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.