that most people were in for a very short time, Connecticut having virtually no long term beds any longer, not even in the state hospital, but whether acute care or for somewhat longer stays, Natchaug was quite simply the best place I have ever been. From the food, to the – well, let me go into more detail rather than a mere summary (though in my opinion, the food was indeed a cut above that in any place I have been in, both in availability, and, with a salad bar at every meal, quality.)

 

Upon admission there was, to my dismay, a requisite “clothing and body search.” This procedure was done in such a way as to preserve as much dignity and privacy of one’s person as possible but I feared at first that it boded ill for the rest of my stay. Also, I discovered that although there were, I think, two private rooms, I had been assigned a double, a semi-private room, with a roommate already installed. This was upsetting to me, as I had almost always had a single, or been moved to one because the unit staff either felt I was too disruptive or unable to tolerate the stress of a roommate. However, when I saw how the semi-private rooms were carefully partitioned with a floor to ceiling wall in between the bed areas, I was much reassured. Although I eventually did for a short time have a private room, or a double that was designated as private – I frankly do not remember why! – I was not bothered by either roommate that I had while there. The one who did try to get me to – Oh, I dunno. I just am no longer one to “socialize” with other patients and I simply did not feel like getting to know her, or to excessively “sympathize” or otherwise expend my limited energy on her problems. I feel a little bad about this, but this one roommate, the second one, at first tried to involve me in her “stuff” and even left a journal or something next to my bed “for you to read to find out more about me.” Well, this was so very intrusive, and nothing I had asked for at all, that I rudely, but decisively said, “Why would I want to do that?”

 

I know that I would have been terribly hurt and humiliated by someone’s saying such a thing to me, but on the other hand, I would never have been so forward with a complete stranger either. In any event, she quickly took the papers back and left the room. However, a day later, she seemed to have no hard feelings, and we got along, if distantly at least as well as I wanted to.

 

Where was I? Well, I will tell you that the worst thing about my stay, and I suppose unavoidable, since I was there over the holidays, was that I had three different doctors for the three weeks I was there. but the best things were two, or more, but two in particular. One was that there was NO seclusion room, that is to say, the seclusion room that they used to have was not only now designated at the Comfort Room, but in fact was comfortable, and open at most times for use by anyone needing comfort. In it, there were thick mats on the floor, a Grandma Moses-like mural painted on all four walls by artist staff members and best of all a “therapy chair.” This is a very large and comfortable rocking recliner that is built in such a way as to elevate your legs, while you recline against the back, and let your feet dangle over the end. This allows the person to position the very lightweight chair near a wall so as to be able to lightly touch the wall with the feet and keep the chair rocking with little effort all the while lying back and relaxing. Their next improvement planned is to get headphones, wireless, or MP3 players with a  selection of music for additional relaxation and comforting.

 

I usually tell staff at hospitals that they “cannot keep me safe” and indeed “prove” it by obeying in some fashion the commands the People give me…This never exactly endears me to anyone, and in fact has more often than not earned me a reputation as very difficult, even as having a “borderline personality” as an Axis 2 diagnosis (not true). Be that as it may, I was in fact kept safe at Natchaug, and when I was not, I was on a very helpful rather than punitive 1:1 or constant observation. At Natucahug, one-to-one staff were supposed to talk to me, rather than kept from doing so as at other hospitals, “so that you won’t come to like the attention too much.” The few times I became very upset, screaming, just screaming, at the top of my lungs, and rather than choosing to go on my own was escorted to the Comfort Room, by “staff assist” people (there is no “Dr Strong” goon squad of uniformed security guards), the door to the room was open and someone talked to me the entire time. Thus, when I left, on my own, when I felt calmer, I also felt that the reasons that I had been so distraught were also alleviated.

 

Also, although Natchaug, like any other hospital, did have a restraints policy, they did not use them a single time the entire three weeks I was there. In fact, though there was a very disruptive, troubling patient there the entire time (for once it was not I) I do not believe they even came close to considering using them. This time I believe it when they said that they almost never have to use them at all.

 

But the very best thing about my stay was something quite serendipitous: it turned out that the Director of Nursing for the whole hospital is Sharon H, the very same APRN who had been head nurse during my many stays at a Hartford hospital, and who had taken upon herself to supervise my care, or at least seemed to have in some sense “taken me under her wing.” Sharon is, and always was, both extremely bright and compassionate beyond words. She is also insightful in a way that I found the first two doctors I had were not, and if the third was, I did not have a chance to find out because I saw her only 4 times. It is true that Sharon had the advantage of having known me well, if 17 years ago, but still, she seems to have this ability to size up a situation, at least with me, and both to calm me if necessary and to suggest a solution that simply fits…I have to say that I felt especially well taken care of. Sharon made sure she saw me every afternoon, though this was above and beyond the call of any duty.

 

This description scarcely does my stay at this hospital justice. Although, like any hospitalization, it was not an easy stay, nonetheless I can only say that I cannot thank Sharon and the Natchaug staff enough for all that she and they did for me.

(PS Forgive any typos I have not yet corrected but it is getting late and I am too tired to go back and check for them at the present time…Lazy me!)

Art and artwork, Health Care Reform, Memory, portraits, Prisons, Psychiatric Unit, Violence

Schizophrenia and Traumatic Treatment: Continued Use of Restraints and Seclusion

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Please note: For my final take on what happened at Middlesex, please jump to this link: https://wagblog.wordpress.com/2012/05/15/useless-psychiatric-mediation-and-a-poem/   (added in September 2012)

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 needlework
Rose intent on rugmaking
Rose comparison of painting with photo

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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!
Art and artwork, Book, Global Warming, portraits, Psychiatric Unit, Wisdom House, Writing

The Painted Woman, Poem for 350.org, plus yada yada

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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!

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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.

Appetite, Eating, Nutrition, Schizophrenia, Zyprex

Symptoms, Zyprexa and Recovery Again

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Zyprexa: "The miracle and the monster"

 

Yes, I am kinda sick of this rollercoaster, myself. But there you have it. If I will not or cannot take the medication, and I have no other choice, what is a person to do? I know it is a miracle drug, yet I fight taking Zyprexa at every possible turn. Why? Because, frankly, I cannot tolerate the enormous weight gain it caused the first time I took it – and for many years, off and on. I simply cannot stand being that visible, eating up so much of others’ air, intruding, in truth obtruding into their space as I do  even now…People will ask me questions about some “trade-off” as if it were so easy as that, as if THEY could easily decide, would have no trouble opting to take the drug, and die early from diabetes, which almost a foregone conclusion after becoming obese on Zyprexa. Hell, even without the obesity factor, people develop diabetes on the drug…And that’s only for starters, what about the cholesterol and triglyceride levels  that go up and up? Or is that part of the trade off too? That a person with schizophrenia should not care about elevated levels the way anyone else does…

I have mentioned here, I believe, the recent studies that have shown that people with SZ  become overweight and obese SOLELY on account of the medications. Without these medications, as a group we would tend to be thinner than the average adult. I have suspected this for many years. It would seem to me that every time I read a memoir by someone with sz, they would tell a tale of being a very slim person, until they were plied with some typical or atypical anti-psychotic, at which point they started gaining weight. Now, it was never clear to me whether or not the old drugs really helped much of anything, except to alleviate a few positive symptoms in some people.

Oh, those who disturbed the peace could be quieted, calmed yes,but no one was cured. I met very few people who wanted to take meds because the drugs actually made them feel better. Oh, perhaps they did, since if one got rid of the hallucinations and delusions of course one would feel better. But for myself the old neuroleptics  didn’t work particularly well on either positive or negative symptoms, and the side effects were awful, esp the deadening  lethargy the drugs produced. I would never choose to take any of those drugs and I agreed to take prolixin because it was the lesser evil because otherwise, they would threaten me with consequences far worse…But had I had the choice no way would I have chosen to take any of those drugs.

I’m terribly sorry, but I must stop here. I just wanted to get start on someting, but it is 4 am and I need to go to sleep, plus my eyes are so wonky all over again that I can barely see what I am doing, and at times I cannot at all. My eyes are going nuts again, crossing over or going outwards whatever! All I know is the text dances around and I cannot see through the jumble of letters frlying around. It is hard even to figure out which hand is doing what!

Well, enough for now. I hope to be back here tomorrow, but time has a way of getting away from me…

Certainly, the side effects of drugs like Thorazine were problematic enough to begin with. And count weight gain among them. How is it that any doc in state institutions could not see this correlation? But as you know, “there are
none so blind as those who will not see…”

Art and artwork, Uncategorized

Who Am I: The Ogre That Ate Manhattan

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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.

The Ogre that Ate Manhattan
Art and artwork, Nutition, Poetry, portraits, Uncategorized, Writing

African American Woman — FInished Drawing

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Sophronsie in white hat

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!

ALS, Art and artwork, Book, Poetry, Uncategorized, Wisdom House, Writing

GREETINGS FROM WISDOM HOUSE! (Plus an unrelated word or two about PARANOIA)

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Photo by Sr Jo-Ann Iannotti OP

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!

—————————————————————————-

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,

waiting for the one car to cross the bridge

whose toll is so high we all pay with our lives.

WORRYWART

Tonight I’m up late worrying

about a badly canned chestnut puree

and botulism, which is useless

since I’ll know soon enough from

what the Merck Manual describes as

“difficulty speaking or swallowing,

drooping eyelids, double vision,

lassitude and weakness progressing

to paralysis” that I have it

or not. Not very likely with only

130 cases in the U.S. in a year,

but as I said, I worry, and worry attaches

to anything: leprosy, asteroids falling

from the sky, dirt on your hands.

Most people worry too much

about things that won’t matter

after six months. My friend doesn’t

have to worry about those. He is

losing his speech to Lou Gehrig’s. In six

months who knows what won’t work

any longer or which will matter

most. His assistive device says

the words he types, but how I miss

the sound of his voice, which I’ve forgotten

except when I call and the old

machine picks up: Joe speaking.

I can’t answer the phone right now

but I’ll call you back as soon as I can.

Uncategorized, Writing

Back to Wisdom House: Another Try…

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Yes, I am going to visit Wisdom House again, this coming Friday and stay the weekend…

But I haven’t even told you about the first time there, so forthwith I will make up that lapse.

I had no difficulty driving up to Litchfield from the Hartford area, despite my usual tendency towards sleepiness,. This was largely I think because I left home at 8:30 a.m, an hour after waking, and got there by 9:30, well before my 11 a.m. sleepy hour when I ought never to be on the road (unless well medicated, and armed with a strong cup of coffee to boot). Barely had I gotten my suitcase out of the car and was deciding which door to roll it towards, when I heard a voice call, Hello, and saw an arm wave over the hedge.

Sr Jo-Ann is, well, I do not want to say cherubic, because that isn’ the word I want. If I use it, it would only be in reference to her size, and her positive demeanor. Very cheerful, so far as I could tell she was never without a kind smile for everyone. As for her size, well, I am not quite 5’3″ but in comparison to this tiny, tiny Dominican sister, I felt like a giantess! I do not often tower over people, but in Jo-Ann’s case, that wasn’t hard to do. 8D

Be that as it may, we went by elevator to the third floor of what used to be the convent (?) I suppose you would call it, of the Daughters of Wisdom community, first built in the 1940s as a residence and then later with a college added on to it. I must have “lucked out”  because it turned out that I had been assigned a room with a private bath; it seemed that the room had once housed a mother superior or at least a fully professed and senior nun/sister, as opposed to a novice, postulant etc. Now, the dormitories have all been refurbished and turned into single or double rooms as well, so none of the accommodations are anything but just as comfortable, but some do share bath. I had assured them I had no objections whatsoever to doing so. But as it turned out, it didn’t seem that there were many people housed very close to one another, so that shared bathrooms or no, it would have posed a problem either way.

Mother Superior’s room or not, it was just perfect for me,  and really nice. I dunno what I was expecting, a room  perhaps like what I’d gotten when I found myself at that horrible YMCA in New York City (back in the early 1990s when I was so ill and on my way “to Orlando” —   a long story) which was almost literally a cell, just a closet of a room, with a cot, a sink and a hard wooden chair, and that was it. The bed had a stinking blanket and ripped sheets and the walls were dirty and stained as well. The window looked down on a grit-filled air shaft…SO when I saw this room, with a window looking out onto the woods and grass, and a full bed with a nice bedspread, a desk and chair and a small arm chair, I frankly was in love with it immediately. Plain, yes, but exactly my “cup of tea”.

The first words I said to Jo-Ann were “Oh, how lovely,” and I hope she knows I meant it.  Sure, having done some public speaking in various places now, I know that a few hotels, like the Hilton, can be “fancier”, but in terms of where I have been most comfortable, Wisdom House beats them all. The hotels are always too cold, and too, I dunno, cold in every sense of the word, I guess…

But there is more to talk about that just the bedroom, and it is getting late so let me move on. We went for a tour of the building then, and I was astonished at how many little nooks and crannies there seemed to be for a person to hole up in and write or be alone. Now that may have been an illusion of sorts, because I was overwhelmed and it was all new to me. But it seemed that every other room that Sr Jo-Ann pointed out to me was another one she said could be used for quiet times or writing or reading. I was also very pleased by the fact that there were several places where coffee and tea was available literally 24 hours a day.

I had come a day later than others, though, so the quietness of the silent retreat was in full force. This did not prevent Jo-Ann from talking to me, not at all, though we did speak in low voices so as not to disturb the retreatants. But I came to understand that a silent retreat did not mean no one was allowed to talk, only that silence was to be respected and honored as much as possible, or at least that quiet was. But at meals, the spiritual directors usually sat in the talking dining room as did I and Joanne the other writer and Jo-Ann as well.

The first day went all right, as I recall. At least, I had lunch and sort of enjoyed meeting the sisters who were “running” the retreat, in the sense that they were acting as the spiritual directors, and it was interesting to listen to them talk. I had never had any opportunity to be in the presence of “religious” before so it was simply an experience to observe them. And hear what they talked about. But at the same time, for some reason, I felt I had to make sure that Joanne was not left out, because she was younger than I, and I always feel responsible for people. So I would ask her about herself and what she was writing and where she came from etc. And I dunno, all this socializing was tiring to me, and I was glad at least when she left to go upstairs, so I could just sit and listen to the sisters. Until I realized that they were just being polite and waiting for me to get up so they could too! At that, I immediately stood and took my plate to the kitchen, apologizing for keeping them. Which of course, they denied, but what else could they do?

The next day, well, I can barely recall Monday, in truth, except that it was harder to stay sociable and not feel ugly, not feel that I was contaminating and upsetting everyone. At one point, I even left the table abruptly, and clearly upset, not because they had done anything to me or to upset ME, but because I felt I had upset or oppressed them, obtruded in on them, and had to betake mysefl elsewhere so they would have some breathing room. That was when I began to feel I could not stand it any longer. Already the silence had begun to take its toll. I had less trouble at night, because I enjoy the nighttime quiet. But it was during the day, when people were around, but ignoring me, and I suppose ignoring everyone else as well, that it was difficult (the retreatants each had a meeting every day to speak to their spriritual advisors, but I had no one at all to talk with…which was a big problem) Finally, on Tuesday late afternoon, I had had enough, or at least I was crumbling, and called Josephine in tears. I didn’t call for any reason in particular except to hear someone’s voice and talk. But when she heard me she said, “Why are you staying if you are so upset? You don’t need to prove anything to anyone. If you do not like beiing there, just come home, they do not care, and no one wants you to be miserable there. Just come home!”

You know, ordinarily, I would not have listened to her. I would have felt that there was indeed something to prove, that I did have to stay and make myself do what I did not want to do, to “prove to myself” if to no one else, that I could force myself to do what I did not want to do…i.e. punish myself, discipline myself, stick it out, despite my discomfort and misery…all the old sadistic childhood lessons. and because I think if it feels bad, if it is hard for me, it is probably GOOD for me, rather than just simply something I do not enjoy…

For some reason, though, this time I heard Josephine, I heard the sense she made when she said that NO ONE CAREs if I proved anything…No one wanted me to prove anything and I was NOT in fact proving anything to anyone by staying. She was right. She was absolutely right. All I was proving that I could make myself miserable yet again. “Go ahead, pack the car and call me when you are leaving,” she said, and I finally answered, “Okay, you are right, I am on my way. I’ll call you when I am in the car.”

Luckily, I thought, everyone was at afternoon mass for the first half-hour of my packing up and carrying things to the car. It was only during the final trip to the parking lot, when I carried my pillow and sweater out, that anyone saw me. I kept my eyes averted and my head down, pretending nothing was wrong. Why make eye contact now, when it was too late? But I did catch a glimpse of Joanne, the writer, sneaking her dinner on a plate and bringing it upstairs to her room. I wondered whether she was too busy writing to eat in the dining room, or if perhaps she was as miserable as I was…

Finally I was ready to drive off. Just as I was about to  call Josephine to tell her I was on my way, I thought  about Sr Jo-Ann and decided I really ought to tell her I was leaving. I knew in my heart that she would not try to make me stay and would not reproach me for leaving, but I was embarrassed for her to see that I was quitting, frankly. And I didn’t want to be a burden on her. That was what stopped me from trying to find her in the first place. I called her this time though.

“Pam, is that you? Would you mind if I came out to the parking lot to say good-bye?” Jo-ann asked.

“No, not at all.”

I stood up outside the car so she could find me, and by the time she approached me, I was in tears all over again. I am afraid I cannot now remember why, except that partly what upset me so, aside from the sheer loneliness and isolation, was that being there with all the sisters and the religious aspects of the place, had brought up a lot of memories and old feelings in me. Maybe some not so old feelings as well. I had been reading Thomas Merton, or trying to, and yet the very fiirst pages of his journal, Entering the Silence, about his “becoming a writer and a monk” were so terribly disturbing and even destructive to me that I could not bear reading any further.

I spoke to Jo-Ann about all this, and about Joe as well, and about our small argument and my big reaction to it, my exhaustion and inability to decide how to have a life in the light of his Lou Gehrigs disease and whether I had a right to one at all…Well, needless to say, if she hadn’t been enormously supportive and wonderful, I would not have made it clear that I would love to come back there for a “second chance” this weekend. No silent retreat this time, either. This time the N.E. Choristers and singing will fill the rafters. Which should be jolly  to the max. I look forward to it, but if for any reason I can’t stand it again, (which I surely hope will not be the case) I now know that I can seek out Jo-Ann, one, and, two, that it is perfectly okay to say, Enough is enough, and go home.

Poetry, Writing

“NEW” POEMS FOR WAGBLOG

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These are admittedly older poems once-published, but they are the best I can offer at the moment for the reasons I explained, that contests and publications insist that any poem one sends to them never have appeared anywhere else before, including on the internet. Needless to say this is a major bummer, since my blog can hardly count as publication nor pose as wide distribution, seeing as how I get maybe 100 hits max a day (mark you, all, including you, my loyal lurkers, are oh so valuable to me, and if you remain my site’s only visitors, so be it. At least you are there and if so, that will be enough for me.)

The first poem describes a real, which is to say, factual incident that happened to me some years ago, while the second concerns, as may be obvious, a complete fantasy, but one embedded in the real  exercise of learning CPR. I describe it literally, as it was taught back in the 80s without so much as a dummy to practice on. I will continue to add others, either at the end or later, if I can find others that have already been published, or that I am certain I will not try for. For now, I hope these have some merit, despite their age.

POEM FOR REGINALD

It is winter, four o’clock in the afternoon.

A drunk, not yet dead on his feet,

accosts me, says,

“Hey, are you a college girl?”

I am not a student anymore—

It has been years since I went by bells

from room to room,

scribbled frantic exams

in booklets bound in blue.

I look young, I know that. My hair is not

yet gray, and perhaps that is why

he asks the question.

“I read books, too,” he tells me,

falling into step beside me

though he had met me coming the opposite way

and I am hurrying to be out of Dutch Point by nightfall.

He walks me all the way up to Main Street.

accompanying me through the backyards of tenements

past lounging men who might have wished me

less than well.

Though he insists on staying on my right side

like a gentleman, some primitive fear

urges me to shift my purse

to my left shoulder.

He is a genius he tells me, and I believe him

But he is an alcoholic and his breath smells

as if he has been drinking.

Still, I am not afraid of him

and when he asks, I tell him my name.

There is something sad about him.

He says he thinks I can cure him,

could marry him.

His name is Reginald.

He speaks like an old friend

and suddenly I am lonely too.

That is all. There is no moral to this tale.

I am thirty-five, single, childless, and lonely as a drunk

offering me company at Christmastide.

We come to my building. He leans closer.

When he hugs me

I hold on tight.

ON LEARNING CPR, 1986

So many things can go wrong

and it is surely a wonder

we live at all.

Playing dead, my partner, my spouse

does not answer when I

jostle him at the shoulder

speak his name

and I in more terror

than my own body needs

this being a dry run

and he healthy as apples.

But he has taken on

the “death-like appearance”

necessary for this role

and I must act,

pretending dexterity and expertise

when my own heart

threatens to shudder and fail

if I can’t get it right.

According to the booklet

the Red Cross has given us,

brain damage occurs

after four minutes without

oxygen. It is up to me.

And so I do as I must,

feigning compressions of his chest

making his heart beat for me

at the rhythm I choose.

I scarcely brush his lips

with my own in pretended ventilation,

but breathe on his cheek

and scout his chest

for  signs of life returning

So much I have taken for granted—

I am scared by the awful fragility

in the balance of one life before me.

Then miraculously, he revives.

I can see his chest rise and fall.

I feel a pulse in his neck

and moist air on my cheek and ear.

“Thanks, love,” he whispers,

with a smile no one else sees

and sits up.

It is over.

But tonight while he sleeps

I will count his breaths.

I will touch the pulse in his neck

gently, gently. I will know

the miracle when I see it.

Art and artwork, portraits, Uncategorized

Newest drawings

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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…

Art and artwork, Brain, portraits, Uncategorized

NEW DRAWING: Elder Woman

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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…

Art and artwork, Book, Narcolepsy, Poetry, Uncategorized, Writing

Trip to Wisdom House

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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!

Art and artwork, Uncategorized

Pencil Drawing: Gaia’s Last

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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.

Art and artwork, Occupational Therapy, portraits, Psychiatric Unit

Collage of Christabel: Middlesex Occupational Therapist (finished)

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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.

Blog, Psychiatry, Schizophrenia, Uncategorized, Writing

Delusions of Grandeur

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To all whose websites I had linked to, I had to take them down because my email was hacked, but I will post them again soon. The email problem is completely resolved now.

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First I will paste in what I wrote back in 2006 about Delusions of Grandeur, henceforth  reduced to the easy-to-understand shorthand, DoG. (Sorry, all you dog-lovers out there!) Then I will elaborate and/or explain where I differ in my thinking now.

From July 2006, then (with a few edits for easier reading):

Delusions of Grandeur

Where do they come from? Mine were usually of a negative grandeur as you know. I was  the devil, the most evil person in the world, I needed to kill myself or burn myself to a crisp in order to save the world from my poison. I even went so far as to set my leg on fire, prelude to setting myself on fire in order to do this, and burned marks on my forehead to prove I was Cain, so people would be warned and stay away…as a result I have had ECT, been restrained, isolated, locked up for months and all the other humiliating things they do to people they think might seriously hurt themselves or others. And obviously I might have, and did. But whence came this sort of thought? And why do others believe they are God or Jesus Christ or as one person I met claimed, the song-writer who provided John Lennon with his music. Their delusions may seem more positive than mine, yet I know they suffered much as I did, probably because they too went unbelieved and scoffed-at. Where does this kind of false belief, clung to in the face of so much evidence to the contrary, come from?

I’m not completely sure but DoG seem, both in their positive and negative incarnations, to derive from a terrible feeling that you lack self-worth in the world, your secret knowledge — if you have SZ or another devastating mental illness, that it has robbed you of everything you were supposed to have, be and do, that you are entirely useless and empty and without value in life. The illness itself produces this feeling, and the feeling is secondarily strengthened as a result of having the illness. People who develop DoG respond to their feelings of worthlessness  with the conscious or unconscious fantasy of a powerful false-self to make up for the lack of real power — to do, to be, to create in life. Others, like me, accept our lack of value, only we exaggerate it until it becomes the dominant factor in our lives and colors everything, so that we cannot but refer everything to it and see all through its lens. We become convinced that if everything in our lives is contaminated by our worthlessness, maybe everything in the entire world is contaminated as well.

I don’t understand the transition from feelings of worthlessness to actual belief in false and grandiose facts, the transition to delusion. But I believe the connection is there, from lack of any sense of self-esteem transitioning somehow to delusions of grandeur. And that either positive or negative delusions all derive from a negative feeling, a lack of positive self-regard. I don’t think anyone who truly feels good about him or herself would ever suffer in such a way…

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I must have gotten tired near the end there, as it feels to me as if I simply gave up midway, and relinquished my train of thought, and my pen, so to speak, before I’d even tried to finish. Be that as it may, on rereading the piece, my first impression, the first thing that struck me and struck me with a punch was my use of the past tense when I was describing my own experiences with DoG. This seems to me, even now, as stranger than strange. Does it mean that there was actually a time, and relatively recent to boot, when I did not believe myself to be the devil, not feel that I was evil, did not secretly want, though in a controllable way (controllable in the sense that I will not do it, so fearful am I that it would eventuate in another terror-filled hospital stay…) to destroy myself via the flames? So it seems, but if so, I have as assuredly forgotten how that felt, how such thinking was as an experience, as I have the entire 6 weeks I spent in the hospital this past April and May. Which is to say, “utterly and completely.”

What I can say now, is that it is much harder to write about DoG at any distance, or with any real so-called insight into myself (despite reading my own words) because the feelings of evil and worthlessness I wrote about in the past tense then are so strong now, in the 2010 present. I won’t, at this time, ask (rhetorically) What happened? That is for another essay. But I will admit that for me to continue with this discussion I will have to refer to what I have observed about others and their DoG, rather than any I may or may not experience myself.

Zo! Here are basic definitions, lest you have forgotten them. For my nutshells, I quote the online Free Dictionary (thefreedictionary.com).

Delusion: an idiosyncratic false belief that is firmly maintained in spite of incontrovertible and obvious proof or evidence to the contrary.

Delusion of Grandeur or Grandiose delusion:  delusional conviction of one’s own importance, power, or knowledge or that one is, or has a special relationship with, a deity or a famous person.

delusion of persecution a delusion that one is being attacked, harassed, persecuted, cheated, or conspired against.
delusion of reference a delusional conviction that ordinary events, objects, or behaviors of others have particular and unusual meanings specifically for oneself.
Now, thinking about the problem I had when I first wrote about DoG, take that fellow I met, the putative song-writer of all John Lennon’s songs. He was not a happy guy. He gave not the slightest appearance of being thrilled that his songs were so popular and that Lennon had chosen them out of all the offerings he could have picked to sing and record. He claimed that he had given them freely, and wanted neither fame nor fortune, as I recall. But what troubled him, it seemed to me, what that “we,” the — I dunno what you would call “us” — ordinary people, not the rich and famous, not the celebrities with whom Lennon would have hobnobbed, but the (where did I get this word?) lumpen-prole. Actually, I think it was rather much smaller than that, even. I think what troubled him was that  other patients and staff members in the hospital (at that particular time) didn’t care, appreciate, value or even believe his great contribution to the musical world. Nevertheless, despite the use of very controversial ECT (shock treatments — which were rarely used in schizophrenia, and even today are not used often for SZ) his delusion persisted throughout his stay, and by the time I was ready for discharge after 2 months, he was being transferred to a longer stay facility.
Needless to say, whether a delusion of grandeur is “positive”, which is to say that the power one arrogates to oneself is “good” –one is God or Michelangelo or John Lennon’s songwriter, or whether it is “negative” in the sense that one believes one has the power of The Black Plague, the Great Influenza or Satan etc, there can on occasion be little else to distinguish them. Unbelieved, scoffed at, dismissed, ignored,  no one thrives. For some reason too, and again this is solely from the point of view of my experience, people with schizophrenia experience this dismissal, this isolation (from and by others) much more often than those with bipolar illness. This is not so incomprehensible either.
Someone who experiences mania may and often does espouse vastly grandiose delusions, but they can at first be so ebullient, so enormously cheerful and expansive (I think of poets such as Walt Whitman, whose Leaves of Grass, written and rewritten so many times, and so long and expansive itself it almost screams manic-depression — if you can forgive an exceedingly amateur diagnosis) that people are drawn to them, at least at first and for a time. In the grips of mania, a person can convince “anyone to do anything” they are that persuasive and indeed charming, in every sense of the word. But at a minimum, most do not drive everyone away from them, not at least in the beginning. So when a manic person says they wrote the songs that John Lennon sang, one is tempted to at least half believe them, and say, “Hey, you did? Cool! Tell me more.” But that fellow in the hospital, no one so much as listened to him, nor gave him the time of day when he went into his “thing” about Lennon’s songs, and so he was simply left alone to talk to himself.
Hmmm, have I wandered off the topic, or gone too far astray from where I was supposed to be heading? Well, if I have, forgive me. It’s the sort of thing I do all the time in my journal, and frankly it is far too late at night for me to remedy it, alas. So I will stop here, take a stab at proofreading, and hope I have written at least a few things for you to ponder.
As you know, I will be away from the 14th through the 21st, at the Writers’ Fellowship, so if I do not write before then, never fear. I shall write when I get home. (On the other hand, since a Silent Retreat will be going on at the same time, and since there is also Wi-Fi connectivity in the main social area or somewhere — and no one there to socialize with, who knows, I might even avail myself of the internet, and post something from there!)
Get to bed and sleep tight, all youse who are still up with me.
PS I do not know why the paragraphs in the last half keep running together but they simply will not separate no matter how many spaces I edit in between them…sorry!
ALS, Art and artwork, Uncategorized, Writing

Writing Fellowship at Interfaith Center

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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.

Appetite, Blog, Eating, Medication, Nutrition, Schizophrenia, Uncategorized

My Pyramid Tracker, plus Another Medication Change

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Before I tell you about the most recent medication change, I want to let you know about  My Pyramid Tracker at  http://www.mypyramidtracker.gov, a website of the USDA’s Center for Nutrition Policy and Promotion. My Pyramid refers to the new and improved USDA food pyramid (http://www.mypyramid.gov) which, by the way, recommends only five and a half ounces of meat or beans a day, which is just a little over a quarter of a pound. The pyramid tracker website is one I highly recommend, however, especially  if you are interested in losing weight or in keeping track of what you eat and how much you exercise. In fact, it is a website worth looking at even if you are only curious about how many calories you expend in everyday activities. You can use it  every day or once a week or on any schedule you choose, and all you need to do is follow the easy instructions at the end of any given day to see how you did, though it helps if you jot down what you eat during the day, so you don’t forget entirely. Every time you log in, the site keeps track, so you can see stats later on about how you are trending.

My Pyramid and the Pyramid Tracker are great sites for general nutrition info, calorie calculation and the general calculation of energy expenditure in your daily life. You can compare what you expend to your daily calorie requirements. That is, by counting such activities of daily life as dish-washing and childcare and yard-work as forms of exercise the site will tell you how many calories you expended on them. It also calculates your BMI — body mass index — your ideal weight, and how to achieve it as well.

Click this

If you happen to be interested solely in finding out how many  calories are in a given food, however, the Nutrient Data Lab website is great. It has a large number of brand name foods as well as fresh and raw foods as well: http://www.nal.usda.gov/fnic/foodcomp/search/index.html

Should you be on medication that causes weight gain, or makes it difficult to lose what weight you formerly put on, check out those sites (above). They could make a big difference, or at least be a helpful tool in your efforts to keep your weight under control. But two things nonetheless are very important:

Please, do not beat yourself up if you cannot lose weight.

Remember that will power is a matter of chemistry, not bad character.

In fact, in FACT, it is your meds and the chemical changes that they produce in your brain that has caused you to gain weight. It is NOT your schizophrenia and it is NOT your fault. Do not believe whatever they say about research “proving” a close link between your diabetes and your having schizophrenia. That is utter B.S. Diabetes is on the rise everywhere in the country and its increase is directly related to obesity: one gets obese because one eats more calories than one expends. Being more than a little overweight is known to be a huge factor in Diabetes, type II (insulin insensitivity).

Now it is true that you might have been or become overweight without the meds, but I assure you that certain meds all but guarantee it. When researchers have the gall to say that somehow obesity is directly or in some sense causally related to schizophrenia, or that diabetes is genetically connected to schizophrenia, that is a load of hogwash, and I suspect those researchers are on the take from certain well-known drug manufacturers. I’ll bet that for many of you who were once thin before you took medication, whether it was the older drugs or the newer atypicals, it was only when you started taking antipsychotics (and some antidepressants as well) that you began to gain weight, sometimes massive amounts. But “they” want to tell you that it has “nothing to do with the meds” no, it is YOU, it is your illness, not the Zyprexa or the Seroquel or the Risperdal that caused the weight gain, or for that matter, not the Thorazine or the Mellaril or the Prolixin. We know better. They also want to tell us that if we die 25 years earlier than our peers, that is our mental illness speaking or our own fault (somehow) and not their iatrogenic — that is to say, medically-caused, doctor-caused —  drug-related obesity, diabetes and heart disease. I won’t even mention the generally dismissive attitude of many doctors towards the physical complaints of anyone with a major psychiatric diagnosis, it is no minor problem.

So, what to do? Well, there is not much you can do at this time, if you have found a med that works well for you and are able and willing to tolerate the weight gain and potential side effects from it. In some ways I admire those who will make this trade-off, though I worry that they will lose their new found lives early because of it, in which  case is it really worth it? But I know that for some people it indeed is, and I would never question their choices. For me, I am lucky enough to have responded to at least one less-weight problematic drug besides the miracle drug/drug from hell Zyprexa, which is the combo: Abilify/Geodon. The Geodon by itself seemed to me virtually worthless, at least it seemed to do almost nothing for me in terms of improving my cognition or creativity. The Abilify vastly increased my cognition and such, but at the expense of extreme irritability and rage. However, the serendipitous co-administration of the two solved the problems of each so that now I can feel creative and cognitively less impaired (I still cannot read, alas) and yet I am not at all irritable or enraged. Added to that is the fact that my appetite is under control again. While I have not yet started to lose weight, which is already at a decent level, according to most people (just not me) I no longer find myself raiding the fridge constantly or exhibiting uncontrollable food-seeking behavior all day, hungry or no. It feels much better not to feel yanked around by the nose by a med that never let me feel in control of myself…

But what happened to the Saphris? Well, two things: one, I simply could not sleep, and that is a weird thing for someone with narcolepsy to complain of! It was great to be awake all day, but I was awake all night as well. I would but up except for an hour or two for days on end, and it was exhausting. But worse, according to my psyche, was the fact that I ate less than 700 calories a day, walked 8 miles a week, — keeping track via mypyramidtracker.gov and the nutrient data lab — and yet after 2.5 weeks, I didn’t lose a single pound. This was so terribly depressing that I had to change it, had to go back to the Geodon and Abilify on which I got to the weight I was truly comfortable at a couple of years ago…Now, though, I have to try hard, and i will, because I am determined to get there. My father is always saying, Appetite comes in eating. Well, he is absolutely correct. But the opposite is also true, because the less I eat, the less I want, and the more I forget to eat, the more I, well, forget to eat…As far as I am concerned that is fine with me.

I think that is all that I have energy for today, because I want to continue to read Karen Sorensen’s site and blog, which I haven’t seen for a long while. Her art is so creative. It might be called, as my professionally trained artist friend said, Outsider Art, but nevertheless she has such an imagination that I feel stunned. I simply cannot let myself go and “let it all hang out” as we used to say in the “old days.” I don’t know how to do it, not graphically. Not pictorially. I am so hung up on getting my pictures and portraits perfect that I cannot relax and let my mind run free. I can do so in poetry, let things happen, and to hell with what my inner self is “really” saying, Let the shrinks figure it out! But in a painting or collage, I have to be in control, I don’t know why. Perhaps because I am so new at it…?

Thanks Karen. I love your gallery, where I can “flip through” your art works and see them en masse.

I also have to visit Kate Kiernan’s  Ying and Yang blog as her writing is as good as her art, which is saying a great deal. I am not sure which I like better, though I don’t really need to choose, as her writing is very different from her paintings. Kate is also a terrific songwriter/singer as well. On her blog you can sample all three. She is truly one of the most talented people I know.

You can find both Karen’s and Kate’s websites on my sidebar.

Art and artwork, portraits

Klimt Collage: “Using Klimt” (updated post)

2 Comments

Hi

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.

Appetite, Eating, Medication, Mental Health, OCD, Uncategorized

The OCD Project on VH1

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I have to tell you that I do not usually watch VH1. In fact, thinking that it was always and only a music channel, and moreover that it featured music of the sort I do not generally enjoy, I have never watched it. But I was up all night last night because I couldn’t fall asleep and I was channel surfing, trying to “bore myself to sleep,” only to come across their amazing program, The OCD Project. Yes, it is comes under the rubric of a “reality show” and the OCD sufferers featured might in fact be “on stage” in the same way that I suspect those  “Housewives of New Jersey” on Bravo Channel are (the dames in that show must be acting, they are so ridiculous!). But it is hard to believe this is the case. Even if I am wrong, it doesn’t matter, because if they are performing in any sense of the word, the enactment of the disorder of OCD is so compelling and the treatment so gritty and potentially life-changing that I am going to recommend it to everyone who happens across this post.

Please, whether or not you have schizophrenia, bipolar or Lyme and you have come to this site because of those: if you have any interest in or symptoms of OCD, check out THE OCD PROJECT at the following link. Once there, scroll down to the links to the full episodes. Click on Episode 101 first, then the clips to 102, then the full episode 103 and you will be all set for Episode 104 when it appears either on TV or on the website.

Good viewing! I think you will be impressed and may learn a lot. I know I did. Let me know what you think.

Perhaps more important, let the producers of the show and of VH1 know your feelings, because such programming about mental illness is so very important and their efforts in that direction ought to be encouraged.

http://www.vh1.com/shows/the_ocd_project/series.jhtml

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Brief update:

The Saphris and Abilify continue to do me good without causing any particular harm or objectionable side effects. Except for the pills’ bad taste and brief oral anesthesia after taking Saphris –surely a tiny price to pay for what seem to be big benefits — I can’t think of anything I would improve about it. Perhaps it would be good to feel inspired to get back to “doing artwork” again, which has not happened. Not yet.  But I think this may be due to the fact that I have been focusing on writing poetry to the exclusion of almost everything else. On the other hand, I can read, a little, which is good, though it takes some effort to sit with a book and concentrate. When I decide to make the time and do it, I can. I am also, I think, losing the weight I gained on Zyprexa, slowly but surely, which is only to be expected, since the Abilify has all but caused my appetite to vanish completely. I am back to forgetting to eat, rather than emptying the fridge at all hours of the day and night.

That brings me to the subject of another post I will write soon: how drugs affect the appetite and how my experiences with Zyprexa and Abilify make me certain that while appetite may be all in the brain, it is “brain-chemistry” for everyone, even for those who do not take medications. It has virtually nothing to do with so-called willpower.

Mental Health, Psychiatry

Saphris trial plus Poem

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Sorry for the long absence. I was in yet another Connecticut hospital for 6 weeks,  and as usual it was horrible. I admit that they — the staff — must have hated me as much as I hated most of them as well. I do not think that they understood quite how much I was “not myself”  most of the time I was there. Luckily, perhaps, the weekend doctor was one who had treated me years ago and for several years at that, and she said quite openly that she had never seen me like that and knew something was wrong. But the other staff did not know me and so they took my rage and irritability as “bad behavior,” as one nurse called it. Why it didn’t occur to them that there was something strange about the fact that I didn’t even remember from day to day what had happened or what “I did” I do not know.

Anyhow, now I am  on a trial of Saphris but I do not think it is going well. I cannot motivate myself to do much of anything, including writing, reading or any kind of art. I even look at my beads and wonder what on earth ever possessed me to want to do jewelry making. I am hoping that I will be switched back to Abilify soon (not Zyprexa on which, after the hospital, I gained at least 10 pounds). At the very least it must be added to the mix. Otherwise I do not know what I will do. Dr B and the visiting nurse probably will not agree, feeling as they do that it does not work for me. But I think it does and frankly I will not take anything else, so it is the Abilify and the Geodon, or the Abilify and the Saphris, or nothing at all.  There is nothing else that works at all that I will take.

I will also add that after struggling to feel that Dr B was helping me, and that he “cared,” I have decided that we do not work well together. Maybe some other male psychiatrist and I would, but for now I am switching over to a female doctor, Dr C.. She seems very nice, and if she and I do not work out, there is yet another that seems promising. But so far I felt very good about Dr C right from the start.

So for now that is all that I have the energy to write. For the short time that I was on Zyprexa right out of the hospital I wrote a poem called, “How to Swim: Poetry Manual #2”, and I wish I could share it here, but I have sent it out for possible publication and I do not think the magazine would appreciate it if I printed it here first (they are fussy about things like that, alas.) So I will leave you with one that I think will go into my second book but which I probably won’t publish before then instead.

ARTICLES OF FAITH

Black ice. An accident’s chain-

reaction like toppled dominoes,

and you steer into a skid

on the frictionless slick

missing, by the merest sleet needle,

a chrome-crumpler 28 cars long. It’s night,

your face glows dashboard green

touched with gold as we pass

streetlights in review.

Someone up there

must be watching out

for us, you say, meaning you,

me, and this carcass of a 1986 Chevy,

in ‘03 still too good to let go.

But it is something more than

mischief in me when I remind you

of the 28 drivers whose cars accordioned

in the whiplash of impact.

Was the the big guy upstairs

not watching out for them, then,

or worse, deliberate in his neglect?

But this is not a theological poem,

it is only a prayer whistled

devil-may-care into the void

by a nonbeliever who knows nothing

is guaranteed save that none of us

will survive our lives. The pile-up

behind us, we’re wowed breathless

by the nearness of our miss

and though there’s still

the matter of those hapless 28,

even I whisper Thank God!

to still my trembling hands.

(When I pasted that in it came out in double space, but it was meant to be single spaced. Not sure  how it will appear in the blog…)

That’s all I have the energy for tonight. When I have a little more, I will get back to you. Please do not give up on me. Thanks.

Pam