Changing Therapists and Current Concerns

When I was in the hospital this past February, I made the tentative decision to leave Dr O, despite having seen her and indeed depended upon her for nine years. At the time, I was feeling, I dunno, burned? Not in the sense of angry but in the sense of, uh, oh, I’d better cut out while I am not too hated, because soon she really will be sick of me and won’t remember anything about me but how much she hated me…Where did that come from? Well, you might laugh, but I did not. It came from having called her on her cell phone, as she has encouraged me to do, on a working day, and reached her instead of her answering machine. I had wanted to know if she had informed the book publisher about my hospitalization. I was taken aback by the sharpness and peremptory note in her voice as she answered. It did not sound like her .

“I, uh, it’s me, Pam, I was calling to –”

“Yes, Pam, what do you want?”

“It sounds like you are sick. I’ll call back later. I was expecting your answering machine anyway.”

“Tell me now. I don’t want to have to answer my machine or call back later.”

“But it is clear you are in a bad mood. I don’t want to talk to you now…”

“I’m not in a bad mood, I’m ill and you are calling me at home.”

“How was I to know that. It is a work day and this is your cell phone, you shouldn’t have picked up if you are sick. You are allowed to be sick you know…”

“Why did you call?”

So I told her, then when she said she would call the Press, I hung up. But I felt terrible, because it was clear that she was angry and it felt personal, felt as though she was angry at me. But I didn’t know why, could only imagine, and so I did, I came up with 100 reasons why she might be angry with me, hate me, want to get rid of me or leave me…This is important, that reasoning, because is lies directly beneath my first impulse to leave her, though it is not and was not in the end my primary motivation. Because I feared she wanted to leave me, I determined to leave her first. It was an old old story, and not a healthy one at all.

But as I said, in the final analysis, it was not really the reason I wanted to find another doctor. No, that was for two other more reasonable, um, reasons: one was that I did not want to have to traverse the state to see her any longer. It took me all the morning and part of the afternoon to do so, which ended up exhausting me for the rest of the day. That, plus the fact that I did not even drive myself, so it cost me extra to pay Josephine to drive me there and back. But more than that was the fact that the doc at the hospital was so – what? not into power, not into authority, or at least played it that way. He would ASK me what drugs worked for me and at what dose. And then proceed to prescribe precisely those drugs, not just ask me and then ignore what I said. Dr O never asked me what drug I wanted or what drug worked for me, simply decreed what I would take and then asked me to take them. She only listened to me when i refused to take them, perforce.

Now, this is not to make Dr O seem like any sort of dictator, because in fact I was very resistant and noncompliant, and often refused any med at all that seemed to help, so I could be infuriating. Also I was in and out of the hospital when not taking her meds. It was only she who had the patience to work with me for 6 years to finally find a combo that worked for me without any undesirable side effects (except a little sleepiness) so that I’ll take it willingly. Nevertheless, I think she is so used to my being ill that she cannot actually treat me like an equal, and someone who might be getting better..For instance, I really need to be able to call my shrink by his or her first name, esp if they call me Pam, which i would insist upon (because I cannot feel comfortable sharing personal information with someone who still calls me Miss Wagner!). It is patently ridiculous at my age that I should call someone twenty years younger than me by a title when they do not use one for me…But I would rather be Miss W than Pam if he or she is going to be Dr so and so at age 35-45!

Anyhow, where was I? Reasons why I was leaving Dr O. Yes, well, be that as it may, I had a feeling as well that she herself was not going to be staying. Don’t know why, but I just had this strange niggling feeling that somehow it was time, or would be. Then I mentioned, in my first appointment post-hospital that I might need to have some help finding a local therapist. She did not seem surprised or if she did, did not object at all, mentioned in fact that she was leaving her sleep practice in June, which precluded my continuing on as her sleep patient in any event. That gave me the first indication. Then when I returned two weeks later, which was last week, I said to myself, I know she is ending her practice of psychiatry as well, because she is moving, moving away, moving, well, inland…I knew this with absolute conviction, not delusionally. I knew I could be wrong, and I was hoping I was. But somewhere deep down I suspected I was not.

I was so exactly on the money it was uncanny. She was moving, was ending her practice. I asked her if she was moving inland. She made light of it, said she wasn’t going closer to the coast if that’s what I meant, but that wasn’t the point of moving. I said I doubted that…And she said nothing. But it scared me, as it always does, because I still feel that I will drown when Antarctica and Greenland melt, as they will MUCH sooner than any scientist now predicts…

I will not continue on that path at this time, however. I was speaking of changing therapists. So now I have made an appointment to see someone new, and only 10 mintues away from me, close enough that I can actually drive there myself. Very close, in fact, to the Vision Therapist I used to see. I do not know how to interview a prospective psychiatrist, or to doctor shop. All the other switches have simply been handed me, and they stuck, or I stuck with them as they seemed reasonably good, and i liked them. But this time, I have no one to hand me someone with their imprimatur and am on my own. I don’t know how to do this. Will I know who is good, who I can trust? I am very bad at that, trusting all the wrong people. Well, this person at least comes recommended by someone Dr O knows well, or at least knows. That ought to count for something. But it is a he, and I have not seen a male shrink in many years, nor had a good experience yet. Dunno how that will go.

But things change and so do people. The doc in the hospital was male, both of them were, and I liked them both. So maybe this time I could tolerate it. Dunno, but we’ll see. If I can, I will write again on April 1, which is when I have the consultation. Will let you know how it went, if it turns out to have been productive in any fashion.

Note: All the information that I have been reading points to two things that I find very disturbing: one is that Inderal (propranolol) which I take for akathisia, a side effect of many psychotropics but for me of Geodon, apparently and quite effectively “blocks traumatic memory.” Now this would be fine, except that it seems to block the formation of emotional memories of ALL bad events, or at least block the bad emotional memories of the events, such that if you recall the event, you cannot actually go back and feel the way you did at the time. Now I imagine that this would be desirable for most people, who usually do not want to suffer from their memories, but I feel deprived of so much of my life, having been on Inderal or a beta blocker (the same class of drugs) for thirty years. I never knew why i could not quite feel the memories I wrote about the way others seemed to be able to feel their memories…I can see them, but I am outside of them, looking on. I feel nothing. I literally look in and see myeslf from the outside, that is how detached I am from the person I used to be, all because, as i believe, I have no emotional recall of the event. Which is why I want to stop taking the inderal…If my blood pressure rises (it is also effective for that) then I will deal with it another way, but I need to see if not taking the Inderal brings back something vital to my memory.

Number two is much more problematic, because it involves the very medications that keep most of usw with this ilness sane and this side of an institution: most antipsychotics and even the SSRI antidepressants block dopamine to a greater or lesser degree. Now no one knows where or even if people with schizophrenia are actually suffering from an excess in dopamine. That is the theory and it may be that dopamine is involved in some fashion but it is not the whole story, The newest drugs are now working on glutamate, another neurotransmitter entirely. Either neurottransmitter may not affect the entire brain the same way. What is certain is that the drugs tamp the dopamine levels down. Supposedly this is only down to a “normal” level, but who knows what a normal level of dopamine is? We know that dopamine is the pleasure molecule, that without enough of it people become thrill seekers, needing highly exciting situations in order to experience pleasure. But what does it mean that many SSRIs cause sexual dysfunction and/or loss of interest in sex? It implies that with suppression of dopamine (and cure of depression?) the dopamine falls below “normal” producing this lowering of normal pleasure and pleasure-seeking.

It is well known that many fewer people with schizophrenia marry, have children or even fall in love…I myself feel detached and cool, feel no particular sexual urge or even the desire to meet a significant other, let alone pursue someone with marriage in mind. Now I’m wondering if this was not me, not really, so much as the anti-dopamine drugs I’ve been taking most of my life…What a tragedy if the reason I feel no love for anyone is the lack of dopamine the drugs forced on me! What a pity if the coldness I feel towards all of my life and all people in truth, is due more to my drugs, the inderal as well as the anti-dopamines than to any deficient genetic make-up . It’s like the wind farms and the sonar of nuclear submarines etc. We build them as if they are reasonably green, having zero effect on the enironment. only to find out years later that the effect was devastating. (I suspect that the wind currents and subsonic vibrations given off by mega-windfarms might be discombobulating our honeybees and even undermining the vitality of our bats (both dying off alarmingly in 2009). What I mean is, we have developed all these so-called miracle drugs for schizophrenia and depression etc but do we really know what they do to the person, quite apart from the alleged antipsychotic effects? What about other costs to the individual? What are they and has anyone thought to look for them? Does anyone have a choice in the matter? Is it fair? (Obviously no, it is not fair, but then life isn’t fair, so that is a silly question…) Should they have a say, a choice?

These are notions that currently concern me. I wonder if anyone else has been pondering them…If the honeybees and bats and dying whales and dolphins deserve our attention, as most surely surely they do, the highest priority, I would hope that somewhere down the pecking order we with schizophrenia might deserve someone taking a good hard look at just what the suppression of dopamine might be doing to us in the larger picture as well as the smalller one. Just as schizophrenia, I am convinced , does NOT condemn one to obestiy, but the drugs do, just so I believe that the drugs do a number on us the full nature of which we have no inkling of.

Note: this is NOT to encourage anyone to stop taking their medication. Obviously I still take mine, fearing psychosis and the return of the voices far more than I want some dopamine at this point. But I ‘d like some input in the matter, too, and wish they’d develop some better drug or treatment protocol than the present one. Surely I can still be human even with schizophrenia. What with Inderal and the antipsychotics etc I feel more like an automaton, or Mr Spock or Data.

Artwork – Mu’umu’u Mama

Mu'umu'u Mama
Mu'umu'u Mama

This is the one slide that didn’t make it into the mini artshow, even though I had meant it to. So here she is, about twelve inches tall or so, and of mixed ethnicity, given her lovely dark skin and incongruous Roman nose! But mixed heritages are in these days so I guess I can be forgiven, being her creator…

Three Schizophrenia Blogs plus…

Judy Chamberlin was hospitalized for depression in 1966 and then against her will in a state hospital, which she found horrific. That experience spurred her life work as an advocate for psychiatric patients and better treatment, gentler, more dignified treatment in fact. But I should not tell her story, because I only today found her blog, thanks to Bill W. No, you can read it in part at the Boston Globe here

http://www.boston.com/bostonglobe/ideas/articles/2009/03/22/a_talk_with_judi_chamberlain/

and then follow it in more detail at her blog here:

 

http://judi-lifeasahospicepatient.blogspot.com/#mce_temp_url#

 

A WONDERFUL blog is Yin and Yang, Kate K’s blog at http://wanderer62.blogspot.com  

 

Kate writes of her journey from schizophrenia down the road to become the person she is inside, the person she wants to be. This entails describing in her wonderful, meditative prose her efforts to regain her singing and songwriting, her ongoing painting enterprise and her struggles with weight and fitness, voices, and isolation. Along the way, there are forays into spirituality — both buddhist and otherwise, all laced together with Kate’s careful and exquisitely thoughtful reasoning. 

 

As for Christina Bruni’s website with articles, memoir and blog, let her speak for herself, because she says it best: “My goal is to be the Rachael Ray of the recovery movement. Have you ever seen this chatty, gregarious cooking expert and lifestyle show host? One day I watched her on TV while I waited in the doctor’s office. Her infectious good humor cheered me so much that I wanted to tape her shows and replay them at night when I got home from work.

It was then that I decided that I want everyone who meets me—whether in person or on paper—to feel good afterwards. I’m open and honest about what happened to me because I believe that people can recover. “Only silence is shame,” to quote the Italian anarchist, Bartolomeo Vanzetti. And if I kept quiet, what would be the point?

I seek to be a force of good in the world, because the illness destroys, and through my recovery I want to create things of beauty and show people a better way.  Quite simply, I couldn’t bear to see someone go through what I did and feel there is no hope, or worse, not get the treatment that works.  If I remained silent, I’d be complicit in perpetuating the stigma.”

 

http://www.christinabruni.com/index.html

 

 

Overcoming Schizophrenia, which is Ashley’s site, is also tremendous. She is in her 20s, an accomplished writer, and though younger than the rest of us, that is an advantage. She can talk about what it is like to recover from a first episode and the hope that recent diagnosis and rapid treatment now offers.

 

http://overcomingschizophrenia.blogspot.com 

 

 

 

ArtShow (mini)


14 pictures
View Album at Shutterfly

You can see most of what I am exhibiting this weekend at the above site. I have displayed most of it here before, though perhaps not all of it. In any event, it might be nice to see most of it collected in one space. I hope it is not all distorted as this “cover picture” is…

At the moment, I have the Trudy child, Dr Jumoke and Decorated Betsy all sitting in my one room staring at me, not to mention the tortoise standing on its shellside glaring and looking most uncomfortable. The Muu’muu Mama is the only one who seems cheerful, enjoying her new youth with her black hair and big smile.

Ah, this is silly I suppose, but it is gettting crowded in here. Still I enjoy it, all these humans staying the night for the week!

New Papier Mache Artwork

I have been madly completing artwork for the show coming up on the 28th. So far have done three bowls and finished the Sitting Child Trudy…Have two more bowls waiting to be painted…And a goose to make for Ruth. Meanwhile, “The Book” is not yet printed, but it looks like it will be soon…The one poem I hate, Solo for Two, cannot be deleted, so I must settle for it staying in  but the other corrections were made. I wish I had not been told that the book needed no editing, which is patently silly, ALL books need editing! But that is what they told me, so I did not look at it again, until it was too late to do much. I should have known better! I ought to have known better, as that is precisely what Diane K, our erstwhile editor told us about Divided Minds, and so opted out of helping us. But nothing could have been further from the truth, and luckily we knew it. She was basically trying to sabotage the book, even Lynnie thought so. ARGH, that is water down the sluices…What is important now is that the corrections I really needed made in WE MAD were in fact made, and the one poem I do not like may in fact appeal to someone. So I will put up with that one poem staying in, and hope it does not mar the entire thing…

That said, here are the new art works, first the three bowls, which take about a day to paint each, more or less, and then Trudy, which took several months of intermittent work.

Two Bowls, one 4" and one 7" - papier mache
Two Bowls, one 4" and one 7" - papier mache
Odd Botany bowl -- these plants are not real anything
Odd Botany bowl -- these plants are not real anything
Another shot of Odd Botany bowl
Another shot of Odd Botany bowl
Ditto
Ditto
Final side of the Odd Botany bowl
Final side of the Odd Botany bowl

 

trudyfincopy

Trudy is about three feet tall but on her hassock is somewhat taller. I’d say she is about the size of a seven year old? But I dunno, since I haven’t seen a seven year old in a while. 8)

Schizophrenia and Sleep: Is Psychosis a Waking Nightmare?

I believe that I have written before about having narcolepsy as well as schizophrenia, and while it is up for grabs whether or not this sleep disorder as well might be caused by Lyme Disease, at this point it seems moot in both cases. I still seem to need the psych meds as well as the narcolepsy meds, so what difference does it make if the Borrelia bacterium originally caused the disorders? It seems that I have them now, so I must go on from there…

 

Anyhow, ever since college, at about age 22, I have had a terrible time with daytime sleepiness, no matter how much sleep I got at night. I could never stay awake during the day unless I were walking or physically active. Once I stood still, and god forbid if I sat down, I was immediately subject to an overwhelming urge to sleep and it seems to dream, the latter not always coming after the first.

 

The dreaming before I feel asleep only grew worse as I aged, until in my late thirties and early forties I began to have to ask others whether I dreamed something or if it really happened, because I could not tell the difference. I did have a kind of a touchstone, the very fact that I had to ask the question, seemed to mean that it did not in fact happen, but I never quite trusted that understanding until after I’d gotten the denial. In my late forties, it was happening every day, and in addition I was hallucinating visually, not scary things, but hallucinations like stories that I could discuss with Dr O objectively, but bizarre enough that she was concerned. It wasn’t clear how much of this was REM-sleep intruding into the waking state, a phenomenon of narcolepsy and how much was schizophrenia, especially when the hallucinations spoke to me and told me to harm myself, and I obeyed them.

The reason I relate all the above is that we eventually solved the problem, at least this one, and while I told the tale on my other schizophrenia site I feel it is important to tell it here as well.

 I haven’t wanted to muddy the waters before now or get people’s hopes up for a drug that might help one person in a million. But who’s to say what might be helpful or not in other cases of schizophrenia. So here, forthwith, is a fuller story of how I recovered.

 

In 2004, I did something quite desperate. In response to voices telling me to immolate myself, and on an impulse to put an end to their tormenting me, I set fire to my left leg, with the result that I had third degree burns and skin grafting. I had burned most of my forearms before this, but incrementally, and had burned out cigarettes against my face too, but have never done anything quite so dangerous as this. I realized how close I had come, pouring lighter fluid over me, to setting myself on fire, not to mention the building itself. It could not happen again. So the first step, beyond choosing life over death, was vowing to take every medication I was prescribed as prescribed, without fail, until the doctor’s orders changed.

 

I made up a contract, after I got out of the hospital, and gave it to my visiting nurse, saying that I would not refuse a single dose of medication ever. And in fact, I did not. That certainly stabilized me to the point where I stayed out of the hospital, though I didn’t feel particularly well. Then, I finally agreed to try a drug Dr O had for a year been urging me to take. Xyrem, a night-time drug for narcolepsy, is meant to regulate sleep in narcolepsy, help the patient attain slow wave sleep, and thereby enable her to be more awake during the day. If I could be awake and alert during the day, the theory went, the spells of waking dreaming would  happen less often, I would need fewer stimulants, and the sleep attacks would cease…among other things. 

 

Xyrem is not a drug without a difficult past. Once known as the “date rape drug” it has faced bitter controversy. Hearing were held in congress over whether it had any therapeutic uses. Luckily, testimony by persons with narcolepsy convinced the powers that be not to ban the drug outright. Thanks to their efforts it is still available, under very special circumstances, and with careful supervision, from one central pharmacy in Michigan or Illinois, as an orphan drug, schedule III or IV.

 

It is however a difficult drug to take, and I admit that no matter how quickly I get it down, I dread it each time. A liquid, just a tiny amount, maybe 6ml, mixed with water or grape juice or non-acidic kool-ade and taken just before bed. It’s bad tasting — actually on the salty side — so you have to dilute it well, but not more than they say. Then, the worst part, you must pour a second dose, put it on your nightside table, set an alarm for 3-4 hours later, wake and take a second dose, no matter how deeply asleep you already were!

 

When I first started taking it, falling asleep terrified me, because I just tumbled into blackness after twenty minutes, and the plummeting off that cliff into unconsciousness was precisely what had always made me reluctant to sleep at night. I had a hard time falling asleep for weeks, feeling the bed rock beneath me, my body trembling and my ears roar, and all sorts of unnerving bodily sensations that turned out to be more fear than anything else. After about a month, though, I was able to take the drug without trouble, except for the middle of the night awakening, which bedevils me to this day…

 

I found a website, MyCalls.com where you can set up a schedule of recorded messages that they will play at a certain time at night when they automatically call you to wake you, but I find that I barely hear the phone after a certain number of calls, and when I do, I simply pick it up, press one, to cancel the call, and hang up, then fall asleep again. Even if I don’t manage to do that much, I know the phone will quit ringing eventually, and that the calls will cease after three repeats. I’m lucky if I manage even to hear them at all; if I’m in a really deep Xyrem-doze at the time I’ll simply sleep right through.

 

The effects of taking Xyrem can be felt within two weeks if you’re lucky, though it takes months for some, and for me it was a miraclous 12 days. My improvements however, had nothing whatsoever to do with narcolepsy, which was the strangest thing. Improvement in that sphere did take months to appear. What improved were the last symptoms of schizophrenia.

 

The last little but still important symptoms just fell away: I began to look at Dr O and finally knew what she, and certain other people, looked like; I began to gradually, shade by shade beome desensitized to the color red, which had terrorized me for decades; when the evening visiting nurse asked me if had been hearing any voices that day, I could honestly answer, No. I felt little paranoia, had no trouble distinguishing reality from non-reality, and for the first time began to understand why my delusions were delusions and that  the voices were only false perceptions inside my head.

 

Since we hadn’t started or stopped or changed any other drug in a long time, it seemed clear that Xyrem was responsible for this miracle. I really don’t have any idea if it would work for anyone else. Dialysis worked for Carol North, a former schizophrenic turned psychiatrist, who wrote WELCOME SILENCE. Since then, according to her,  it has worked for no one else and she does not recommend it. So I might be the ONLY one that Xyrem could help. Nevertheless, a nagging part of me reminds me that psychosis is often described as a waking nightmare, and perhaps this is for a reason. If Xyrem helped this go away, literally, for me, (it is part of narcolepsy), who’s to say what it would do in others with schizophrenia…

 

Now it is 2009, a couple of years after I wrote most of the above. I would like to add  the following: when I get my 8 hours of good Xyrem-mediated rest at night, with the proper proportion of slow wave delta sleep, I feel like a million dollars the following day.  That does not, however, keep all my symptoms at bay, nor does it enable me to cope with everything as well as I wish I could…My apartment seems to “fall apart” and it is hard to get it together by myself, so Lynnie pays my friend Jo to help me every two weeks (she is also a professional housekeeper) lest it get completely out of hand. My stamina is still limited, so I have to keep a careful watch on how much I commit myself to each day, and in a sense how far from home I go (lest I can’t get back before I get exhausted).

 

 

Exhaustion is my biggest fear…that and sleepiness. I am so afraid that I will end up somewhere, as I have, and suddenly find myself overcome with sleepiness, and have nowhere to fall asleep for a half hour. That feeling is such agony, and indeed can be overpowering. What then? is my worst nightmare…And the outcome has sometimes been negative to the max.  I do my best to take my medication both at night and on time during the day to avoid getting sleepy when I can least afford it. ( I’m always sleepy at 11am, and usually sometime between 3-6pm) I have my cell phone set every day at 11am, but too often I ignore it or find myself somewhere too incovenient to stop and take a pill, to my great detriment later when I find myself suddenly drowsy while driving, or feeling a sleep attack coming on while visiting Joe in the hospital…

 

Nevertheless, Xyrem has been a miracle drug for my schizophrenia (Lyme-induced or not). First of all, the other drug cocktail apparently treated my more florid positive symptoms, but according to my twin, a psychiatrist, the Xyrem treated the negative ones, made me seem normal: all the things I could do truly did knit together. She didn’t know I was on it, but when I appeared at her door after taking it for about a month, she opened the door, took one look at me, stepped back, and said, “Oh. My. God.” Then she rcovered a bit, “You look wonderful, Pammy, normal.” She says I looked her square in the eye, was wearing something colorful for the first time in decades, had curled my hair and was even wearing make-up, (never again!) as if I actually cared how I looked. She couldn’t believe it. She said my walk was almost normal, that I was less awkward in my body. She felt like she had her twin back.

Two Poems: The Middle of Nowhere

Although this poem, under  a slightly shortened title, will be in my soon to be released book, WE MAD CLIMB SHAKY LADDERS, I showed the rewritten version to my writers group tonight . It is basically a true story, about the friend whose recitation of a Gerard Manley Hopkins poem instantaneously converted me from a poetry skeptic to a poetry lover…but read on and you will see what happened.

 

The second poem was sparked by my recent hospital stay but not based on it, rather it is based on the misinformation purveyed by movies such as the ones mentioned in the beginning of the poem, and also in the books from which the movies were made.


YOU WERE A POET ONCE (NOW YOU ARE

LOST IN THE MIDDLE OF NOWHERE…)

 

You were a poet once. You touched my soul

with the gift of poems, teaching me to read and write–

oh, inevitably to write them, for writing made me whole

and I could never not write. I had no special goal,

only to “pour out a poem” and work it right.

 

That took me years. I was such a fool —

dreamy cups of poems, quote unquote, only wasted good ink…

But I was speaking of you. You gave me the tools

to teach myself; you should have returned to school.

You found vodka: you could not, after one drink,

 

stop. And though it seemed deliberate, a choice,

I suppose you couldn’t help it. On conversion day

you recited Hopkins’ “Spring and Fall,” your voice

for once not blurred by Popov. (Still, I didn’t dare rejoice.).

You were so sure, so caught up in what you had to say.

 

It changed me utterly. Few experiences work such magic.

Why you quit poetry for drink I’ll never understand.

Life made you querulously unhappy, so there’s a logic

in your refusal to live. But I’ll never not think it tragic

how your gift to me soured in your own hands.

 

 

 

REALITY CHECK

 

First, you have an address, a 9-digit zip code

and two free patient telephones, so you’re not lost

in the middle of nowhere, this is not the movies.

Not Cuckoo’s Nest at any rate, nor the I-Never-

Promised-You-a-Rose-Garden rose garden.

And that Girl, Interrupted? No, it is definitely not

her giant sleepover with hair rollers, gossip

and steaming hot chocolate. For one thing,

hospital tap water isn’t hot enough for cocoa

and unless your roommate, the anorexic

with fruity breath and ironed tee shirts

becomes your best pal, that’s it for the party,

no one else gets in your room. Even in a single,

the checker disturbs you every 15 minutes.

Now, I know that keys play a big role in film:

someone always swipes a set for the night

to go AWOL or wreak havoc. In reality,

“insurance cured,” most want to stay longer

than leave shorter. Going AWOL is more

the impulsive leap through briefly opened doors

than planned absconding at midnight

with a stolen keycard everyone is watching for.

Too bad paranoids still suffer, unable to trust

the good of best intentions. As for having

enough free time for the ward sociopath

to “wrap the catatonics in toilet tissue,”

there are too many groups and too many aides

with a job to do and you are it, so get moving.

Besides, catatonics are not allowed to stay

catatonic, what with medication and better care, 

so very quickly slowly they move too.

 

Vision Therapy: Update

On Tuesday, the day after the big snowstorm in this New England state, I managed to make my appointment with Dr D,  vision therapist-optometrist. I had thought that the problem, which was that I was having trouble reading due to the letters becoming jumbled and dancing around the page again, was my “constant or near constant exotropia” come back to haunt me. After three weeks spent largely in one small room in the hospital, a good part of that time using either glasses without prisms or at one point no glasses at all (because the lens had fallen out and I had no screwdriver to fix them with) I thought I’d “lost it” i.e. everything I’d spent so much time learning in VT.


Dr D did an exhaustive exam, or so it seemed to me sitting in the chair, my eyes getting wearier and wearier (!). However, when she was through, I was surprised to find out that the exotropia was actually quite a bit better, that in terms of my depth perception, I needed nothing more than to restart the exercises and perhaps spend some time looking  at  anaglyph pictures with red/blue glasses again — to reestablish the habit of seeing 3-D. According to Dr D I had all the ability to perceive it that I had had when I left her.

 

So what was the problem? Well, so far as she could determine, my right eye seemed to have become more myopic than before, enough so that I needed a new prescription. She seemed to feel that it was because of this that my vision felt jumbled, especially after reading a little while. Indeed, when she gave me the card to test my near vision, I could see every line quite well, as I usually could, since I have excellent near vision. But I knew that within minutes of reading a page of text, either in a book or more especially on the computer, I would begin to have difficulty (as I am even now as I write this). She felt that the increased medication was likely the culprit, and that if it was to be kept at this level, I should probably have my glasses changed to accommodate to it.


So all’s well that ends well. I left feeling a good deal cheerier than when I went in, knowing that I did not need to begin all over again, but only to do a tune up by myself, and get a new prescription if my meds are not going to be changed any time soon. (I may wait and see about that, since I do want to reduce the Abilify to a “humane” level, rather than keep it so high for good…I did well on 20mg for 18 months; I don’t see why I would need to stay on 35mg permanently just because of one relapse…Surely the increase need only be temporary…)


Tonight, I started “showing my brain” it could perceive the 3-D images that my eyes already see. I looked for my white, marked pencil for pencil push-ups, but couldn’t locate it, nor could I find the Brock string, though I had carefully stored both somewhere. (Lord help me, I am always doing that: packaging important items carefully with labels etc, putting them away for safekeeping, then promptly and completely forgetting where the hell I put them!) So instead, I put on my red-blue glasses and went to the internet site where I knew there were useful anaglyph pictures to get me started. If you happen to have red-blue or red-green glasses, perhaps from a three-D movie or graphic, you might like to check out this particular site, where the shots of Barcelona, and especially Gaudi’s work, are spectacular: http://www.3djournal.com/001/gal_Barcelona_3D.php

 

I was pleased to find that after some initial difficulty, I was soon able to resolve many of the photos into layers of depth, even a couple of pictures that before now I had not been able to see as three dimensional. What is more, upon taking off the glasses and looking around me, the world  changed: suddenly, amazingly, the magic was back…Space was present again, holding things in its embrace, embodying even the flat surfaces of things, so that they now implied the substance that lay behind.

 

What do I mean by that statement, that space embodies flat surfaces so that they imply the substance that lies behind? Well, there is a book behind a flat book cover, no? Without the ability to see 3-D, one would not be able to know, without being told, that something was a book, and not merely a picture. The “bookness” of the book, the substance, the three dimensionality can be seen because of what space allows us to see, the continuity of a surface beyond the visible front. When I had not the same 3-D power of vision that I have now, I did not in fact see this continuity, so that unless I “knew” that a surface was a book, and therefore had the substance of a book behind it, I could only perceive the flat picture/cover presented me. It looked no different to me whether a picture, flat against the shelves, or a book, cover facing outward, and I would not know which it was, if I were not told. Of course, there can be monocular clues, clues like shadows and shading, clues like the oval on the top of, say, a glass or the curvature on the top of a book’s spine, versus the flat line of a picture. All give hints, but barring those freebies, space and depth perception are what tell most people that an object has substance, are what implies continuity beyond what is visible. Without the ability to know objects continue in space beyond what is strictly visible, you do not see the same object that the person with depth perception sees, much as you might believe you do. You can only know what you are supposed to see, say, the book, and then see it. But you do not first see the book, and then know it.

 

For a better example, take that palm plant I used to use as a touchstone for whether or not I could see properly. I knew it was a palm plant, yes, because it had long and multitudinous leaves, a mass of them. Now maybe I would have noticed this anyway, being an amateur botanist all my life, but what I did not do because I did not see them, was try to count the leaves, or find out where they were attached…Was there one stem or several, was it bush-like there, or similar to a tree? Looking never occurred to me, because it was just a jumble of green. I needed to be told what was there, in order to see or even notice it. Without that information, it escaped my vision; I failed to see, I failed to so much as think about it.

 

But that was before, now it is different. Now, and tonight in particular, the magic was back and sudden 3-D-ness made everything suddenly pop. Once again, I am filled with thanks for my original loss of depth perception, simply because in the regaining of it, I experienced, I believe, a sense of beauty that may be unique to those who, like me, have had to learn or relearn depth perception in later life. It is not something I regret in the slightest. If I missed it for some large part of 56 years, it doesn’t matter at all, because I have gained so much  — well, I have no other word for it — magic now that it makes up for every minute when I didn’t have it or know what I lacked. After all, the past is gone, the present is all we have for certain, and the magic is here and now. I’m more grateful for it than I can say.

Schizophrenia: “Divided Minds” and Recovery

The day our book, “DIVIDED MINDS: Twin Sisters and Their Journey Through Schizophrenia” came out, in mid-August 2005, Carolyn/Lynnie, my twin sister, and I had three engagements scheduled, including a radio interview, a TV appearance, and, that evening, our first public  speaking/reading engagement at a local library. Due to advance publicity and widespread interest, it turned out that the venue had had to be changed to accommodate all the people who had called ahead indicating they planned to attend: instead the usual small room at the library, we were to speak in the auditorium at the Town Hall.

 

I made it through the day all right, but by evening, I was beginning to become symptomatic, hearing people unseen whispering over my shoulder and seeing familiar dancing red particles I called the “red strychnines.” Nevertheless, I was determined to make it through the final “gig” of the day in one piece. I was, however, getting more and more nervous, despite taking my evening medications early. Finally, Lynnie suggested I take a tiny chip of Ativan, not enough to make me sleepy but enough to calm my anxiety. I resisted up until the last minute, when, finding the stress unbearable, I agreed to it. She ran to get me some water, and came back with two cold bottles that had been set aside for us all along.

 

Then, we were on. Lynnie had done some speaking before, and seemed to me to be amazingly relaxed in front of the 340 people who overflowed from the first floor onto the balcony above. When she introduced me to read a section of a chapter I had rehearsed over and over until I could do so with the proper ease and feeling, I got up, trembling, and walked to the podium, wondering if my voice would tremble also.

 

In the book’s margins I had everything written out, from my introduction to the passage to instructions to myself on where to slow down, where to raise my voice, where to pause and so forth. I raised my head and looked at the audience, then looked down at the text and taking a breath, began.

 

I was surprised to hear my voice sound as strong as it did and wondered how long I could keep it up, knowing how fatigue and awareness of the audience could make it weaken and go tight on me. Indeed, after a particular spot in the book brought painful laughter from some in the audience, I could barely speak. I had coached myself for this eventuality: Breathe, I told myself silently. Breathe through it, keep reading but breathe slowly and calmly as you read and your voice will relax and stay loose. To my intense surprise and relief, it worked. I made it through the entire segment. “Thank you,” I murmured, indicating that I was through,” though it was obvious from the text that the piece had come to its natural end.

 

The audience burst into applause. People stood up, all of the audience stood and clapped. I didn’t know what to do. They were applauding me? What had I done to deserve this? Even Lynnie was on her feet and smiling. She nodded at me, telling me it was okay. Her eyes seemed to sparkle, as if they were full of tears. My own eyes were wet and I was too embarrassed to wipe them…

 

Lynnie then gave a speech of her own, a wonderful speech, ending with her asking me to stand up. and this too received a standing ovation. We looked at one another.. Who’da thunk? our eyes asked in pleased but puzzled amazement. Then it was over. But not quite. There was still a long line of well wishers with books to be signed and many people who wanted to talk to us. I was so tired that I let Lynnie field most questions, and   hid behind her or busied myself signing and pretending to pay attention to her, so I didn’t have to talk myself. In truth, I was exhausted, and though elated the evening had gone so well, on the verge of tears from sheer relief…

 

When we left, there were only a few people remaining in the hall. The library employee who had given us the opportunity to speak, told us it was one of the best attended events he had ever scheduled. We thanked him or Lynnie and Sal, her new boyfriend, did, I mostly lagged behind, and  followed  as if in a trance. Then we headed out into the warmth of the August night.

 

After the success of that night, the book tour, and later our paid (Lynnie was paid, I was not, as she had to take time off from her practice to do so) engagements became easier and easier, especially after we worked up speeches of our own and developed a rhythm and interaction with one another that seemed to work well. But it was wearying, and I wasn’t always taking my medication as I was supposed to. I still hated Zyprexa, which we had cut to 2.5mg plus Haldol and Geodon, and so I skimped on  it as often as I could, as well as the deadening Haldol. Geodon was the only antipsychotic I was on that seemed to have no objectionable side effects, but it clearly was not effective by itself. So even as we made our way out to Tucson, AZ I was skating on the edge.

 

2006, fall. I had made it 18 months since my last hospitalization but fatigue and exhaustion and it may be (I do not now recall for certain) not taking all my medications as prescribed conspired to allow in the same hallucinations that had such devastating consequences back in 2003/4. I was to set my whole body on fire, they told me, not to kill myself but to scar myself so badly that all would shun me, leave me alone, which was what I deserved, and what they ought to do in order to be safe. Because I could not promise not to act on these commands, I was hospitalized not far from where Lynnie lived at the time. I spent a month there, a very difficult and painful disruption in my life about which I have written earlier (see the entry about “trust”).

 

I was hospitalized it seemed every five months after that, until 2008, when I managed another 18 months. But life in between those stays was improving. Although we still did occasional speaking “gigs” we slowed down on those a great deal, so my time was more my own. I had made a papier mache llama once in 2004 when I was hypomanic, and it had taken all year to paint it, after I’d come home from the hospital no longer high. But the fun of it had stuck with me and in 2007 I made a turtle, a huge tortoise and took a couple of months painting it. In between I created some small objects. Then over December 2007 and January 2008 I built and painted my first large human, the Decorated Betsy. I was off and running, with Dr John Jumoke coming in April, May, and June of 2008 and the Shiny Child Ermentrude started in October of 2008 and finished in early January 2009.

 

Also in this period of time — between 2005-2009 — I put together my first manuscript of poems written over a 20 year period about living with schizophrenia, and another manusript of more recent poems, not about schizophrenia, and sent the first one off to the press which is publishing it, in their series on chronic illness. Once it comes out, probably in March, I will be free to finish work on the second. I will send that one out  and hope it too gets published as I prefer those poems to the ones in the first, though I have had rave reviews on that one, at least from the people who have seen it so far. I, of course, as the author, can only view it through the jaundiced lens of self-criticism and self-hatred…

 

Plus ça change, plus la meme chose. (and some things never change…)For all the seeming success I have had in these past three years of recovery, I still struggle with abysmal lack of self-regard, and chronic paranoia. If and when I find myself a new therapist (I must soon leave Dr O, as the travel time 1.5 hours there and 1 hour home  has become too much for me, and too it may be that she will no longer be continuing her practice, though I do not know that for certain…But in this economy, I can no longer afford the ride there as well as her fee. And I think too it is time to move on…both for her sake as for mine.) ..if and when I find a new therapist, it is those two things, self-esteem and the very right to have it, and paranoia — how to either end it, or live with it, are my two major goals I want to deal with, head on.

 

But then, maybe that’s all we have ever done, Dr O and I, dwelt forever on my lack of self-esteem and my paranoia, getting nowhere for all that. Perhaps she had the wrong tactics, the wrong methods, or else perhaps I am hopelessly mired in  my own worthlessness and suspiciousness — for lack of a better word, though paranoia means so much more than that…

 

In any event, I have tried here to describe in one entry a little of what has gone on for me since the book came out, since the beginning of my recovery. But my recovery truly began when I’d started Xyrem some months before. That is the drug that caused Lynnie to exclaim upon seeing me, two months after I’d started it, “Pammy, you’ve changed. You look wonderful, you’re back.” Xyrem, book, papier mache, poetry…all together gave me parts of a life that became somehow worth living, and it is worth living, even if at times of dark forgetting, as in February, I lose track of the one fact I need most to remember.

Schizophrenia: Recovery and the Reality Test

There have been many stages to my recovery since my first hospitalization at age 18 and really since age 31 when I was formally diagnosed with schizophrenia. While there were countless hospital stays, sometimes 6 in a year, or  2 three-month stays practically back to back, I managed to climb back up to a place where I could go back to the world and function well enough to write poetry, all that I asked of life. With better drugs being available and also better treatment of the mentally ill and improving attitudes towards us, I experienced what you might call a breakthrough each decade. It never quite made me whole or happy, but each mini-recovery lifted me a little higher out of the muck of depression, despair and anhedonia (loss of the ability to feel pleasure)– for a time at least. And each breakthrough gave me lasting tools to deal just a bit better with the next onslaught. I can’t say I learned very well or very quickly, and insight gained with great difficulty abandoned me time and again at the very moments I most needed it. But I became able to write about these episodes after the fact and to learn from them later. At the very least, I felt I could teach others from what I was able to put into the written word.

 

One of the hardest to learn but most useful tool in my recovery tool box even to this day is what I call: The Reality Test.  It sounds so very simple, consisting of the need to challenge a delusion or hallucination by asking the people involved a question pertaining to the matter, such as, Did you say such and such? Or Did xyz actually happen?or Did you hear what I heard? The key thing is that after you ask the question you must listen to the answer and trust that the person’s answer is the truth. Often I would do everything except for the last part, where I balked, and simply accused allof lying to me unless the other person corroborated my paranoid assumptions.

 

 

Until I learned it, and could do it fully, including the trust the truth part, I had no idea that I was living in something other than consensual reality. Even though people told me again and again that I was paranoid and delusional, I figured they were just using such words against me, to hurt me, insult me because they did not like me, because they had hated me from the minute we met. But once one especially frightening delusion dissolved in the light of reality, it became clear to me how much time I had been spending in a fictional world and how often I needed to use that reality test, which is to say, all the time.

 

 

Lack of insight. That was the fundamental difficulty. I did not know that I had  a problem. The reality test gave me insight, but it often took me a month long hospitalization to understand how to use it and why. Some people with schizophrenia are fortunate enough never to lack insight; others like me seem to have it, then lose it; have it, then lose it.  This is as true for me in 2009 as it was in 1984. But we all know some who remain unaware of being ill all their lives. If there were a magic wand I could wave to change this, I would tell you where to find it. I have only found insight in the accident of using it. Perhaps it is different for each individual. If you or your loved one cannot understand that there is a problem, do not force it, it will not do any good: you cannot see colors if  your eyes have no cones. What you can do is find a way to have them agree to take medication anyway — as a condition of something else more desirable. Knowing that I stayed out of the hospital for 18 months while on all the meds, I once decided to force myself to take them and started doing so in the hospital where I had been refusing them. I wrote up a contract, signed it along with the charge nurse, and gave it to the staff. It said that if I refused any medication all my writing materials would be confiscated for 24 hours. Since I wrote up to 15 pages in my notebook every day, it was the only threat I knew that had teeth. With that contract in place, the thought of not being able to write so terrified me that I did not refuse medication even once.

 

          Of course, there has to be some basic alliance with a person for such a contract. It seems to me to be cruel to arbitrarily impose such a thing without consent, though I tacitly agree that where medication is a matter of life and death, or jail versus staying at home, or in other critical circumstances sometimes this can be necessary. I understand that some people with schizophrenia will be horrified by this suggestion, but I, have been around, done things that I wish I had not done, and know this should have been done to me a lot earlier for my own good. In fact, it was. I have been under court order, in the hospital, to take medications I hated and even to accept ECT. But here in Connecticut we have no mandated out-patient treatment law, and so no one could force me to take medication once I was discharged, to my great detriment. So in and out of the hospital I bounced, on and off medications — whether Thorazine, Prolixin, Clozaril or, worst and best of all, Zyprexa, I would never stick to any proposed regimen –about which I was so ambivalent. They should have taken me off Zyprexa and put me on Haldol once and for all. But I loved Zyprexa as much as I hated it, and could never decide to simply give up on it altogether. 

 

Now I am on 17mg of Abilify twice a day plus a full dose of Geodon. Two antipsychotics. Two anti convulsants. An antidepressant. A stimulant for narcolepsy. A beta blocker for side effects, specificially Geodon induced akathisia, and two antibiotics for Lyme disease. But I take them, supervised by a morning and evening visiting nurse and wow, what a transformation. They are not like Zyprexa, no, my world is not suddenly Imax, or HD compared to the ordinary. I have difficulty reading, for one thing, though I am able to do so and enjoy it for short periods. But I used to struggle to write and found it hard to get over the initial hump that blocked my way.

 

Now, though, now I write like wild fire. I write and write — pages a day, in my journal, in email, even here, in my blog. I write more often than I ever did and have to control the urge to write here more often than once a day. I even have to curtail the desire to write every day, lest I not do anything else! But it is a wonderful feeling to be so freed up, to have words surge like an electro-chemical river from my brain down through my fingers and pour out into the world!

 

So I see how medication can have active benefits now, not just side effects. It helps me want to stay on them, insight or no. It is what I wish everyone with this illness could see and understand: that their lives could be better, that they could be less confused and frightened, less tormented by voices and visions or terrifying intrusive thoughts that others label delusional, that the world could offer some happiness with other people in it, if they would but surrender a tiny bit of what? freedom to be crazy? to suffer? and agree to swallow medicine. Then, I must add, it behooves the doctor, knowing this momentous decision has not been taken lightly, to work to find the least uncomfortable most effective regimen, not simply slap on some all-purpose drug or long-acting injection with no regard to the individual taking it.

 

There has to be an alliance. Let me say this again: there has to be an alliance between the doctor and the patient, and the alliance must be a two-way street. If the doctor wants to trust the patient to take the meds, the patient must be able to trust that the doctor is prescribing the proper medication and is willing to listen to him or her if it proves to be not quite right. If the patient cannot trust the doctor in this, how can he or she learn to trust enough to “get” rather than forget the reality test? 

Vision Therapy and Schizoaffective Disorder

I combined two subjects in my heading –and they are related — in order to “recapture” as many readers who might come back looking for an entry after three weeks of nothing…

 

I’ve been in the hospital. Yes, a relapse of schizoaffective disorder, due, I think, to stress, poor sleep, worse eating and terrible time management,  in tandem with a flare-up of the underlying infection  of Lyme disease (for which I’d had a positive Western Blot test as late as 2006, five years into treatment).

 

I was in fact overwhelmed, sad, depressed, tired and sick of it all. I wanted to write and do my sculpture and it seemed as if everyone wanted many and more pieces of me and my time. Despite all the successes of the past year, I felt hopeless to change things On Effexor, after a long two and a half weeks, my spirits rose and my hopelessness diminished. I was able to unblinder myself, removing the brimmed hat I wore day and night, and enter the world again (in terms of mood, the affective part of the disorder).

 

In terms of the schizophrenia aspects of the disorder,  this hospitalization was brutal. I heard my name, my full name, being called 100 times an hour, on any given day. When people spoke to one another within my view, I could see (and heard it) that every word  spoken between them was my name, and nothing more. The entire ward had nothing better to do than to persecute me by saying, yelling, whispering my name.

 

Then one day something that really scared me, they whispered, “I’m choking myself. I’m choking myself. Pam, start choking yourself. Start choking yourself.” Always, almost always before this time, when faced with such “command hullucinations” I blindly obeyed the directives of the “dictator-voice,” too afraid to do otherwise. This time, rather than obey and do as he or they insisted, I ran out of my room. I looked up and down the hallway for anyone — anyone! — a mental health worker, a nurse, even the ward secretary would do.  No one .

 

What to do? What to do? I raced back to my room, stood  just inside the doorway. No, I could not stay, not with this voice assaulting my brain. I had to find help. Somehow. Then I heard someone coming down the hall, briefly stopping at every room to check on its occupant: the mental health worker “on the floor” which is the say, the one who was assigned to do fifteen minute checks that evening. Stacy, with the long dreads, was  just the person I needed.

 

 

“Stacy,” I whispered urgently when she came nearer. “Stacy, I need to tell you something.”

 

“What is it, Pam?” she smiled.

 

“They’re telling me to start choking myself.”

 

“Who is?”

 

“They are, the people who talk to me, the voices if you need to call them that.”

 

She frowned. “You aren’t going to act on that, are you. Now, come. Let’s find your nurse and see what he can do for you.” Then she took my hand and led me up the hallway to the medication room where Paul was doling out nighttime pills too early for my taste. “Paul, I think tonight, Pam needs her antipsychotics early. What does she have?”

 

He told her what I was taking, and they murmured together a little. I assumed they were discussing what I’d just told Stacy. After I’d taken the pills, Stacy again took me by the hand and walked me down the hallway to my room.

 

“You gonna be all right now?” she asked.

 

I nodded, dubious that the meds would do the trick, but hopeful in any event. I knew now that I could in fact ask for help and be given it, that I did not have to obey the voices not even when they demanded action.

 

But that was only one of many, many incidents. I won’t bother to recount them all, or even just one other, not right now. All I want to say is that the voices never did let up until the final weekend, due to stress caused by a very disruptive patient. It was only the weekend before the day I was discharged, when she’d been booted out, that the ward was tranquil enough for the voices to diminish, and then by Monday begin to cease. Yet even at the very same time, another problem reared its head…

 

This is chronic neuro-Lyme: plots abounding, exaggerated startle, acute dyslexia, increased paranoia and rampaging ideas of reference…I had them and worse in 2000 during the massive psychotic break at Y2K and I had all or most during this hospitalization in a diminished form, when the antibiotics were changed and failed to protect me from a recrudescing infection.

 

Now, why or how does Vision Therapy tie into this? It is related because while in the hospital, that closed-in space with blinds on the windows so the view is largely obscured, I lost my ability to see 3-D, to perceive depth and space. I even lost my ability to read or untangle letters on the page or properly read the words on a computer screen. I noticed this one day when I looked to see if the pen was clearly above the paper, and found that I could not easily say that it was, that I was deducing it from the overlap and the shadows. Occasionally, depth perception would flicker on then off, and it was delightful, but most often I found it was off, and decided to let it be. I knew how to restore it, that it could be restored, and that Dr D would help me if I needed help. So I figured, the worst would be I’d have to re-train my eyes, but the best part of that would be the thrill of re-entering the beauty of the borderline between 2D and 3D.

 

In the follwoing posts I plan to describe the Vision Therapy sessions that help me regain my depth perception, and also in others discuss aspects of schizoaffective disorder, the schizophrenia aspects as well as what I know about depression.

 

Stay tuned…

Prison Abuse: A letter etc.

Edited from a letter to a friend: 


I sent the following message to the White House website — the Office of Public Liaison. It is the beginning of a snail mail campaign (insofar as I am able), geared directly at President Obama asking for a prison and “juvy” reform agenda. So far as I can tell, he has nothing  of the sort at this point and we need one.

 

This is the very least I can do as I have decided that while I write this blog and books on behalf of my own issues around schizophrenia and mental illness, my political writings and action will be on behalf of a prisoner I am acquainted with who is sentenced to “life without hope of parole.” (I ask you is there a more fiendish mode of inducing despair, desolation and desperation in a soul than such a sentence?)



But my question  submitted on the form available was as follows: “Is there any Obama agenda for humanizing juvenile detention centers and for prison reform?  Abu Ghraib, Guantanamo and other foreign-soil prison abuses  did not come out of nowhere. Abuse and yes, torture of prisoners in “juvy” and US prisons are practices both brutal and common that serve no purpose except to create more violent convicts. Most will one day be released – to no one’s benefit, least of all  society’s. NO ONE CARES about them. They have been forgotten, lost, abandoned. PLEASE help.”



 

I was limited to 500 words so this had to be very carefully crafted and I wanted to get in some of the most important points. I dunno now about the comment about Abu Ghraib, but it seemed to me to be the important name to cite — an accurate reference for all that, according to my source– to draw attention then to the equation with US maximum/moderate  security prisons.

 

Anyhow, I don’t expect much of an answer (though the website implies the promise of something along those lines) but it was mostly to introduce the subject, into which I plan to go in greater detail in later letters.  


 


Towards the same ends, I am reading Christian Parenti’s 1999 book on US prisons and the “correctional system” in general, Lockdown America. I have had the book for years but have never been able to read it, though I wanted to. Now, suddenly, due to interest in this prisoner’s plight, I am slowly plowing through it. I admit it is difficult to get myself to sit down and read, but I really want to and so I persist.

 

My eyes, I think, continue to rebel. I have found that recently I have had to continually wipe my glasses clean in order to see better, or felt that I had to, without real relief. I am not sure what is going on, though. I believe I can still see 3-D okay. I just feel as if there is a scrim of something, a veil between me and the world…But it is more that than anything, and my usual narcoleptic sleepiness that prevents me from reading. Certainly not lack of interest and dedication. Still it remains very frustrating to me that getting through an entire book takes such a long time while writing is so easy (This is due in large part to my antipsychotic medication, Abilify, which I strongly believe facilitates putting words on paper, if insuring nothing at all about the quality of their ordering).

 

————————————————————————

 


Anyhow, truth to tell? The times are grave…I am attempting to work on a poem about Obama as Messiah and the concomitant end of the world. At the same time, I want to move to higher ground as I wrote in the earlier post, as soon as I get a spot in some other complex out of the Valley. That, however, could take years, I am told, as I am low on the waiting list, being disabled not a senior (I’m 56 and need to be 62 to be so classified, though the cut-off may be 65 by now)…

 

I do not know if the six years till then will be soon enough, and too, why continue to live if there will be social chaos and a catastrophic flood, famine and widespread panic, the predictable breakdown in all civil order…? I’d rather die, and by my own hand than survive to have to worry about being murdered by –

Argh, you don’t need to hear this, I think. But people are already  filling my head if not the halls with screaming and gnashing of teeth. I fear I may need to barricade the door… 

Up All Night…

 I was up all last night and most of the night before, checking out various places around the state and their relative, which is to say their absolute elevations above sea level and comparing them, hoping to find a suitable place to relocate. I need to move soon — within the next year or so — as the Antarctic ice cap could slide off at any time, not to mention the possibility of Greenland producing such a profusion of freshwater that sea levels would rise precipitously and catastrophically…

 

What am I talking about? Global warming and one of the most predictable consequences of climate change…. The scenario, as I foresee it, is this (and keep in mind that I am being utterly selfish, thinking of no one but myself here, no one but me and my own small circle of family and friends…): I live in the Connecticut Valley, inland it is true, but at sea level with nothing between us, nothing literally between my building  and the ocean  but the valley floor. If and when the ocean level rises there is nothing that will stop the water from simply flowing right on up the valley. It will not even need to climb a slope as, according to Google Earth, this building is literally only 10 meters above sea level. Even if there is some ground higher than that in between, the water will simply find a route around the high points, making islands of it, and continue flooding wherever else it reaches.

 

Why am I making such a big deal of this? After all, I’m 56, I’m practically elderly. I should think of the younger ones who…But I admit it, my biggest fear in the world is drowning, and I cannot / will not sit around and wait for that to happen, no, I must do something to prevent such a fate now, while I still can. According to Google Earth, even my twin sister is on relatively high ground  – 600 feet – compared to me, even though she is closer to the shore and further south. Nevertheless, she has not put out an invitation, even when I pointed out the disparities of  our elevations. My younger sister, too, resides in the Valley, but she is farther north, in Massachusetts, and at 66 feet is somewhat higher in elevation. However, just a couple of miles out of town, the area not far from her is 300 meters above sea level, so she can get out of Dodge easily when the floods come. I wish she  would move so she wouldn’t be in harm’s way at all. I simply know that she will not listen to me if I bring it up so it is useless to try to get her to prepare. In the meantime, since I cannot count on my twin or any family member or friend to take me in, I must try to find an apartment on my own. I must  get myself to a new town — which one?– somewhere in the northwest hills, where the elevations are the highest and pray that the worst of the worst scenarios does not happen. 

 

Yet I know it will, and I cannot bear to think of the hundreds of millions, possible a billion people who live along the world’s coastlines who will also be in danger when the flooding starts. My concerns are neither more nor less serious than any of theirs, only more conscious. It could be better not to be so aware of what is to come: ignorance of the inevitable  must surely be less painful than the agony of knowing a devastating future without any ability to change it.

 

When I contemplate the certainty of mass panic, the evacuation and stampede inland, the fruitlessness of it all, my heart pounds with a horrible anxiety, being unable to bear thinking about so many people suffering…It is then that I wish to be dead myself, wish to have it all be over. I  myself have nothing to offer those suffering millions upon millions, though god knows I would if I could. If I myself cannot save them or help them, I cannot bear to witness the end of the world either. No, I would rather not be there for it. If a billion are going to die, then let me die before they do! I do not want to be left behind in such a world–

 

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Someone ought to do a film on American prisons and the making of a “violent criminal”– from his/her start in the State system of juvenile care (foster, psychiatric and otherwise) to juvy to the vicious cycle of imprisonment and abuse in the so-called “correctional system” until institutionalization and/or brutal three strikes laws make it permanent…Those who somehow think that most violent convicts freely choose to become violent are fooling themselves or are willfully ignorant: the prison system creates violent criminals, period.

 

 Abu Ghraib did not arise de novo, out of some new bizarre impulse from “rogue military elements”. No, we exported U.S. prison guards to Iraq who knew the tricks of the trade because they already used them in American prisons. Yes, the hoods, the dog leashes, the humiliating nakedness and don’t forget the torture — all are regularly practiced, with impunity, in American prisons. Yes, even President Barack Obama still exempts as legal and reasonable, the use of torture in prisons and during the punishment of prisoners.  

 

In fact, the Geneva conventions read as follows: Article 1

 

For the purposes of this Convention, torture means any act by which severe pain or suffering, whether physical or mental, is intentionally inflicted on a person for such purposes as obtaining from him or a third person information or a confession, punishing him for an act he or a third person has committed or is suspected of having committed, or intimidating or coercing him or a third person, or for any reason based on discrimination of any kind, when such pain or suffering is inflicted by or at the instigation of or with the consent or acquiescence of a public official or other person acting in an official capacity. It does not include pain or suffering arising only from, inherent in or incidental to lawful sanctions.

 

So even the Geneva Conventions agrees that while torture consists of inflicting severe pain on a person by official instigation or consent,  it seems to be allowed in the case of prisoners….EXCUSE ME? Prison guards can beat a manacled naked prisoner senseless and leave him in the “hole” for weeks, even months, no one saying a word about it, and it is fine with President Obama and fine with the Geneva Conventions? Well, I don’t think it is FINE at all. Especially not when the so-called resistant prisoner happens to have mental illness and is in “seg” because of it. Especially not when the prisoner is an 18 year old who just graduated from juvy, where he was sent after having spent years being shunted from one abusive “home” to another, molested in one and raped in another…and where he was not, beaten until he ran away and was sent to reform school. Now, in the Big House for armed robbery, is it any wonder he is both scared out of his wits and violent?

 

Pardon Bush? No Way…

I watched the inauguration the other day and wept. I wept for joy that we, the American people, have finally elected an African American, and a Democrat committed to Democratic values, to the presidency of this gravely wounded country. And I wept in grief that we have allowed ourselves to have been so wounded by the very men who were elected to serve us as leaders.

After the long dark night of the past 8 years comes the start of a new era, one I hope will be characterized by more truth and humanity than so-called “compassionate conservatism.” That of course was only window dressing to conceal Bush’s robbing of the national coffers on behalf of his cronies and his wholesale, deliberate abrogation of our essential rights, both democratic and human. Contrary to what Mr. Cheney asserted in his final interview, the administration did torture, did wage illegal wars and did despoil the air, land and oceans for corporate gain. “On-message” lies repeated over and over do not make the opposite true, however well-honed the practice.

From the secret energy cabal assembled by Cheney to our shameful lack of preparation for 9/11  (but once and for all, just how did the WTC towers and a third building at the site come down in a manner virtually identical to controlled implosions?), from the lies that permitted the vote for the Iraq war to the gutting or disempowering of so many regulatory agencies, OSHA to EPA — the administration now past is guilty of what could possibly be dismissed as political misdeeds. But to write off Bush’s deliberate breaking the FISA law and his decision to ignore the Geneva Convention and rewrite laws to permit torture is to collude with him and essentially to agree that he was right to do what he did.

No, I do not believe we can or should just “get on with things,” or let Bush get away with scot-free. I do not mean that we need to get revenge, though my angry heart harbors, I admit, some impulse towards schadenfreud. I think there is a difference between political misdeeds and crimes for which even presidents ought to be held accountable. And I believe that if we ourselves do not hold Bush to account for such issues as torture, the rest of the world would be justified in charging him with crimes against humanity.

I thank god that Bush cannot in fact issue himself or Cheney or anyone else a “blanket pardon” — not because he wouldn’t wish to, but simply because no one can be pardoned for a crime with which he has not been charged. It is this fact, that we did not impeach Bush while in office, that will permit charges to be brought against him in the future. I know that people have a tendency to want to move on, to forget (if not forgive) a past they cannot change, because it is easier than dealing with the messiness and difficulty involved in bringing someone like a former president to trial. But I believe it must and should be done. Too many have been grievously harmed and too many continue to suffer the consequences of Bush’s crimes. We do not have the right simply to  “forget” them, victims or perpetrators, simply because it is easier on our stomachs. 

Delusions and Paranoia: past experiences

During the second part of what I call my Y2K Meltdown, when I was hospitalized for 3 months, first in central and then in southern Connecticut, I was extremely — but what I call serially– paranoid. What I mean by this is that plots occurred to me one after another seemingly without end. A new conspiracy would “appear” out of nowhere, as of course paranoid plots tend to, generated as they are by that two step process, described in the “Paranoia and Hallucination” entry. It would “do its thing” as they say, run its course, wreak its own havoc, then having done so, pop or be defused, and disappear. But almost immediately and, without my having any sense that this was happening or had any pattern, in its place another conspiracy would arise to take its place.

 

An example: at one point during that same hospital stay, having smelled what I was certain was marijuana coming from the art supplies room, I became convinced that the staff had been infiltrated by drug dealers selling weed and stronger drugs to patients. I’d mentioned the smell — no doubt some innocuous meaningless odor, if it existed at all — to a male nurse, and the look he gave me convinced me that he was involved. As a result, I realized that my knowledge of the presence of drugs on the unit made me dangerous to him and the other dealers. I felt frightened that he might retaliate, threaten me, or worse, hurt me when no one was around or could help me or know he was responsible.

Terrified enough to start talking, I told the doctor, and I called my sister and begged her to come in and sign me out. Please take me anywhere else, I begged. I would agree to any other hospital only get me out of there where I was in mortal danger. It was, I knew, after visiting hours, indeed it was after bedtime, but she had to come in and get me, now, or I might not survive the night.

 

Incredibly, she actually came in, if only to make sure that the staff was aware of my extreme distress. I knew only that she came to check out the drug situation and was devastated when she left without taking me home with her, though by then she had managed to “talk me down” some, convince me that I was in less danger than I believed, and that at least some of the staff were on my side and would be watching out for me all night.

 

Somehow, her words got through to me, and by the next day, the matter of the drug  conspiracy was resolved, though I cannot recall exactly how.

 

All I know is that as the urgency of that situation ebbed, I became aware that a new patient had arrived on the unit. Cally wore a raglan-sleeved sweater made of what I immediately apprehended was a washable wool yarn called “Candide.” Now, I knew only one other person aside from myself who knitted sweaters like that made of Candide yarn and she was the woman who had taught me to do so. “Lisa” not only knitted many such a sweater but did so for her long lost daughter, “Cally,” who had been given away for adoption many years before. The fact that “Cally” lived in North Dakota, last I knew, was of no importance to me. What seemed of paramount, vital and decisive importance was 1) the Candide wool and raglan sleeves, and 2) the fact that Cally appeared to have Lisa’s ballet-slender body type. These two coincidences in fact absolutely clinched the matter. Cally was “Cally,” wasn’t she?

 

These equivalences might not have been so critical to me, except that, it suddenly seemed that Lisa had died. She had committed suicide, so the message was communicated to me, and I had now to inform Cally of the fact that I’d known her mother way back when. I felt it was incumbent upon me to tell her what she had been like, that was the mission I’d been given. But  first I needed to ascertain beyond a shadow of a doubt that this Cally was indeed Lisa-my-former-friend’s daughter “Cally”…

 

If this was not a true paranoia that instantly arose following the death of the drug dealing plot, it was a delusion coupled with the felt urgency to act on what I was certain I knew (not so different from the marijuana delusion after all). And it was only one of a long string of plots and serial delusions that followed one upon another almost without a break that winter and spring. Just as I described in my entry of the other day, not once in the midst of any of these conspiracies or delusions was I cognizant of what was going on or able to step back and analyze the situation with any objectivity. At that time, I did not even have the tools I have now to dissect an incident after the fact: I was at the utter mercy of my brain illness, without any insight whatsoever. Now, at least, I can step back after the experience and say, Wow, I must have been really paranoid to think such a thing, or That was a hallucination after all…My goal, and a real triumph would be to recognize these things in medias res, that is, right while they are happening, but so far that does not seem to be possible.

 

Paranoia and Hallucination

Argh… An incident of paranoia and, hallucination unrecognized by any of us, including me, caused certain people close to me unnecessary distress this week.  I won’t go into the details of that particular incident, except to say that I had absolutely no appreciation for the fact that I was both paranoid and under the influence of false perceptions and so took what I hallucinated as solid reality, with predictable consequences. Since I felt attacked and “heard” corroborating evidence, when I accused the responsible parties, as I felt certain they were, you can imagine how people reacted…Anyhow, I don’t really know how to make things right now, since the accusations themselves seems to reveal a fundamental lack of trust, however paranoid and generated out of the whole cloth that is my imagination going full tilt…I don’t imagine it would  help anyone much to say that this has happened many many times before, and that I have accused so many people of so many outlandish things that it embarrasses me even in the remembering…Nor that some, no, most of the accusations have had utterly NO basis in fact other than the predisposition of my brain at that precise instant in time. They didn’t even reflect any longstanding attitude, so much as a temporary, very fleeting feeling that burst out as full-blown paranoia-of-the-moment.

 

Be that as it may, instead of dissecting this particular incident, I want to discuss paranoia of the rather prosaic sort that afflicts me these days, rather than the grandiose and global kind — involving the usual suspects like the CIA plus certain shadowy figures known as The Five People — which used to. These days, paranoia — which I’ve been taught to recognize and deal with by my psychiatrist, though success at either task remains elusive as best — reveals itself most often at the grocery store or the post office or the lobby of my “elderly-disabled” apartment complex. Or it might pop up in my suddenly suspecting  theft by someone near and dear, or accusations of malfeasance or betrayal by someone who would have no possible reason or motive for such an act, if an act of that sort were even in the realm of being contemplated. But usually the accusation is so outrageous as to be laughable if it weren’t so insulting or potentially dangerous to reputation or livelihood.

 

What happens in general is something like this: (and Dr O has broken it down for me, knowing the neurology of paranoia) my brain generates a feeling, that is the amygdala spontaneously, chemically, spurts out neurotransmitters of some sort that spell “fear” or “threat” coupled with a sense of absolute certainty. I don’t know if there has to be a trigger for this amygdala burst or not, but it seems to me that stress does induce it more often than calm does, and that certain stresses bring it on more often than others. But that is not to say that I can ever predict when or if my amygdala will produce an outburst at any given time; it is definitely unpredictable to the max! So imagine that I am, say, visiting someone in the hospital with another friend, and in that stressful situation — crowded hospital, stress of strange place and sick friend and not knowing what to do — my amygdala pours out the fear neurotransmitter. I’m suddenly on alert and feeling threatened. Someone is attacking me, my brain decides, and he or she is right there in the room with me! In fact, I just heard them both conspire against me, the sick friend and the well friend visiting him…They are both in on it and against me! I hate them both, they got me here on false pretenses and now are plotting against me, they want to hurt me, to do something to me, they…And so it goes.

 

Anyhow, after the primary flood of “threat” feeling (“the feeling is primary” and that feeling is almost always fear in some form or another) the brain’s longer pathway — as I understand it — kicks in and generates an explanation, a storyline to go along with the “threat feeling.” The important thing to know is that the storyline need not make any sense whatsoever. The brain doesn’t give a damn whether there is any evidence outside of it to explain the threat feeling, because the threat feeling is already inside and felt…So anything can explain it, literally anything can seem or feel reasonable, and does. So wherever the mind goes, or tends to go at that moment, will be the form of the storyline that explains the threat-feeling. If one’s brain travels along the line of (I should only be so reasonable) “why do I feel so threatened?  Did they just say something bad about me? Maybe I’d better ASK them! then one is in good shape, because at least then one can check out what is going on, and short circuit any tendency to mistake false perception for reality. But for me, while I do not, often, these days go so far as to opine that cosmic forces are behind my threat-feeling, I do find other less than reasonable sources than reality to explain it: voila paranoia. 

 

One example, when I am in the grocery store, particularly when alone, I almost always hear and as a result know that I am being followed, and instructed as to what I can and cannot buy. I generally race through the store in an effort to get out, and get away from my pursuers,  or if I do not, suffer from dreadful fear of imminent assault or at least dire consequences. At a minimum, in the best of times, I know that someone is following me and keeping track of what I put in my cart, and will be transmitting the “evidence” to a central authority, which will lead to later consequences that I will regret (which my mind spins into longer more detailed scenarios that change each time I am in the store but which vanish as soon as I am safely back in the car or walking down the hill a distance away…)

 

So that is both an explanation of how paranoia arises — from Dr O’s mantra, “the feeling is primary” , meaning the fear that is initially and instantly generated from that burst of neurotransmitters or neuroelectricity to the brain’s subsequent confabulation of a narrative, an explanation for that all-compassing feeling of threat and the certainty that the threat is real. And I hope I have given some examples of paranoia, specific examples, where the situation stimulates the content without the two being necessarily significant or significantly related. For example, in the instance of the two friends at the hospital, it is the fear and the feeling of threat and certainty that provides the stimulus for the paranoia, rather than any underlying distrust of the friends. The friends are simply the carriers of the fear and the certainty of the reality of the threat, which would have been borne by almost anyone stepping into the picture at that time…

Papier Mache Artwork

I thought I got her eyes down particularly well...
I thought I got her eyes down particularly well...

Child SculptureIguess I don’t have to say too much about these photos since they pretty much say it all. The Child is papier mache painted with metallic acrylic paints. I made her clothes out of poster paper and paper toweling and her hair from tissue paper, the rest of her skin is mostly a layer of  heavy duty newsprint or packing paper.

 

We are having an art show in my building in March so I am trying to finish a few projects in order to be ready for it. Alas, the Child is taking up so much time that I dunno that I will have finished much else besides by March…since I needs must also review the galleys of my book of poems and write several articles and perform any number of other necesary duties. Here are two other small sculptures I have made that I could add to the show:

 

 

Crazy Fruit Bowl with Mini-Melon
Crazy Fruit Bowl with Mini-Melon

MuuMuu Mama

Vision Therapy, Stereopsis and Seeing At Night

I gave up driving at night many years ago — I simply could not see properly, and it seemed to me that I often saw things that were not there, or mistook vague shadows for the wrong objects, which was unnerving at best and dangerous in more than one instance. As time passed, I simply designed my life around this lack of night vision and planned to be in before sunset unless I had someone else do the driving. It never occurred to me to ask a doctor what might be wrong with my eyes. Nor did any doctor ever inquire as to why I could not drive at night, even when I said as much…It seemed to be simply accepted and acceptable to all, that I, starting at age 35 or so, should be unable to see well enough to drive when it was dark. Perhaps because I was already disabled and unable to work this seemed relatively unimportant to them, perhaps because I was a psychiatric patient it seemed to them somehow “reasonable” or understandable…Or perhaps because I myself showed no particular distress, only acceptance. But this was later not the case, and yet still the MD eye doctors remained aloof and uninterested, dismissive, as indeed my ophthalmologist largely was about my double vision when he couldn’t solve it immediately. It was only when I spoke to my optometrist friend, L, that I felt taken seriously. Not only did she immediately tell me to come see her in the office, that we would get to the bottom of the problem, but once we did, she put prisms in my glasses then encouraged me to see Dr D for vision therapy, knowing how important the chance of regaining stereo vision was to me.

 

Be that as it may, as to my lack of night vision I gave up a great deal because of it. I used to be a folkdancer and for many years it was a passion of mine, but when I grew unable to drive at night I had to give it up. I stopped visiting anyone after dark if I couldn’t walk there and back and I did not even go to the movies or grocery shopping, except when the drive was extremely well lit and I was willing to take a chance.

 

Now let me jump ahead to vision therapy. After my eyes “clicked” into place that afternoon/evening and even more in the days that followed I began noticing details and even whole objects that I had not seen before. It seemed that because my eyes had not before resolved certain details, like the boundaries between a near object and the background, which (and I know this sounds weird) had always been just a jumble and confusion of lines, not a crisp boundary, they simply ignored them. What that boundary defined simply disappeared for me. So, for example, if I were looking at a group of objects against a complicated background, the background and the foreground would simply mesh and much of the “picture” would be lost to my sight, to my understanding. A  collection of plants sitting in front of a  messy bookshelf might defeat any attempt to resolve it into more than a mass of greenery and generic books. I would not have been able to separate the plants into distinct leaves on distinct plants nor distinguish one book behind all the greenery from another. The meshing of lines and confusion of background and foreground would have made it all impossible.

 

THis is very difficult to explain to anyone who has not had this experience. Indeed, I cannot recapture it for myself, now that I have stereo vision; I can only remember what I saw when I did not have it. Imagine you are looking through an aquarium window and you see dozens of fish snoozing in perfect rows. You can see the rows and sight down them, 12 fish deep, counting each fish and see that there is space between each fish. But without stereopsis there is no space, and the consequence of that is tremendous: Without palpable space, there can be no perceived division, no distinction between the fish either, so that you actually cannot tell how many other fish are there, nor count them precisely. You might know, somehow, vaguely, that there is a “mass” of fish, but to say exactly 12 would be impossible, unconceivable to you without stereopsis. In point of fact, you’d have trouble resolving the fish into anything but a vague notion of  a “mess o’ fish.” At best they merely overlap like sheets of paper, rather than sitting each in its own three dimensional pocket. At worst, you can’t tell anything more than that there are a bunch of fish in there. And I’d be hardpressed to say which was indeed worse.

 

So, once I had stereo vision, I finally noticed, in the sense that I literally could see the plant leaves, the fish and other things I hadn’t seen before. Another newfound aspect of vision was that the foreground became sharp when I focused on it, but the background blurred. I had heard about this phenomenon, but had never seen it before, wondered what people were talking about all my life. When “laser photos” were first shown at an exhibit on the New Haven Green in the early or mid  1970s, everyone was oohing and ahhing over the crispness, the lack of blurring of the background, how everything in foreground and background was so detailed…But I remember thinking, What is the big deal? I see that all the time. And I didn’t understand at all what they meant by blurring of the background compared to the foreground…It was all mumbo jumbo to me. Of course, since I didn’t understand, I simply remained mum about it. I figured, okay, maybe I didn’t get it, maybe I was too science-stupid to understand. I was in fact either an A student just out of high school science or a pre-med post-college student, but since I couldn’t figure it out, I simply chalked it up to my lack of intelligence and moved on. Had I understood the implications both of what I did and did not see, I might have happened upon the problem earlier in my life. (THough likely not a solution, since they were telling people at the time that stereopsis could never be regained in adulthood.

 

So, here I am, Jan 2009, newly stereoscopic, able to resolve details I could not before, seeing more of the world and even able to notice that the background blurs when you focus on the foreground, and I decide, maybe I’ll try to drive in the dark…just once. I don’t know why I thought it might be different, but I had the sneaking suspicion that I might resolve the darkness differently too.

 

I started up the car and waited for the lights to turn themselves on (so I wouldn’t forget to turn them off). Then with a little trepidation, I pulled slowly out of the well-lit parking lot. Immediately, I could tell the difference. For one thing the whole world seemed better lit now. I could see, well, details where before there had been only darkness, and confusing chiaroscuro. Streetlights defined things, rather than merely casting shadows onto them, and assisted my vision rather than merely making matters worse. I could see into bushes, could see branches and inside the hollows. Dark recesses, doorways became just that: recesses, doorways, and not just patches of darkness, black blurs to stump and confuse me. My sole difficulty lay with the headlamps of approaching cars — these as always tended to unnerve and “blind me.” I found however that if I concentrated on the road and the side of the road, I could see right through them, that they did not in fact blind me at all.

 

 I once was blind to much of my environment and didn’t even know it. I thought at the time I started seeing Dr D that all I wanted was to recapture the experience of beauty I’d gotten a glimpse of when mesmerized by tree bark — the reason I embarked on Vision Therapy (no pun intended). I never dreamed that I would gain so much more vision and so much more functioning in my life in the process.

On Writing and Memory

I am trying to start a new book, another memoir. This is an exciting endeavor but I’ve gotten stuck on the problem, a perennial one I imagine, of how much does one really remember, and how much does the mind “make up,” that is, remember improperly? I know that some writers of autobiography — to my mind a more stringent form, requiring research and some historical context –and memoir make the claim that every word they have written is factually accurate, to the extent that they have checked each one against the memories and records of others. Then there are the infamous ones who have played so fast and loose with the truth as to have lost all semblance of it. These have produced literary scandals (as well as books that probably earned their authors much more income than if they had actually stuck to the facts) and more or less short-lived discourses by the punditry on the nature of truth and memory: what can we really know? Since I am something of a sucker I tend to take both of these at their words, when in fact I daresay that neither of them ought to be. True enough, the one has done more work than the other, and has made an honest effort to search for the “real facts” in his or her history, but my question is this: Can it be done, one, and two, why should the collective memories of say, ten people chosen by the author (biassed) be more “objectively real” than the simple truth of what the author herself remembers? Yes, you might build up a larger group of pieces-of-the-elephant if you have ten blind people who feel only one part. But unless you have someone who knows how the pieces fit together, you still only have elephant pieces…And so ten pieces are no better than the one in the end.

What I am saying is this: the author, the person who lived the life has to be the one to make sense of it. She might have a thousand “elephant pieces” — memories given her by ten people, yes, or only her own memories but in the end she must construct what the elephant – her life–looked like out of them. In some sense, there are facts and there are facts, but the work, and the life, and the living is all in the interpretation; always was and always will be.

That said, I am having trouble getting started, because I don’t know whether I want to use more “objective” sources or evidence this time, or not. I am perfectly comfortable using what is close at hand: my journals, my photos, the people I can easily consult. And I do feel very uncomfortable with mining deeper records: I do not particularly want to see what is written on my hospital charts during months-long stays when I was ranting and screaming for days, or engaging in outrageous behaviors like taking a dump on the floor of the seclusion room, or disrobing and…I can scarcely bear to think I did such things, frankly, and do not want to read what was written about me at the time, knowing nothing can be corrected or updated to show them the “new me”. A sad fact about hospital records and workers: they only see you when you are at your worst; they rarely get to know if you get better. Much less get to know you when you are well. And if you ever wanted to sit down and tell them what was actually going through your brain at the time they believed XYZ, but in fact QRS was happening, well, forget it.

So, I am loathe to overturn those stones, growing mossy as they nearly are now, some four years later. It pains me even to bring my mind across the memories of them. I have no wish to flagellate myself. My own journals say little, but it’s about all that I want to know. At the same time, my own brow-beating conscience tells me, NO, you must do what you do not want to do. The very fact that you do not want to do it means that you should. No pain, no gain—

Oh, I just go on and on. I would make this next book a torture to me, nothing of pleasure at all, just to serve my scruples. Be gone! If the writing is only to torture me, why do it? I’d be better off with my artwork and sculpture. But writing nurtures me, so long as I do not let my illness turn it into a punishment. Is there any need for me to use the historical records in telling the tale of my life? Did my first book lose anything in my not doing so? I would change a lot in DIVIDED MINDS, if I could go back and do so — add scenes here, take out one or two, most certainly make better transitions — but except for appending a much clearer discussion of this very issue, and also a better disclaimer, I wouldn’t change the way we wrote it.

So I might have talked myself to a place from which I can start, allowing myself the freedom not to have to delve into the official records or consult professionals involved in my care unless I am currently in treatment with them.

Your past after all resides as much in what you remember as it does in anything documented. You are mostly what you remember, and what you remember is sculpted by time and changes over time. If you think your memories remain the same, read back in a diary you haven’t read before, and recover the accounting of a incident you thought you’d recalled with accuracy…You’ll see how inaccurate your “memory” was and how formative this memory had been nevertheless. Then remember that the accounting is itself a memory, tainted by emotion and interpretation and consider those “ten people with their elephant pieces” who tried to give you objective memories of your history. Were they truly objective? Were their memories, even collectively, any more factual and objective than your memories?

In the end, memory is fiction, as someone once wrote in The New Yorker magazine, memory is, well, made up, not real, imagined. I agree, but it is all we have. Literally. Without memory we would be without anything at all, no culture, no civilization, no nuthin’. So let’s not pretend that the fact that memory is fiction isn’t critical. We need memory, and memory is, well, fundamentally untrustworthy, which is why we need thinking, and thinkers and writers to interpret history and memory… Memory is the most important thing we have, the most important attribute we can impart to anything: in almost every sense of the word, when we remember something we keep it alive. Maybe not literally, but then again, it is memory that keeps a conversation going on longer than five minutes. If you forgot what you were talking about ten minutes ago, or to whom you were speaking, nothing much would get said…

Vision Therapy: Seeing Inside the Snow

I stood inside the snow yesterday evening for the first time in memory. I stood inside the snow. Does that seem like a strange statement? Yes, I have been out in the snow before, though god knows it hasn’t snowed in southern New England much these past years so last night’s storm of whitefall was really something to behold. I was holding my breath at 2pm yesterday, because the forecast had predicted heavy snow starting by 11am and it still was only cloudy by mid-afternoon. Then a half hour later, I looked up from my computer, and lo the sky was white with skirling snow coming down so furiously you could barely see the horizon. Thrilled, though still convinced it would switch to rain mid-way through, I pulled on all the warm clothing I could find, plus two pairs of socks and a thick pair of clogs, mittens and my warmest coat: I meant to go outside in that weather. Danged if I was going to be anything but warm!

Well, I didn’t need to go very far from the door. No one else was in sight except for one elderly gentleman sitting inside the lobby near the Christmas tree, and someone already shoveling snow from the walkway. Neither paid me any mind, which was good because I was not there for attention. Actually, in a sense it was for attention, it was to pay attention to the snow, to really see it, that I had bundled up and gone out there. I thought there would be some need for effort or some, I dunno, some before, before I could see it, but in fact I was inside the snow, within the different levels, layers, depths of it before I knew it. I did know it, though. It was immediately and stunningly obvious to me that this was something I had “never” seen before, or not in any retrievable memory. What I remembered was that always before snow had fallen in a kind of whitish mass, a jumble of flakes more or less undistinguished from one another, because indisitnguishable from one another. I can’t emphasize this enough, how if you cannot perceive depth, you lose detail and even the ability to perceive certain structures because of it.

For instance, I now can easily see certain aspects of my palm plant that before were literally invisible to me, because I could not distinguish one leaf from another…and therefore could not see the details that defined these aspects. Just so the snow. Now, it is so clear to me that many many flakes were falling, and what size they were and even what texture they had. But I know that last year I might have had to guess as to all that, or judge it purely on the basis of the feel of flakes falling on my bare skin. Seeing the mass of white flakes falling would not have given me any more accurate information than that it was snowing a great deal. How many flakes fell per foot, or how big the flakes and what kind, I would have had no way of telling.

Yesterday all that changed. I saw that I was actually inside snow, not looking at a curtain of snow, but within an ocean of it, with snow all around me in every direction for many miles. It might sound strange, but the very act of looking through the spaces between the flakes, the sort of weird tunnels that space made as the flakes fell, was extraordinarily beautiful. It is not something I think that most people see, or perhaps can see, having gotten too used to stereopsis (depth perception) or never having lost it. If there were some way for me to lend others this experience, or have them learn to see it from my persepctive, I would share it, as the world is astonishingly beautiful, and everyone should have the opportunity to perceive it, though without having to lose stereopsis to do so. I suppose that is what the various 3-D movies and anaglysh photos of fantasy scenes offer (to view anaglyph pictures you utilize red/green or red/blue lenses for the 3-D experience). One goes to a 3-D sci-fi movie to be wow’ed by the special effects that are so stunning, and there one appreciates the beauty of that “world” — but does it rub off onto an appreciation of the beauty of this one? Alas, I doubt it. I doubt that viewers of the movie understand that this world is as 3-D as the movie is, and that what they see in the world is as wonderful as what is in the movie. No, this world is simply too prosaic to be seen. It truly is a matter of seeing with new eyes. Which is what I have. As I told Dr D, she changed my life with her Vision Therapy, and I couldn’t be more grateful.

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