Art and artwork, colored pencils, Drawing, Hartford, Mental Health, Recovery, Schizophrenia

ART SHOW IN HARTFORD

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Open Studio Hartford is a Hartford regional event that celebrates the arts!

This celebration of the arts combines art of all types and presents it to the community. For a full weekend in November, artists open their studios to the public or show in Hartford locations. Their wish is to inspire the community, make others aware of their work, and sell their art. Visitors enjoy the opportunity to meet local artists at studios, galleries and creative spaces in and around Hartford to browse and buy locally created art. The public also experiences live artistic entertainment at some locations!

2011 Opening Reception & Kick-off
Thursday, November 3rd, 6pm – 8pm
ArtSpace Gallery, 555 Asylum Street, Hartford, CT 06105
This year’s theme is “Double Digits”.
Parking: Park at Union Station, discounted rate provided by the Greater Hartford Transit District
The reception, featuring live music, will be produced by Artists in Real Time, Inc. and sponsored by local restaurants.

22nd Annual Open Studio Weekend in Hartford
Saturday & Sunday, November 12 & 13, 11 AM -5 PM
A self-guided tour of creative spaces that has taken place annually for 22 years, Open Studio Weekend is a creative showcase for local artists, produced by the nonprofit 501(c)3 organization, Artists in Real Time, Inc. Locations are open around the city and greater Hartford Region; thousands of attendees are expected.
FREE Event!
Parking: Park at Union Station, discounted rate provided by the Greater Hartford Transit District

 

Needless to say, I think, I will be exhibiting my artwork here, some of it about schizophrenia, some of it from schizophrenia, and a great deal of it about and in recovery. If you are able to attend, look for me on the 4th floor of ArtSpace, Hartford. Hope to see some of you there!

Book, Health, Mental Illness, Poetry, Schizophrenia, Uncategorized, We Mad Climb Shaky Ladders, Writing

Poems about Schizophrenic Symptoms: Word Salad and Delusions of Grandeur

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Poems can express many ideas and experiences. In my first book of poems, We Mad Climb Shaky Ladders, part of CavanKerry Press’ Laurel Books literature of illness series, I tried to express how I felt both during psychosis and afterwards. I also often tried to put myself into the experience of others who experienced symptoms that I might not, but which I could imagine.

One thing I know, having had this illness for so long, is that misinterpretation is rife. I mean things when I do things, just as anyone else does. But people simply make assumptions about my behavior and forget that they might need to ask why I do what I do. I have often asked others why they did whatever strange or seemingly outrageous thing they did, and lo and behold there has always been an understandable rationale behind it. For instance, when I stripped naked in that freezing seclusion room, I was neither “acting out” nor totally around the bend, no, my reasoning was that if I were naked they would have to give me something to cover myself with, i.e. a blanket, which is what I had been begging for all along. But they never asked me why I had taken off my clothing — a flimsy tee shirt and lightweight jeans. They just assumed — whatever they assumed. Ditto for almost every other interaction I had with them, and the same almost uniformly went for other people when they behaved in a way that was somehow contrary to expectations. The meaning of their actions was reasonable, given the context.

I tell you this because in my poem, Word Salad, even though it appears to be, well, “word salady” and incomprehensible, in truth there is “method” to it, and in fact if you read it with a mind towards understanding the links, you would appreciate them. But you might have to “surrender” to getting it, and let it in without trying to rationally, intellectually understand. Only afterwards could you perhaps try to figure out what precisely is being done and said in the poem. One clue you might need, if you have not been subjected to this directly is that often, at least in the past, “patients” of a certain kind were asked to interpret proverbs. “Can you tell me what, ‘A rolling stone gathers no moss’ means?” or “What does ‘People in glass houses shouldn’t throw stones’ mean?”

As for Grandiose, the same thing holds. Read it aloud and try to get the sense of it, how it reads. Then you may in fact understand what is going on “in one blow,”  so to speak. It is full of double entendres, on purpose. Remember that “live” can be pronounced in two ways. Both of these hold.

WORD SALAD

“Word salad,” a term used for the completely disjointed, incomprehensible language sometimes seen in schizophrenia

Unpinned, words scatter, moths in the night.                                                                      The sense of things loses hold, demurs.                                                                     Everything means. Numbers soldier
with colors and directions, four by four
in a pinwheel: this is the secret wisdom.
I inscribe it on sacred sheets of paper.
The Oxford Dictionary holds not a candle.
The self reduced to a cipher, a scribble,
the Eye is all, with a Freemason’s lash,
and 26 runic hieroglyphs to share
how a stitch in time saved the cat
and if a messy rock gathers no stones,
clams must surely be lifted higher
by the same rising boats. Why, why not throw
glass tomes at grass huts? It is a question
of propriety: grass is too dignified to lie down
before gloss. Whirligig! How to pull the center
back into the world? It would take all
the OED to recapture the moths, all Harcourt’s
English Grammar to pin them again.

GRANDIOSE 

He says:
I was always more important than you though
with your cutting me down to size quarrel
about just who I thought I was. I thought I was
with my long dark hair and beard and rough
working clothes John the Baptist, prophet of God
wild man of the wilderness and would have
to preach the word of a savior I didn’t quite
believe in. I mentioned my conviction to a friend
who told me to make friends with a mirror,
discover which John I really re-incarnated. Lo,
I looked and saw the more famous than Jesus
John staring with his small important eyes
behind his too small eye-glasses at me staring
into the mirror at myself, yes, I wrote the songs
you grew up on: Yesterday, Give Peace A Chance,
Eleanor Rigby— yes, I was the one you swooned
over and screamed for, yet now you only shriek
at me, taking me down from a peg on the wall.
Why do you yell, Get lost, baby? Imagine all the people
who would rejoice to see me live once more.
Hospital, Mental Health, Poetry, Psychiatric Unit, Seclusion and Restraints, Uncategorized

Video of Poem: “How to Read a Poem” plus Update

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I am not sure what to think of this video. I certainly did not give permission for it to be used, nor did I approve of the final product. But I would welcome all opinions, should anyone wish to share. Please do not click on Like or Dislike buttons to give opinions. That only tells me you dislike my posting it, not the video itself…But maybe I am too sensitive.

I see that it will not insert directly here so I am placing the link to it here instead.

HOW TO READ A POEM: BEGINNER’S MANUAL

 

First, forget everything you have learned,

that poetry is difficult,

that it cannot be appreciated by the likes of you,

with your high school equivalency diploma

and steel-tipped boots,

your white collar misunderstandings.

Do not assume meanings hidden from you:

the best poems mean what they say and say it.

To read poetry requires only courage

enough to leap from the edge

and trust.

Treat a poem like dirt,

humus rich and heavy from the garden.

Later on it will become the fat tomatoes

and golden squash piled high upon your kitchen table.

Poetry demands surrender,

language saying what is true

doing holy things to the ordinary.

Read just one poem a day.

Someday a book of poems may open in your hands

like a daffodil offering its cup

to the sun.

When you can name five poets

without including Bob Dylan,

when you exceed your quota

and don’t even notice,

close this manual.

Congratulations.

You can now read poetry.

https://www.facebook.com/video/video.php?v=1759323499617

_______________________________________________________

As for the update, well, I sent most of the important material from which I derived the last blog post about the restraints episode to the Office of Protection and Advocacy and by the afternoon of that very same day, I got a call from them telling me that they were going to do an investigation! Not maybe, but yes. This was quite a surprise. I did not expect to hear from them so soon, much less so definitively. They do not take every case after all,  but pick and choose from the many complaints that come their way. I have run into so many roadblocks that I was afraid that there too I would be shoved aside for other more important matters. But no, I think they too found this matter outrageous.

So I will keep you posted as to what happens. They want access to my chart, which I will give them, but I will also fax them the pages from my journal too, as I want them to have contradictory accounts to counter what the “official” record says. Though that says enough that is not quite legal by itself.

I have been cleaning my apartment for 2 days and it is still a wreck, but I need to frame all my artwork for a show I will be doing in early November, at OpenStudio Hartford and I cannot do anything until I have space in my apartment. It is getting better, at least there are “paths” to walk through! But there is still a lot to be done, and I am already very tired of cleaning. How on earth do I make such an atomic mess of things so often? So needless to say I cannot write  much today, but I did want to let you know of this latest development.

TTFN or TaTa For Now

Acceptance, Health, Mental Health, Mental Illness, Reflection, Trauma, Writing

Psychiatry and Authority: Restraints Update

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I want to update my “On Psychiatry and Authority” post, especially about what they did to me at “MIddlesex Hospital, which I can now do with more accurate data. I gleaned a lot of the following directly from my records, meaning both the nursing and progress notes and the “event” notes, which should have been written after each and every incident in which they felt obliged to use measures against me involving involuntary seclusion or restraints, including such things as: physical/bodily/painful holds, physical/bodily/forced escorts, physically preventing me from leaving a “time-out” room, i.e. a seclusion room, as well as a locked door seclusion or the dreaded four-point restraints . I have also used my own journal writings here as counterpoint, some entries of which were penned as soon after these things happened as possible — that is, when I could obtain a writing implement.

The first time I wrote about the particular incident I focus on here, I did not understand why I was naked. Having read my entire medical record from the stay, I now understand more about what happened, so I will start this account where it really began, somewhat earlier in the day. Also, and this is important, while they perpetrated a criminal act on me in this incident, there were others later ones as well. During those, I am described in words that make me sound as if I have gone something near berserk…though not in those words of course. Now, there is no context given, nothing is said, not a word, of what the staff is doing TO me or with me at the time that I am going so wild, but nevertheless, the chart describes me as biting and kicking and screaming and peeing on the floor and smearing urine all over the walls…and then there are repeated use of restraints and locked seclusion where neither were “necessary” and were always destructive and traumatizing. Well, unfortunately I have no journal entries after that first time. Why? Perhaps because by then they had drugged me up on Keppra (having decided I could not take the 2 separate ones I came in on though they worked fine and without side effects ) an anti-seizure med that made me so dizzy I literally could not walk, and my vision so blurry that I could not write even if they had not prohibited the use of all writing equipment. So I can recount here only the most egregious incident, the one that I believe triggered for all the others that followed, the one after which “all bets were off” as to any future “behavior” on my part, and from which I emerged so traumatized that I didn’t give a hoot what they did to me after that…

Before I get to  it though, I want to briefly recap where I am in my struggle to recover from the trauma that this stay at Middlesex Hospital occasioned, which only increased the trauma already inflicted 6 months before at Manchester hospital. Up until the night before last, as you know, my state of terrible upset had been growing worse and worse, so that I’d gotten to the point where I could scarcely think about my 6 week stay at Middlesex without becoming nearly hysterical with trembling and anger and anxiety and terror all mixed up together. I  felt as if death impended, my heart pounding wildly,  fear screeching like a car swerving at high speed until it nearly hit a bridge abutment. Every night, every day it comes back even now (new edits 3/2012) as if happening again. Then one night, I wrote the blog entry about Trauma and Acceptance, and I began to try to think about things differently. I realized that I could parcel out thinking about Middlesex little by little so the trauma of it didn’t have to eat me alive. I realized that I might be able to save my sanity, and spare my life from total destruction at the same time, if I decided to accept what I could not change, the first step of the Serenity Prayer.

Wonder of wonders, after two days of not letting the trauma appear on my radar screen, except insofar as I gave a talk about it for the Farmington, CT, NAMI book club last night, which included reading the Acceptance blog entry as its conclusion, I have made an astonishing discovery. Up till now I had had almost complete amnesia for the Middlesex hospitalization. However, it seems that as I remain or try to remain calmer, certain episodes are coming back to me. Not fresh, not by themselves, no, but when I read in my journal or even in the records something that I did not recall on my own nor even believe was true it feels, well, possibly real, and I can just begin to “get” a sense that indeed it feels familiar, that perhaps I did do that, did say that, that it did happen, even if I would not have remembered it without the journal jogging my memory. I am wary of induced false memories, but in this case since I have records of the bare bones of what did in fact happen, I have to try to trust that at least some of what I am retrieving is not pure confabulation woven from only my imagination.

I cannot bring my mind any further down that memory path yet. But I suspect now that I formed some memories after all, that they are simply buried for some reason, and that perhaps the trauma and fear have kept them from me. Now that I can relax a bit and not feel so angry and terrorized by my amnesia and by the one clear memory I have, perhaps some, if not all, will slowly return. Since I prize my memories — they are all I have and without them I have had no life, — I want them back, as many as possible bad as well as good.

Now let me continue on to the account of  Middlesex hospital in late April, 2010 and the first time they put me in 4-point restraints.

During the MD visit the morning before, Dr N wrote: “Patient later ..(?) ..to me that she didn’t trust anyone, that no one wants to help her and she is being punished by staff. I repeatedly said that she is not being punished and she is projecting….Patient escalating tension with staff. Rigid. Wants to die. Wants to sign 3-day paper to leave.” (It is not clear what he means by “later” — did he write this after the episode of restraints, when I did in fact tell him that they punished me? It seems likely. IN which case he did not listen to anything I said…)

RN note 1:30 PM: “Alteration in thought: Patient continues on constant observation. Continues negative, irritable, testing limits. Refused initially to shower, then changed mind and agreed to, then wanted to walk out of shower into dayroom naked. Agreed to dress after informed security called to unit…”

About these notes: one, what was I projecting in thinking they wanted to punish me? What? And it is typical that Dr N blamed me for “escalating tension” with staff. I wonder if he ever saw how they worked, saw in action the mechanism by which they’d cause an  escalation. 2) Most likely, in this case, I was threatened that if I did not shower I would not get off 1:1, so I “changed my mind.” And it seems to me that if someone “wanted” to get out of shower and walk into dayroom naked, it is a matter that the nurses could handle and ought to. I weighed all of maybe 98 pounds then. And if they had closed the door and made me dress, they could have. Why call security unless they wanted to threaten me, terrify me? That was neither compassionate nor caring. Methinks it was, aha, punishment.)

Moving right along…

All the details  that follow are “accurate” insofar as they are derived from official documents or my journal. Accurate in that sense. But remember that in the records, NO context is ever given, the behavior of the staff is rarely described, or only in the briefest and most self-serving ways. NO context is even given to MY behavior.

The nurse who wrote up the night’s notes says that I was angry the entire evening and demanded continuously that she call the on-call doc to discontinue my 1:1 status.  For some reason she writes that I was “unable to follow directions” when she tried to assess me for, I presume, safety, perhaps so I can get off 1:1. I don’t know what she is talking about here, but it is typical that the nurses cared only about a patient’s taking orders and following directions.

Anyhow, at around 7:30, she wrote that I “walked into the dayroom” and according to the RN notes, without any provocation (which is highly doubtful) began shoving and turning over chairs and then picked up the patient trash can and put it over my head. Although at that point the staff told me to “walk with them to the “time out room” I refused and “went to bed instead.” (That was written in the chart: I WENT TO BED INSTEAD.) Now, you would think that this would be fine, after all, would not they want me to go to bed and calm down? But no, I had not “followed directions” and so of course “security was called and patient required security to carry her to time-out room as she refused to move or walk.” Remember that this “time-out room” is exactly the same thing as the “seclusion room” — it is the same room, with the same “withouts” — without heat, without windows, without anyone to talk to, without blankets, without a toilet, without anything to make one comfortable…just a thin mat on the linoleum floor, unless they have taken it out. So they barged into my room where I had gone to calm myself down, and picked me up bodily and carried me to the seclusion room. That means by definition that they physically restrained me and physically, forcibly escorted me to the seclusion room where they prevented me from leaving, all of which are NOT permitted except in the case of “severe and imminent danger to self or others”…(so an event note should have been written up and a physician’s orders should have been gotten). There I took their Ativan and was told that I had to stay in the room for 30 minutes.  Why not in my own room for 30 minutes?  Because time spent in the time-out room is a punishment. Parents make children stay in a time-out room (usually their bedrooms!) when they don’t obey. Why? Because that’s their punishment. But staff doesn’t punish. No, they don’t punish…

Now this is how I remembered it the next morning in my journal: “I had been told to go to the time-out room, which I did voluntarily…” (apparently I did not remember that I had been physically carried there, but there is some confusion in the records too, because I went and then left and then was carried back…). “But it was cold and they wouldn’t give me a blanket so I didn’t stay long…This only led to more goons pushing me back into that cold and sterile room, this time strong-arming me and forcing me to a seated position on the mattress before quickly leaving but not locking the door.”

The nurse wrote it this way: “Patient refused to stay in time-out room, attempted to shove staff, kicked at staff to get out of room. Patient was instructed several times to sit on mattress and stop pushing at and kicking staff. Patient refused. Seclusion door locked at 7:55pm…”.

At this point both records agree that I stripped off all my clothing. But the official records state only that fact, and that I “was changed into hospital garb” but in my journal I write something entirely different and rather revealing: Left alone in that cold and sterile room, I decide “they’d have to give me a blanket if I was [naked] so I quickly undressed and just hid under the mattress for warmth. This caused a stir for some reason and I was forced to put on hospital pj’s and lie down on the mattress. This would not do, not without a blanket which they continued to refuse me so once again I got up and tried to push through the woman barring the unlocked door. She called for reinforcements and they came en masse. (Note: I spelled this “unmasse” — a dyslexic spelling of the first order. This is a symptom of my acute neuro-Lyme disease, since I was always a first-rate speller and would never have had difficulty with “en masse” had I not been in the middle of a flare up… as they knew full well).

“At this point” my journal continues, “they again subdued me and told/asked me why I was fighting. I said [it was] because i needed someone to talk to. That was all I wanted, just someone to talk to. The security guard seemed taken aback. All these personnel hours wasted when all I wanted was one half hour of one person’s time? It seemed to strike him as ludicrous as it did me….

“Why don’t you just ask to use this room when you feel anxious or upset?” he then asked me.

“I do, I have!” I replied

“Well?

“They always say it has to be reserved for an emergency.

He seemed completely flummoxed by that reasoning but there was no arguing with Policy so he fell quiet. Finally they decided to leave, telling me to be quiet and lie down.

I did. I did. But I was cold and I begged for a blanket.

“Sorry, it is too dangerous. You will have to sleep without one.”

That was it, I’d had enough! I dashed at them head first and they parted, only to grab my arms and try to stop me. Someone twisted my right arm and held it behind my back, but I knew how to get him to stop it, so I tried to bite him and he briefly loosened his grip. I twisted my own arm back to me and my left pinky, held, closed tightly onto something, hooked so tightly it wouldn’t budge. My legs, the right one, grabbed the thin leg of a woman behind me, making her lean back off-balance and lose her grip on me. Then I switched to holding both my legs in a death grip around the legs in front of me. It didn’t matter one iota that [I had taken off my clothes again to get a blanket and] was naked…Anyhow, they eventually overpowered me and got me onto the hard floor, my cheek on the dirty linoleum and breathing dust. At first I struggled but then I realized that the less I did so, the less they applied pressure (there must have been six people or more holding me face down on the floor,  one of them practically sitting on me…).

Finally I stopped resisting and they let me sit up, finally giving me a blanket or sheet to cover myself with. The room cleared as everyone left except for one nurse, who was on one to one with me. She apparently was now allowed to talk with me and we conversed calmly. The door to the seclusion room was also now open.

However, there was some soft talking outside the door and I heard someone walking down the hall and opening a cabinet. I had a bad feeling about it and asked the 1:1 nurse what was going on. “Don’t worry. They are just getting you some meds or making up a bed for you.”  This gave me a very bad feeling, and I suddenly understood what was going on, “Uh uh, they can’t put me in restraints, I am calm and it is illegal to restrain someone who is calm. You know that.” I said that again loudly, loud enough so whoever was down the hall could hear me.  I began to tremble, but forced myself to remain as composed as I could. Another staff member then came into the room and asked me to come down the hall. Did I need an escort or could I do so myself. “Oh I can walk by myself. But you can’t put me in restraints, I am calm and it is illegal.” Nevertheless, I followed her to the empty room — I felt like “dead man walking” when I saw indeed that they had fastened restraints on the bed. The room was filled with staff members and security guards. I told them over and over that I was calm and willing to take PRN meds. I said I knew they were punishing me and that they knew it too. No one said anything except to reiterate that they would assist me if I did not lie down on the bed myself. I was so terrified that they would assault me and hurt me, terrified of the fear itself, that I simply got it over with, lay down on the bed, naked, and let them do what they wanted to do, gritting my teeth when they removed the blanket that was covering me. Well, here is what I did not remember, the account after that from my journal:

“Well, you know that despite my complete lack of resistance, they shackled me 4 points (badly as their restraints did not actually fit the bed — restraints are supposed to keep the arms at your sides not below the level of the bed, and your legs are not supposed to be spread-eagled! I protested this fact but not so loud as to disturb others [when they released me] my back hurt so badly I could barely walk and once more my scapula muscles felt as if they had been separated.”

“I plan to sue you for doing this to me.” I said calmly to all as I left the room. Nobody reacted…I woke in severe pain, the muscles in my chest felt torn from those that connect it to the shoulder, the pain went clear through to the scapula.”

Nursing notes were rather different, and I think were written after the fact, and hastily, perhaps not exactly ‘fact-checked” for accuracy after all. [Did a family practice doctor really see me? I do not believe so…why else would I not tell anyone about the pain, which she reports as non-existent.) But here is what she writes about the “scuffle” in the seclusion room:

“Patient was changed into hospital garb which she also stripped off. she demanded a blanket which was not given due to concerns about her tying it around her neck. [Note that I was ALWAYS under one to one surveillance!] She was encouraged to put the johnny back on and she refused. After staff left the seclusion room, patient placed mattress over herself where no staff including her 1:1 could visualize her. When staff entered room and removed mattress, patient again darted toward staff and attempted to flee. Pushed at staff, then kicked at staff, and attempted to trip staff  wrapping her legs around RN’s leg. During the scuffle patient ripped bandage off her leg and yelled, “I have AIDS. I didn’t tell anyone that before!” She refused to remain in locked seclusion without attempting to harm others. Patient covered with sheet and walked to empty patient room where 4 point restraints were applied. Patient continued agitated initially then was quiet lying still.” [Patient can come out of restraints when able to refrain from aggressive behavior towards staff and property and can follow directions.]

Now you get the picture. I was put into restraints as punishment, but as an excuse for it, they made up a reason, which is is how I can get out of them: stop being aggressive towards, 1) staff ( remember who dragged me into seclusion room? I had gone to my room and they dragged me out of it just to teach me a lesson in the punishment room! 2) property – I was a danger to property… I do not think somehow that danger to property is one of the reasons a person can be put in restraints in this state or this country. And the danger was that I had put a wastebasket over my head! 3)  following directions, well I won’t even go there. Just look at those “justifications” for keeping me in restraints and you will see just why I know they “had it in for me” that particular episode, but in fact were trying to get me most of the time I was there.

Be that as it may, I have contacted the Commissioner of Mental Health, and hope to contact the Office of Protection and Advocacy, which oversees the private hospitals in the state as opposed to the state hospitals, though I do not see why the commissioner is not involved in any hospital that takes state money, as all the private ones do…And seeing as I am a Medicaid patient when hospitalized, I would be a state patient were it not for the private hospitals being forced to take such patients in this economy, whereas years ago they could pick and choose, and did.

Finally, the MD’s “event note” observes upon exam in the restraint room that  the patient is “generally agitated, very verbal, lying in bed with the help of staff and security to calm her down…” I beg your pardon? Calm her down?! I was being restrained, one, and two, I was being tied to the bed with my arms over the edges of the bed, below the level of the mattress, and my legs were spread-eagled –I was naked, remember? and all of them knew it.

So that is all I have to write tonight. I am appalled. What sort of people could do that to anyone? Who were they once, and how did they become so jaded and cruel? Surely, as nurses, they must have once been idealistic and good-hearted and compassionate. Most people who go into nursing are and I doubt that many go into it for the money or for any other reason than that they care about people. I simply have never met any young nurse who was not idealistic and caring, but I suppose there might be one or two. So what happened to this group? Could it be their own “society” is not supportive, is backbiting and so lacking in cohesiveness that they take out their own frustrations and lack of positive feedback on those patients who least please them?

I dunno, I have been told that this mechanism is sometimes at work on units where staff behavior is out of control in such a way. But what made them in fact so much into control and coercion at all? Why were they not themselves empowered by compassion and kindness, which would have fed them better as it fed the patients better as well? How did it come about that they learned the wrong lessons? I don’t know, and probably will never know. But I did catch a sense of these strengths in one or two of the nurses, just buried in fatigue or long ago burned out…

Too many were too personally invested in the patients liking them or in behaving for them in such a way that made their jobs easy! That was stupid and nonsensical. Why should the patients have to be or do anything for the nurses? The patients cannot control their illnesses and staff forgot that in their own need to be in control and to have their own need met by their patients. I think  that is what it comes down to: at Middlesex, the staff’s needs were not being met by each other, or by the supervisors and colleagues, so they looked outward, and who did they expect to meet their needs but their patients, who could not, and could never do so. So they tried to make them, force them to. Or at least to toe the line and make each day quiet and easy to get through. What a farce. What a lousy place to be sick in, what a sick place to try to get well in…

That’s enough for tonight.

Acceptance, Forgiveness, Happiness, Mental Health, Recovery, Trauma, Uncategorized

Trauma and Acceptance

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Snowdrops accept the snow, grow through it, are first to see the spring

These past several weeks have been pure hell for me. In fact, despite some of my “up” posts, these past 18 months have been hell. I have found it nearly impossible to move beyond my experience and the trauma and degradation, the deliberateness with which they were visited upon me by people who should have not only known better but should have…

Wait, I have determined not to go there, not to revisit that dark place in my mind any longer, or not for now, after I can handle it better than I can at the moment. It serves no purpose, one, and two, it only feeds the fever of despair and revenge-seeking, an emotion that can eat you alive if you let it.

It was the notion, the actual feeling of wanting revenge and Dr Angela’s dismay when I said so this morning that brought me up hard against my own deficit of forgiveness, my own inability to accept that which I cannot change. I suddenly understood not only the horrendous feeling that parents must have when a child is murdered, how they must want to see the murderer killed, and how they must want the death penalty for the killer…I felt that much anger for my torturers. And at the very same time, I suddenly saw how useless it was, that nothing could be done, that in fact they would and had “gotten away with it” but that my only recourse was not revenge but to accept it and move on, because not to was to get mired in fury and bitterness and the morass of despair that was weighing on me and driving me nearly to madness every day. I had to stop, I had to stop and find a different way to deal with it, or I would die. Simple as that.

So I considered that family of the murdered child, and I understood that if that killer were executed to serve their revenge fantasies, would it actually bring closure and peace to them? Time after time, that has been promised, and time after time, people have not found peace in the killing of another human being because it never works. Violence to revenge violence cannot relieve the trauma of loss, or make anyone feel less awful. It would be far better for that family, and for me, too, to learn better ways to cope, to breathe through the despair I suppose, or even to work so that others do not go through what they or I have experienced, as long as doing would not reignite the trauma for us.

I am not sure I am ready to do that sort of thing just yet. I do not want to get angry on behalf of anyone else at the moment, for fear that I will only get angry, and anger by itself for its own sake will not help me. But already I speak out about these things, say what happened to me but in my speeches I try to end with words that segue into messages that bring hope to my audience. I could never speak about those traumas without something that would bring it full circle to recovery from trauma or I would leave them in despair and myself as well. As in a poem, you start with darkness but leave with at least the assumption that light is on or just below the horizon, headed in the right direction.

So there I was in Dr Angela’s office, and even though I was sobbing about this trauma that I could not surmount, that was eating me alive, the picture of that angry but grieving family appeared in my mind’s eye, and I realized that I had to find a way to help them, to heal them…and how would I do that? I would, I would, I would…First I would help them stop ruminating about the killing, since rumination is itself a way of making the injury or trauma worse, like continually picking at a scab. I would have them open up to the world and see what is around them, see what remains alive, what has not died. For me, I would look and see what in myself was not violated, what I can do in spite of what they did to me, understand that I still write and draw and paint, that in fact they did not take those things from me.

They hurt me, but they did not kill me. They only degraded my feelings, they only humiliated my feelings, they only frightened me. They made me feel as if they might hurt me when they attacked me and pushed me to the floor. I felt scared but they did not do anything that permanently injured my body or caused irremediable damage to my brain. I am still alive and in fact can still do what I used to do. I only feel hurt, feel traumatized. Feelings are feelings, and while they are not nothing, you can change your feelings. I might not be able to change an injury that led to an amputation or brain damage and I certainly could not if they had killed me.

I need to think about this differently in order to change how I feel. I need to think about what I can do, both constructively and creatively. What I can do about it and what I can do instead of thinking about it day and night. Well, tonight what I can do is prepare my speech for the Farmington Library tomorrow, and pick out the poems I am going to read. And tomorrow I will be cleaning my apartment and then meeting my ride and going to the library early. I won’t have time to brood or ruminate. I will bring my sketchpad and pencils, so I will have something to do while I wait.

One thing I won’t do is leave myself time to think, no, that will not be an option I am going to allow myself. If the Commissioner of Mental Health contacts me after reading the letter and documents I sent her, so be it, I will leave the issue in her hands. But otherwise, the case is closed, at least for now. I have a life to live, and I need to get on with it. If one of those people who deliberately hurt me, just one of them, went home that night with a bad conscience, ashamed of herself, ashamed of herself as a nurse, I am glad. But it may not have happened and in any event I will never know. But i will not brood over it, and I am not going to think about any of it tonight.

One day at a time, just take it one day at a time.

Amnesia, Art and artwork, Book, Collage, Memory, Natchaug Hospital, Psychiatric Unit, Seclusion and Restraints, Surrealism, Willimantic Connecticut

Artwork from Hospital

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If the window is open, what does the mirror outside see inside the room?

As may be obvious from the brown paper at the sides, this collage is very much unfinished, both as to content and as to medium. What I mean is, this is a kind of painting with paper, so I am so far dissatisfied with, say, the blue curtain with yellow lining, because it still looks rough and is not clearly a curtain blowing in the air coming through the open window. Ditto, the open window, which is not clearly even a window, except by virtue of my titling it such. But when I finish with it, I hope all these mysteries will be clearer, including the surreal placement of a hand mirror outside an upper story window! (I said it was surreal, didn’t I?) But what I cannot help is whether or not the viewer recognizes what it is that is on the bed. Some people simply do not know what restraints look like, and have variously interpreted them as guitars or snakes or what have you. To me, it is obvious. But I guess most people have not been in such a situation, and have no conception of what they might be looking at. Perhaps a more suggestive title would help?

Another important feature of the “painting” is the frosted glass window, with the mysterious something going on behind it, again left up to the interpretation of the viewer. If you understand that this is a restraints bed, and that the window is open…what could be going on outside the seclusion room? And why is the window open? Should the bed be empty? If you could see this very large collage – 5 feet by 5 feet — up close, you would see that the mirror overhangs a very detailed garden, with all the trappings of well designed backyard floribundance, so to speak. There is a little table and benches and other accoutrements, but also a path leading up to — a garden gate, which opens onto a field and freedom.

As I worked on this collage, I was in a state of acute anxiety — with tremors and shaking and palpitations I did not understand. And every night I would weep with bodily but not conscious memories of the recent brutalities I experienced at Manchester and Middlesex Hospitals. At Natchaug they understood how degrading and traumatizing such treatment had been, and indeed how re-traumatizing. Because indeed, I had already been traumatized many times before in the 80s and 90s and early to mid 2000’s by what I thought was SOP use of such measures. Instead, when those recent hospitals used them,  cruelly and inappropriately, at a time when I knew their use was frowned upon and had been severely curtailed, it not only re-awakened the original trauma, but in a very real sense put me in emotional touch with it, the pain, the terror, the horrendous humiliation for the very first time.

I am not by any means over it. As I work on my memoir sequel, BLACKLIGHT, I am also slowly going over my hospital records with Dr Angela, aka Dr C, and it is a gut-wrenching task that leaves me drained and tremulous. But if it succeeds in returning my memories to me, all of them, I shall consider it worthwhile.

Art and artwork, Book, colored pencils, Drawing, Recovery, Surrealism, Writing

Artwork and a Word about my Self-Portraits

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I wanted to write a bit about the artworks that I posted yesterday without any explanation. The first one was the only one I planned in any sense of the word, and even then I cannot say I really knew what I was going to do when I started it. My process in these drawings is to simply start with an image, say, in the first one, I started by drawing an eye, and then to see where my subconscious takes me. Once I have established enough  images  – just a few usually — that are coherently related to one another on the paper (or not) then I look to see what is in the “negative” spaces, which fill up with images too. You can see this most clearly in the middle  and third works.  I know how the pictures were made, since I drew them, but in looking at them objectively now, I can see that an observer might not see anything conspicuously “unintended.” And of course, what does “unintended” mean when it comes to the subconscious?

 

But in the picture I will post below, this “technique” if you will, predominates. (You either like it or you hate it) I hesitate to call it a technique because that sounds like something consciously adopted, where I feel it simply reflects an unconscious change, something that happened co-incidental with Joe’s final days and then took on a life of its own after the trauma of his death. But let me post the picture I am talking about, the one that I started on the very day they took him off the ventilator, and then I will continue.

 

Death comes in brilliant colors -- look more closely to see what is there.

All I can say about this is that a person here is cutting the cord that is connected to a heart and a pot and is not plugged in…and the person with the scissors is a little excited by this in a way that implies pleasure…I am saying no more, except to reiterate that I drew it, or started it the day Joe died or more accurately was killed.

 

After that, I started doing more and more “honest” pictures, pictures where I did not try to please anyone, but was simply drawing and painting what I felt like. The next one after this one was the Beauty SLeeping with Bugs one, which was in the post yesterday. And then the self-portrait series, which began with the earlier Dead Meat one, Goon Squad: First Responders. In that notebook, I endeavor to draw only “self-portraits” though not likenesses. I am not sure what to call them, conceptual self-portraits perhaps? The second one is a very loosely drawn portrait of me as an animal, done in a different sketchy style (I haven’t photographed it or I would post it.) The third is Pam as Ornament, which I will post below, and once again I had nothing in mind when I started it, except the concept. The Santas came out of nowhere, esp the one that is only a head on a tray!

 

I guess I have nothing more to add for now.

 

I have been working on my memoir, which I have tentatively titled “BlackLight: a Memoir of Madness and One Woman’s Struggle for Recovery” — so far after only about 5 days work I have 27 pages done (more, really, just not organized and polished). Would be happy to hear any comments or suggestions for a better title (which I believe is a request I have made previously).

 

Thanks all.

Art and artwork, Bugs, colored pencils, Uncategorized

New Art Works

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"What's Bugging Me?"

Dreamscape — not the best photo — colored pencil drawing

Beauty Sleeping with Bugs
Abilify, Art and artwork, Geodon, Natchaug Hospital, Psychiatric Unit, Seclusion and Restraints, Willimantic Connecticut

Natchaug Hospital Stay #2 and Update with Picture

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Just wanted to update you on where I have been and how I am: I  spent 6 weeks at Natchaug Hospital in Willimantic, Connecticut this past July and August and though I was discharged as much improved, I  am still having a difficult time, both readjusting and well, simply having a hard time of it. Although in the hospital they did a little adjusting of meds, increasing both the Geodon and the Zoloft, I am not convinced that either one made much of a difference nor that it did less harm and more good on balance. In any event, Dr C and I (at my request) soon eliminated the 25mg increase in Zoloft, and are now dropping the 80mg increase in Geodon. She is concerned that the 240mg is making me very irritable and more upset and frantic rather than providing enough relief  to make it worthwhile. Yes, the voices are much improved, but that could be the passage of time and perhaps due to a general decrease in paranoia, who knows? All I can say is that I cannot take this general state of overwrought irascibility, a tendency to snap at anyone who “looks at me crosseyed,” as my mother used to say.

Natchaug Hospital remains a very good place, the best I know, and just as I remembered, not least because they have a philosophy of kindness and compassion towards patients. In fact, they are excellent because they have a philosophy and are not simply flying by the seat of their pants, hiring whoever comes along needing a job, burned out or not. Not only is their philosophy based on compassion and not on controlling the patient, but they see no point in rules for the sake of rules. It is clear that if there is something in the unit set-up that doesn’t serve a particular patient, the Natchaug staff will bend it as far as they can and try to accommodate each patient’s particular needs. As I was frequently told, why make someone miserable when you can make them happy? It is difficult to be happy in a psychiatric unit, and many patients are miserable because of their illnesses, but not once did I ever see a staff member add to that misery willfully and certainly not to mine. (I frankly could not say this of two Connecticut area hospitals, one in Manchester and the other in Middletown.)

One thing that makes many patients happy at Natchaug, by the way, is that caffeinated coffee is provided at breakfast, a rare blessing in in-patient psychiatric settings.  And since everything is served cafeteria style, so you can have all you want.

They used to provide hot decaf coffee on the unit itself, which was a treat. Because one very ill patient tossed a cup of coffee at a staff member, however, and she was injured, and because for some reason they decided that that patient could not be restricted individually from having hot coffee, now no one is permitted hot drinks on the unit at all. Yet, I suspect that even he would have not thought it unfair to be kept from the coffee pot! I know that in other hospitals I have had restrictions placed on me that others have not, and no one thought it wrong or unfair to me…Anyhow, I dunno what to think, but it was their policy, a misguided one, perhaps, but who am I to say? I know everyone went nuts for a while about having to drink lukewarm “swill.” Finally, though, the patients simply gave up on the “coffee” machine and did without. Anyhow, I have to admit that when I first saw the hot coffee machine, I couldn’t believe it, not because I was thrilled — though I was — but because I saw an “accident”or worse already in the making…

Note: one of the few hard and fast rules  at Natchaug is one they cannot change because they will lose accreditation: no smoking. Smoking is simply not allowed, not even on hospital grounds. While certain patients have tantrums about this and might cause an uproar from time to time in order to try to force the staff to allow them to use the courtyard to smoke “just one cigarette, just this once, please, I am absolutely desperate!” it is simply not possible. But people are allowed the patch and gum and every effort is made to help smokers quit. Even though some staff acknowledge that the policy is unfortunate, even unfair, nothing can be done about it.

I was not, however, comfortable for most of my stay there, and was paranoid a great deal of the time. Of course, I did not understand that the staff was aware of this, so when I began to come out of my delusions of persecution, it surprised me mightily to discover that they knew that paranoia was the reason for my hostility all along. Nevertheless, up to the very day I was discharged, I was hearing people talk about me up and down the hall and at the nurses’ station.

Well, that is all I am going to write for today because I am, as of  a week ago, in the middle of writing my new memoir, and as the days progress I plan to put parts of it up here, for comments and for suggestions. Feel free to do both!

I will finish here with one of my latest drawings, which represents how I felt when I was restrained at Middlesex Hospital, both the time I described in a recent blog post, and the other(s) (for which I have amnesia) when Josephine told me I was more or less “out of control”…to which I can only respond: Violence begets violence, and perhaps if they had not perpetrated on me what they did, things might not have gotten out of hand, But then, that hospital is one that is guided by the Control for Control’s Sake philosophy and the nurses were bitter and angry people…Needlesstosay, they hated me if only because I refused to roll over and play dead, if not die.

Forthwith the picture.

Pam as Dead Meat: Let's Eat!
Forgiveness, Happiness, Mental Health, Poetry

Happiness is….

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You know what they say, that happiness is not to be found in how much money you have or in the things you own or can buy, nor even in how many friends surround you or how many people love you. The poem about Richard Cory, upon which Simon and Garfunkel (remember them?) based a once well-known song, just about says it all:

RICHARD CORY

By Edwin Arlington Robinson

Whenever Richard Cory went down town,
We people on the pavement looked at him:
He was a gentleman from sole to crown,
Clean-favoured and imperially slim.

And he was always quietly arrayed,
And he was always human when he talked;
But still he fluttered pulses when he said,
“Good Morning!” and he glittered when he walked.

And he was rich, yes, richer than a king,
And admirably schooled in every grace:
In fine — we thought that he was everything
To make us wish that we were in his place.

So on we worked and waited for the light,
And went without the meat and cursed the bread,
And Richard Cory, one calm summer night,
Went home and put a bullet in his head.

We all know it’s true, both the cautionary tale of Richard Cory, and that money doesn’t buy happiness. At least we know it with the left sides of our brains. Alas, this is still the side that does the intellectual calculations of how many friends or about the nice car we’ll need to have before we will finally be happy. And if we didn’t know it before, all we have to do is listen to the news because nearly every week it seems there is yet another story about a celebrity who seemed to have it all – money, beauty, acclaim, adoring fans – who ended up destroying himself on drugs and alcohol or who committed suicide (“no one had any idea she was so depressed…”) at the height of her career.

But if money and things and friends who love you don’t offer a path to happiness, what does? Is there a map, a guide, an instruction manual, a recipe? One look at the number of books on the market purporting to teach you how to be happy tells me there are lots of people making lots of money trying to tell you they have the secret. And given the number of books they sell, an awful lot of people out there are desperate enough to spring for them. If you have bought any of these books and found their secrets to be The Secret, or even to be one effective secret that worked for you, I would love to hear about it. Truly, I am not being sarcastic. I am a writer, and I believe that writers are for the most part sincere. Not all of them, mind you, but most of them. And so when a writer writes a book promising happiness, I believe that he or she probably believes it. I just don’t happen to think most of  it ends up being effective.

But maybe it’s me, I dunno.

Let me explain. I have had many, many struggles with self-acceptance and self-regard over my lifetime (I am 58 years old at this writing, so you can see that I am far from young) and I assure you that I am far from winning the battle. My self-esteem is very low. So low in fact that I hesitate to say more… But at any rate, when I say my self, I mean my inner self, my soul, my – well, whatever it is that one might want to distinguish from the “self-that-produces,” the working self. What I mean is, I know that I write well, and I am learning to become a better artist as the days go on. But those skills have not fundamentally affected my self-esteem, only my level of confidence. And there’s a big difference between the two. I have a lot more confidence in my abilities than I did years ago, partly due to greater skill and long experience – though only in my writing — and partly due to caring less what others think, because there is less at stake at my age. My self-esteem on the other hand remains utterly unconnected to this, and largely unaffected by it. Whether or not I love or utterly despise myself has little or no bearing at all on whether or not I am able to write or paint or draw well. All it might do is affect what I write well or paint or draw about.

And I can be proud of my poem or essay or my drawing, proud of what I produced, without that having the least effect on how much I fundamentally love or hate myself.

But, and here is the thing: I do not believe that hating or loving yourself matters in the search for happiness. Or at any rate, it is not the sine qua non, the primary requirement before you can be happy. In fact, I think in the happiness department, self-regard is over-rated. It is not that I want other people to feel badly about themselves so much as that oddly enough     I think it has little to do with whether or not one can find happiness.

Maybe I should amend the word happiness to contentment. I do not like the first word all that much, as it smacks of little yellow smilie faces and balloons and other inanities. Happiness is decidedly not inane, but our emphasis on the importance of it has made it seem so. Contentment as a word and concept has been all but forgotten in the rush towards the seemingly bigger motherlode of happiness.

So let’s switch gears and say that we are on the search for contentment, which also is not found in money or friends or in being loved by others. So where do I think you can find contentment? (Clearly I write this with my own agenda in mind…why else write it at all?)

I think contentment – indeed, even happiness – does come from within, and it starts with forgiveness.

Forgiveness? Why that of all things, you ask? It seems like so many other emotions and “emotional acts” should be more important – like loving yourself and others and being compassionate etc. But I assure you that without forgiveness, you can have and be and do none of those.

Kindness and generosity were always supreme values to me, even when I was a child. It hurt me inside to see anyone going without something that I had it in my power to give them. But it was many years before I understood that forgiveness was also a crucial value, that it not only partakes of both compassion and generosity but presupposes both. Not only is forgiveness an act of kindness but it is freely given and therefore an act of extreme generosity. You cannot force forgiveness any more than you can force a “sincere apology” despite what our parents might have thought when they made us “say you are sorry and you better sound like you mean it.”

Okay, so forgiveness is critical for contentment, maybe, but forgive what or whom? And why? First of all, everyone is scarred by their pasts, everyone has baggage from childhood. In fact, while some people had more than less happy childhoods, everyone has bad memories that they cannot shake, that have stayed with them and in effect traumatized them.  Second, scars are simply an unavoidable fact of life. You can’t get through life without them, and childhood I’m afraid is a rough and tumble place where you pick up the bulk of them. Three, who “caused” our childhoods, for most of us? Answer: our parents, or whoever took the place of our parents. That is why our first job is to forgive them. I’m serious, and while we are at it, we have to forgive childhood itself, all of it. It doesn’t matter what happened, or how terrible, it really doesn’t. If you do not forgive it, if you do not forgive everything that happened to you, you cannot let your childhood go and get on with the present, which is where happiness, where contentment lies. Contentment is not in the past, that much we know, and no one knows a single thing about the future. But if you cannot forgive the past, and especially the childhood where you got all those scars you carry around now, you will never move beyond it to experience an undefiled present.

Look, I believe that forgiveness comes from inside the brain, but heals a place in the brain we like to call the heart. And I believe that forgiveness is more healing for the person who forgives than the forgiven. So I wish you could forgive all those people who harmed you too. All the people, relatives, friends, lovers, rapists, molesters, thiefs, betrayers and more…because I truly believe it would be good for you and for your heart. But I think it is essential at a minimum if you want to be happy to forgive your childhood, the entire experience of it, not the individuals or the single events, just the fact that you were a child and had to go through it. Once you can forgive it, you see, you can let it go just as it has and be gone.

After you have forgiven your parents or parent-stand-ins, and your childhood, you are well on your way. Many people would say that this is a step towards self-acceptance here, and that is how you reach happiness, but whether it is or not, is not important to me. In some ways, self-acceptance is not what I am after so much as acceptance of the world, both of the past and of the present. And when I say “acceptance” I mean such utter acceptance of it that you can forgive it. Because only when you can forgive, so I believe, can you really accept the world. And when you can accept and forgive the world both past and present, then you can be happy.

( I realize that I have put my poem below on this blog before, but clearly it belongs here, though it is for a second time. And dang, I do not understand why this program will not allow me to get it single spaced!)

TO FORGIVE IS…

to begin

and there is so much to forgive:

for one, your parents, one and two,

out of whose dim haphazard coupling

you sprang forth roaring, indignantly alive.

For this, whatever else followed,

innocent and guilty, forgive them.

If it is day, forgive the sun

its white radiance blinding the eye;

forgive also the moon for dragging the tides,

for her secrets, her half heart of darkness;

whatever the season, forgive it its various

assaults — floods, gales, storms

of ice — and forgive its changing;

for its vanishing act, stealing what you love

and what you hate, indifferent,

forgive time; and likewise forgive

its fickle consort, memory, which fades

the photographs of all you can’t remember;

forgive forgetting, which is chaste

and kinder than you know;

forgive your age and the age you were

when happiness was afire in your blood

and joy sang hymns in the trees;

forgive, too, those trees, which have died;

and forgive death for taking them,

inexorable as God; then forgive God

His terrible grandeur, His unspeakable

Name; forgive, too, the poor devil

for a celestial fall no worse than your own.

When you have forgiven whatever is of earth,

of sky, of water, whatever is named,

whatever remains nameless,

forgive, finally, your own sorry self,

clothed in temporary flesh,

the breath and blood of you

already dying.

Dying, forgiven, now you begin.

Uncategorized

Recovery – What is it?

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I recently wrote a post on my About Schizophrenia blog that addresses this question.

 

“Recovery, recovery, recovery, what a whale of a word. And by whale I mean a big whale, a white whale, a veritable Moby Dick of an obsession, only it is one that it seems no one is able to define in any quantifiable way. Not at least so that makes sense to me. “Recovery is a process.” You have heard that one, no doubt. I have used it in talks any number of times myself. Well and good, but so is digestion and so is having a heart attack, and in the first case you let it go on about its business in the background, whereas in the second, you definitely want to interrupt the process as soon as possible. So, okay, recovery is a process, as I blithely voice to my audiences, but what do I in fact mean by that?…”

 

You can read the entire post here:

http://aboutschizophrenia.blogspot.com/2011/05/recovery-recovery-recovery.html

ALS, Love, Uncategorized

A Death of a Friend from ALS

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Joe C

My longtime dear friend, Joe Cornelio, died at the end of April, after living with, and I mean, living with, ALS (Lou Gehrig’s disease) for five years. Although he spent the last four of those years in a chronic care hospital on a ventilator and virtually helpless, he never once gave up on life or stopped loving it. He was a miracle of a man and even at the end I believe he would have continued to fight to live, even if all he could do was move one eyeball to say yes or no. It is entirely possible that he would have wanted to live even without that ability, but we will never know.

It is difficult for me to write about the day he died, or about how it came to pass that he was removed from his ventilator, but if you will bear with me, it may do some good (for me at any rate) to put the pieces together and get it onto paper.

I believe that Joe was misdiagnosed for many many years with schizophrenia, when in fact he had had Asperger’s from childhood. Now, that’s a long story in itself and though I could make a case for it, I cannot prove it. But I am not the only one who knew him well to notice that he never once exhibited signs of psychosis or even real delusions or true paranoia. Furthermore, from what I gather, the only reason the diagnosis came about or  “took” was because he was put on Trilafon by a well-known psychiatric incompetent who was later “defrocked” and when Joe looked the drug up in the PDR and read what it was used for, he concluded that that meant he must have schizophrenia. From then on, so his story was, he told subsequent doctors this diagnosis, and apparently they simply took it on faith. In fact, for all the years thereafter until his terminal illness of ALS, the one doctor he saw not only never questioned this, but also never even reconsidered his absurd concomitant Dx as bipolar, even though Joe clearly had one of the most placid temperament possible and certainly wasn’t the slightest bit moody. No one so far as I know ever even considered that there might be something else going on. Even when I once went with him to see his non-medical therapist, did she really seem even to want to think about the possibility, as if it might be too much trouble…Perhaps, though I cannot recall, it was too late, if in fact this was after Joe’s ALS diagnosis.

But as I said, that is a long story, and not being a doctor, I suppose I can’t make the diagnosis, except that as his closest friend, I do and I feel that a great injustice was done. Not only was he saddled with a serious psychiatric diagnosis, and a stigmatizing one at that, but that particular neuroleptic medication rendered him much too tired to work as an engineer. All his adult life that was what he really wanted to do. Work. But the drug sapped his stamina…Worst of all, although eventually on Zyprexa which helped what might have been poor social skills due to Asperger’s, after he had been on it for years it caused the diabetes that ultimately cost him his life.

Speaking of engineering, all the years I knew him, Joe thought, breathed and ate engineering in one fashion or another. It is not that he was an automaton or a bore so much as that he applied engineering thinking to every problem that came up in life, even to our quarrels. Or better to put it, to my various emotional upsets. Whenever I got in some sort of “state” his approach was always to remain calm and to break things down into little pieces and to try figure out, or to help me figure out what was wrong and (just like a man) how to fix things. The beauty of this approach was that it so often worked! He never fed the fires, and he never took things personally, which was pure magic. Sure, he could be irritating for the same reasons, since when he was the source of my irritation, he rarely responded and he never listened to anything I had to say, unless someone in authority said the same thing, and then they got the credit. This hurt my feeligns time and time again, for I felt that he never took me seriously, and discounted everything I said as being worthless for my lack of degreed expertise. However, I came to accept that and by the end it was just a joke between us. I would find him a real expert to tell him what I already knew, just so he would believe it.

Anyhow, for all his faults, and even the dead are not blameless, he managed his last illness with amazing gracefulness and not a word of complaint. The day before he was hospitalized with the pneumonia that put him permanently on a ventilator, he saw a new doctor, who actually gave him a clean bill of health, so to speak, and said his lungs were clear! Joe came away from that hour and a half appointment not saying a word, even though he could not breathe well, and had been to see him because of it. The doctor must be right, no? After all, he was a doctor. (So much for medical degrees and expertise…) It was only later that evening when he went into a breathing crisis that Karen drove him to the ER where they found him suffering from aspiration pnsumonia, a common result of ALS when the throat muscles are too weak to prevent saliva and food and liquid from entering the lungs. He was immediately taken to the ICU and spent  3 months there, first with the aspiration pneumonia that almost killed him, and then, just as he was being weaned off the ventilator, with 2 more cases of hospital acquired bacterial pneumonia, which made it impossible.

After that, it was four years in the Hospital for Special Care in New Britain, where the care was indeed special. They were wonderful to him there, and I believe he would never have survived as long as he did without them. But in the end, Zyprexa had caused diabetes, which he did not even know he had until the ICU tested his blood sugar, and it was uncontrollable even during the years at the HFSC. During the final year the tissue around his  tracheostomy started breaking down and would not heal, which is not unusual in diabetic skin wounds. Eventually the hole that held the tube grew so large that the air began leaking so much that he was not getting enough oxygen without the pressure beign increased dangerously, and during his last week, his lungs began to bleed, probably as a result. He went in and out of consciousness, according to whether or not he had had a transfusion.

Amazingly enough, though, one of the last times I saw him completely alert, conscious and able to communicate, he told me by moving his eyes and indicating letters on a letter board ( he had lost the ability to control his computer, which for years had spoken what he spelled with the gaze of his eyes) that he was “still chugging along.” When I asked him if his life was still worth it, and if he was still happy with it, he answered without hesitating, YES.

He knew he was dying, but he begged me to make sure no one killed him,  that no one just pulled the plug on him or let him die through neglect. I promised him that, and asked his cousin, who was in charge of funds to hire an aide, just for someone to sit with him during hours when the hospital might be short staffed. This man, Ben, turned out to be an angel in disguise, apparently, though I met him only on the final day.

Why the final day even came as it did I will never know, I suppose. I still do not understand the rush, when the very day before from all reports Joe had been quite conscious alert and seemingly content. All I know is that I got a call the next morning that he was going to be taken off the ventilator that afternoon. I asked first if he was unconscious, and was told, um, yes…but it didn’t sound convincing. Then I asked if this was his wish. The response was that it had been pre-arranged back when he had first become ill.

I wanted to say more, but I was up against two strong men, his cousin and the doctor. And under the pressure of the moment, I forgot that I had any rights in the matter, if I did still. I forgot that at least in Joe’s living will I had been designated at one of the medical representatives, and that the cousin was supposed to consult with me before making any end of life decisions for Joe, and then only if Joe were in a persistent vegetative state or completely and permanently unable to communicate. But so far as I could tell, neither of those conditions were true, had not been true up until now and could not be shown to be true within the space of one day. Yet the announcement was so sudden and so abrupt and definite, that I had no chance to say, Wait a minute, what is the rush?! I simply stammered that I would be there asap. I now wish to god I had stood up for Joe. I know he was conscious when I got there, I know that he could have communicated with me and probably have indicated whether or not he wanted this done. But I didn’t dare ask him, or even bring it up, lest they kill him anyway and my letting him know in advance only increase his terror…Would they have done it expressly against his will? I had no idea! I was terrified that indeed they would have. I didn’t know what to do… I had brought in music for Joe to listen to, because I thought that he was unconscious, but he didn’t seem so to me and though he couldn’t respond, he did seem to see me. And even his cousin talked to him with the same apparent understanding.

But it was all grotesque, because I knew what we all did, and were dancing around not saying, which was that Joe was going to die within the next ten minutes. NO one even said a word. (I admit that I did, privately, indicate to Joe when all were out of the room, that I would be there all of the afternoon, for as long as he needed me, but I didn’t tell him exactly why. Well yes, I did say that the plans he had agreed to at the start of his illness– I cannot recall what I in fact said, but I let him know as gently as I could what was going on. Was I cruel, unintentionally? Well, get this: The doctor who was going to pull the plug came in and in front of Joe, as if he could not hear him, told us all what was going to happen, how he would make Joe unconscious with morphine and then turn off the ventilator, and related  each stage that Joe would go through as he died…He told us this blow by blow right in front of Joe, right as I am sitting there at Joe’s side. But when I asked him to speak directly to Joe, he said, “No, not in Joe’s frame of mind, that wouldn’t be helpful.”

HUH????? What was that supposed to mean?

I will probably be asking that for a long time. Why did he not act like the compassionate physician he was supposed to be? Where was any shred of compassion? For god’s sake, if he was “helping Joe not suffer” where the hell was his empathy for his mental suffering? Did he think that just killing him was not going to cause suffering? I mean, what the hell?

Well, I cannot go further with the details, except to say that I left after Joe was essentially no longer Joe, once he was in a coma. All through his illness, Joe had never seemed any different to me, had never looked or become anyone any different from my old friend. But  at the moment I looked up from his hand as I stroked it, I realized that he was gone (though technically alive) and that Joe was not there. I bolted then and there, realizing that I wanted not to see anything more.

Joe is gone now, and I had a really hard time for several weeks. The funeral was held very quickly an hour away in his home town, so few of his friends who had stuck by him could go, if any. However, a few weeks later, we had a memorial service for him in the hospital, a service I personally found somewhat hurtful, but that is another long story. In any event, I wrote two poems for him, which I read for it. Only one can I print here, as I hope to publish the other before I put it in my third book.

DESIDERATA

for Joe Cornelio

When you die,

let there be lightness in your limbs, so they can rise

to lift you from your bed.

May there be clarity in your speech

so your tongue can once more speak the names

of those you love. Let those syllables wash

your tired face. Take up your hands, reach for mine.

You can wipe your eyes now.

Let your smile widen and shine as it can.

When the perigee moon rises above the water

let it pour gold through the trees,

let the fish leap in the blue ripples of evening

and the frogs that are left sleep in the cool mud.

Wherever you are, may you remember

both the friends who stayed and the friends

who scared, for all of us loved you,

blankets to your chin, and let that warm you.

And should the light fail at the end of the tunnel,

remember: only when it’s dark

can you see the stars.

Medication, Schizophrenia

Latuda: brief personal review

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Due to a personal tragedy, I have been off line for a long time. Please go to my other blog to read this review, just written tonight.  I will be back here soon.

http://aboutschizophrenia.blogspot.com/search/label/Latuda

Thanks all,

Pam

Art and artwork, portraits

Two new artworks

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Female Torso, posing in tight dress

I took an image off the internet and substantially changed it (enough so that I made it my own, according to those in the know). I wanted to see how to draw folds in fabric, especially how it draped around the human body. It also interested me to continue to study the hand, and I enjoyed drawing these. Josephine told me they were too big. One person said they made the woman look like a man, even a drag queen, but my response to that was, well, it only adds a nice bit of ambiguity, which is fine by me! In fact I prefer that to the clarity of the following piece, much as I know that my brother will love it, and that is is “better” than the drawing that preceded it in this blog (see the entry below).

Claire, older sis and Adriane, the younger, best of friends

Both of these drawing are done entirely in colored pencils. I used a colorless blender sometimes, but mostly used either white or a lighter color on top of the other colors in order to “smooth” out certain surfaces, and on others, like the black fleecy top that Adriane wears, I used only the technique of drawing tiny circles in black on top of indigo blue, to imitate the texture of nubbly fleece.

BTW, I still see some flaws, which I aim to fix before sending it on to my brother, but I won’t masochistically point them out this time…Why flagellate myself if no one else will necessarily be stunned into unconsciousness by them?

I want to write about Joe, but it has been very upsetting, so I am trying to draw a dream I had about him a couple of nights ago…If I am successful, I will post it here. Or I will write about it in time.

ALS, Blog, Book, Poetry

New Poems and Update on Joe and also on Pam

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In truth, of the following poems one is not really new, since it was published some years ago in a volume called “Three Poets” (no longer available) put out by the Tunxis Poetry Review of Tunxis Community College in Connecticut. But I have always liked it. I will be including both in my second poetry collection, so I am putting them here as a kind of enticement, even though neither is about mental illness and/or schizophrenia. (Those I hope to “pre-publish”  before the book is out…maybe…)

 

BTW: A few notes for clarity and in case you are not familiar with a few words, forgive me: “lieder” means Romantic songs, in German,  “Bawds” comes from the same root as “bawdy” and means, essentially, “bawdy women”, “a water strider” is an insect… “la nostalgie de la boue” translates as “a longing to be back in the mud.” Also, I am sorry that I could not space it better, but the cut and paste option did not allow it.

 

CONSIDER THE BULLFROG

 

who

night and day

belches “jug-o-rum”

to a teetotaling

bog; whose noisy

lieder of drink

and bawds last all

summer long;

who nibbles

asterisks

of water striders

dimpling the surface

of the black pond

and ensnares

tangy damselflies

with the quick ribbon

of his tongue;

who after all

is not a Prince

in disguise; who

suffers himself to be

pithed for science;

who sculls

through sweet

mud in la nostalgie

de la boue; who

is Frog among frogs;

who needs no god;

who does not know

he will die.

 

The other poem, which is new but which I do not believe I will publish before I publish the book, is this one, a “nature poem” of a sort. It was written for my writing group “prompt” on the word “song or singing” as I recall…

 

THE SONG OF THE ANT

“For the listener, who listens in the snow...Wallace Stevens

 

In those days I was always cold

as I had been a long time, mindful of winter

even at the solstice of my high summer days

 

 

always, always the crumb and crust of loss

and near-loss of everything held dear

before the saison d’enfers and the ice to come

 

 

There was always the wind

There was the wind making music,

and I, at one with the quirky stir of air

 

 

bowing the suppliant trees

bowing the branches of those trees for the sound

of songs long held in their wood

 

 

Changes change us: rings of birth, death, another season

and we hold on for nothing and no reason

but to sing.

 

 

Joe has rallied some, yes! yet again, though he is clearly in a terminal decline. Last Thursday, a week ago, we thought he might survive only a day or two,  as he was in and out of consciousness and looked frankly terrible. But the following Saturday he was surprisingly alert again, and so it goes.

 

I was unable to visit him until yesterday, due to sheer exhaustion, and an inability to get a ride there  so that I didn’t have to drive myself in an unsafe state. But when I saw him — that is, Friday —  he was actually able to manage a bit of a smile, and appeared happy to see me. His first words in fact, spelled out on the letter board, were not about him but instead were, “You are beautiful” — what a sweetheart! When I asked him how he was, he spelled only that he was tired. He did tell me that he had trouble hearing, and when I offered to get the nurse to clean out his ear and fix the towel that blocked his other ear, he was grateful. But we couldn’t talk long as he grew weary after a scant twenty minutes. I offered to cut my visit short and return on Monday. That turns out to be easier on both of us anyhow as the letterboard is difficult for each of us in different ways.

 

joe’s level of consciousness remains variable. The irreparable and growing leak in his stoma (a “stoma” literally means a hole, which in this case is the hole in his throat and trachea that holds the tube through which air flows from the machine into his lungs) means that his O2 — oxygen — levels vary tremendously. The fact that he is also very “tired” is also an indication of lowered O2 concentration, though he may not understand this.

 

He did as I reported last time  agree to the DNR designation (Dr O, with whom I have been in touch, because she was so helpful with Joe early in his illness, told me that this is now called AND — Allow Natural Death). I do not think he completely understood its meaning, though, as he asked me two days later. I had to tell him it meant no heroic measures “like cracking his chest and massaging his heart” to make it truly clear to him, even though, if true, it also sounds a little extreme…After all, artificial ventilation is already a heroic measure!

 

As it is, unless the fistula forms (in his case a pathological kind of tube or passageway) forms between an artery that branches off of his aorta, and his weakened tracheal walls, which would cause nearly immediate death (with hopefully immediate unconsciousness without suffocation or any “drowning in his own blood” sensation), it looks like he will die of slow oxygen depletion and carbon dioxide build up. This would probably be the best way…Although his cousin tells  horror stories about “hypercapnia” I think he has been researching traumatic and acute cases of such carbon dioxide excess and not the slowly developing kind that Joe is experiencing. From all I muyself have read about ALS and respiratory failure, Joe’s dying should be painless and “easy.”. Especially if he only gets more and more tired and simply falls asleep…

I have been very weepy about this, esp when Joe has not been able to be very alert and it looked like death was near. But on Friday though he was “tired” he actually spent more time asking me how I was doing than  talking about himself…He “talks” mind you, by spelling via the letterboard. Which means that he looks at me to say yes, and away to say no, while I go down the board by row, and then across the letters, saying them by name…It is very laborious, less so for me because I have memorized the board, than for him because it is clearly tiring. I no longer stay more than a half hour, and try to keep it to 15 minutes. I try also to visit more often than once a week, and if I can, I go every two days or so. Still, as you can imagine, it can get exhausting.

 

I hope I haven’t repeated myself several times in the above, but if I have, forgive me.  I too am tired, though hardly as tired as Joe and not for anything near the same reasons. It is only the stress of having two dear friends “in extremis” so to speak, Joe near death, and Cy seemingly  having surrendered to “fading away.” I know that Cy is 92 and lost his beloved wife three years ago, and it is, I suppose, his right to want to “fade away” but goddam it, his physical health is pretty damn good, but for his own deliberate neglect of it. And it pains me to see that, if nothing else, he is just allowing himself to abdicate living and not even trying to accept treatment, either for his physical ailments nor for any depression.

 

Anyhow, I myself am not depressed at all, sad, yes, weepy as I said, yes, but in general just tired, sometimes headachey, but well enough. I just need to carve out enough time for myself to recuperate each week and NOT visit so much that I cannot do so. I know I need to find enough time to write and do art, as both replenish me in ways that spending time talking with others does not always do, much as I love my many friends. Hey, just writing here has done something towards that end. So thanks for listening, all you, and I’ll be Bach if you’ll be Beethoven for me…(okay that’s a stretch but I hope you’ll be waiting for me, nonetheless.)

 

 

Art and artwork, Love, portraits, Uncategorized

Portrait in Pencil: Two Teenaged Girls

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Actually, these lovely young women are my nieces, my brothers’ daughters, and I scarcely do them justice here. But  rather than their appearances singly,  it is the wonderful and loving relationship that I aimed to show more than anything else. Their mutual devotion is so very clear, the younger Adriane on the right and her older sister Claire on the left. I think the photo that this drawing was taken from is surely one of the most delightful I have seen, at least in terms of any recent photo of my extended family.

I am aware of the misalignment of the eyes and of other faults large and small, but to me it is the expression of love and affection between the girls that is much more important than these imperfections (plus, frankly, I have to admit I ruined the original portrait entirely trying to “fix” it, trying to “perfect” the placement of those eyes..I ought to have known better.)

 

My brothers' daughters, Claire and Adriane
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Medical Research – Is it Mostly Bogus?

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This is the conclusion of a recent article from The Atlantic Magazine article:

“Science is a noble endeavor, but it’s also a low-yield endeavor,” he says. “I’m not sure that more than a very small percentage of medical research is ever likely to lead to major improvements in clinical outcomes and quality of life. We should be very comfortable with that fact.”

http://www.theatlantic.com/magazine/print/2010/11/lies-damned-lies-and-medical-science/8269

Have we been sold a bill of goods about the usefulness of psychotropic medications? Are we really taking more or less placebo drugs, or  medications that have not truly been proven effective except anecdotally? I feel for example, that Zyprexa helps me — to read and feel enthusiastic about life etc, but who is to say that I would not feel the same off all antipsychotic drugs, after a slow weaning period? I do not mean to suggest that everyone should stop taking their meds, I only wonder, after reading this article and others  if we really know much about the research that has gone into “proving” the efficacy of what we are being told to take for “our own good.”

Here is my own comment on the article above, which you will see at the bottom, if you read that far:  “Haven’t read all comments but if it has not been already stated, chaos theory is relevant here: sensitive dependence on initial conditions means that especially with regard to weather, it is impossible to predict the behavior of large systems even a day in advance, as we in New England know all too well. In terms of medical research, this holds as well, and indeed, it is all too often the case that what a researcher predicts is precisely what she or he “discovers”. Real scientific research should aim to falsify the hypothesis, rather than “prove” it true. Science can never prove anything absolutely true, it can only evaluate the relative usefulness of a hypothesis by the fact that so far no one has shown or proven it to be wrong.”

It is the last part that is particularly relevant: no one tries to prove their research hypotheses WRONG any longer. They only want to prove them correct. But that is easy. You simply manipulate a little data,  or eliminate those irritating bits of information that aren’t as pretty as the those that look really good when published in respectable journals or when advertised in glossy two page ads to the public. But truly scientific studies ought to try to show that a hypothesis, say that Zyprexa is an effective treatment for schizophrenia (a “squishy” diagnosis in itself) is  in fact not true, and ought to do this many times in many different ways. If  many studies fail to show that Zyprexa is not  ineffective in treating schizophrenia, then doctors might be justified in using it as a treatment, for the time being, until, at any rate, it is shown – if indeed it ever is — to be ineffective, or less effective than some other treatment. That is the correct use and usefulness of the scientific method. But research rarely proceeds that way any longer. All researchers care about these days is getting “proof” something is “true” that is, that something “works” which they do in all too many cases by massaging the facts and data.

If anyone is interested in discussing this article, please add your comments to this blog’s comment section and I will post them below, with my own responses. I would very much like to hear from you, esp with regard to anything you have to say about psychotropic drugs and your own experiences and knowledge of relevant research.

Uncategorized

Portrait, Embellished, Our Prez

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No words needed. You can interpret this as you please. No offense intended in the slightest. I just felt it needed color!

 

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Caffeine and Psychosis

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I just received this notice in my in-box and wanted to pass it along. Although the article comes from Australia (despite its mention of a Maori man, typically of New Zealand)  and it does not appear that “Demon Shot”  is available here, many other energy drinks are. And most of them are based on caffeine, the content of which in such drinks generally ranges from the amount in a cup of strong coffee to nearly 3X as much. If three cans are consumed in a short time, that means one has ingested about 900mg of caffeine.

Energy drink ‘triggers psychosis’

Danny Rose, AAP Medical Writer | 22nd February 2011

CAFFEINATED energy drinks may trigger a psychotic episode in people with mental illness, an expert has warned after documenting the case of a young man with schizophrenia.

The 27-year-old Maori man had two separate psychotic events a week apart linked to his intake of the drink Demon Shot.

Professor David Menkes said these events occurred at a time when the man, who was prone to persecutory thought and hallucinations, was otherwise responding well to anti-psychotic medication.

In the first instance, the man drank two 60ml bottles of Demon Shot and later reported experiencing recurrent thoughts, over several hours, of “people wanting to harm him”.

“One week later, he drank three Demon Shots over 15 minutes,” said Prof Menkes, who is Associate Professor of Psychiatry at Auckland University.

“He was observed to be emotionally labile (moving from one point to another) – initially laughing and talkative, later becoming restless, withdrawn and argumentative.”

Other symptoms included a rapid pulse and insomnia, which took 24 hours to subside.

The man described again having had paranoid thoughts over several hours and an experience “consistent with a psychotic episode”.

“The fact that our patient had the same reaction on two distinct occasions is important,” Prof Menkes said.

He said there was known cases where a high intake of caffeine may exacerbate a psychotic condition though this appeared to be the first linked to consuming energy drinks.

The man’s case was “evidence that some patients with treated schizophrenia may be vulnerable to exacerbation of their illness by caffeine-containing energy drinks”, he said.

Demon Shot drinks are widely available in Australia and New Zealand and they contain 200mg caffeine plus taurine, B vitamins and guarana, which may have other stimulant properties.

According to its website, each Demon Shot provides a “massive energy hit that delivers up to six hours of concentrated mental and physical responsiveness”.

The drinks also carry a warning, which says it should not be consumed by people sensitive to caffeine, and no more than two drinks a day.

Blog, Poetry, Writing

Brad P. Olson’s New Poem: a Must-Read

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I loved this small gem of a poem, which I hope Brad doesn’t mind my stealing off his site and posting here. It can also be found at Brad’s site:  http://bradolsonwriting.wordpress.com/

The Day You Were Born

For Grace

The day you were born

I held you swaddled
in the crook of my arm.

Now, 10 months later,

you turn your head
as I try to wipe your nose.

I could hold your head still,

but, to do that,
I’d have to put you down . . .

I don’t look forward to the day
when you’re too grown up

to carry from one place to another.

© 2011 by Brad P. Olson. All Rights Reserved.

"While I breathe, I hope"

Mammonelle

Ceterum censeo MAGA esse delendam.

bluebird of bitterness

The opinions expressed are those of the author. You go get your own opinions.

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A Blog About Surviving Trauma

My Life After Narcissistic Abuse

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An intellectual, emotional and spiritual spittoon.

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WordPress.com Blog

News, Tips & Website Tutorials

Beyond Meds:

Everything Matters

Mammonelle

Ceterum censeo MAGA esse delendam.

bluebird of bitterness

The opinions expressed are those of the author. You go get your own opinions.

eyespider

Kate Greenough's daily drawings

Polyglottes

Réussissez vos examens et certifications de langues

Walking through the fields of paper

Gourmet Paper Mache

Not your third grade paper mache

Amdall Gallery

Portrait Art and Paintings by Jon Amdall

Joanna Moncrieff

Books, papers and blogs by Joanna Moncrieff

WAGblog: Dum Spiro Spero

"While I breathe, I hope"

A Blog About Surviving Trauma

My Life After Narcissistic Abuse

Neurodrooling

An intellectual, emotional and spiritual spittoon.

COLLECTIVE

My great Wordpress blog

field of thorns

WordPress.com Blog

News, Tips & Website Tutorials

Beyond Meds:

Everything Matters