Mary Neal Tells Her Story

I am going to try to embed the youtube videos of Mary Neal telling the story of what happened to her severely mentally ill (but non-violent) brother Larry M Neal in Shelby County Jail, TN, but I am not sure if it will embed or not. Here goes nothing! Ah! It did work, So the top one is first and the second one is last. PLEASE WATCH. and then go to the website mentioned in the post below this one and see more details of what is going on. This never ought to happen in the United States, it is evil, but it does, and it happens far too often. I think Johnnie Cochran would turn over in his grave if he knew what had happened to and within his firm after his death…

Thanks, everyone!

Incarcerated and Mentally Ill: Larry Neal’s Story

Larry Neal might have been just another chronically mentally ill man living in Shelby County, Tennessee, perhaps not living very well, because he didn’t take his meds so he was often disruptive and committed petty crimes like loitering and panhandling and even “theft” — if you call pilfering supermarket grapes in plain sight of the clerks “theft.” He had been in the hospital, he had been in the hospital a looong time, from the age of 9 through age 28 or more because of mumps-induced case of schizophrenia, which is to say, known brain damage. But we all know what happened to the large state mental hospitals in the 60s and 70s: they dumped most of their patients onto the streets, unprepared  to deal with the world, and the world quite unprepared to deal with them. For many it made for a more than merely difficult situation and for some it was literally the beginning of the end of their lives.

This was the case for Larry, though of course no one close to him knew it at the time. When it happened, and indeed precisely what happened to him, no one in his family or his circle of relatives and friends knows today. All they know is that in 2003 he was picked up by the police for another of his petty infractions and instead of being dropped off at home, he was taken to the local jail where he was held, unbeknownst to anyone, and despite their many inquiries about his whereabouts, for 18 days. Despite the family’s putting out Missing Persons alerts, no one told them that he was in police custody, not until the 18th day, when the police admitted that Larry had died while detained — because deprived of his heart meds, his psych meds, bad treatment, abuse?  No one would say.

The very fact that no one would tell them anything forms a big part of this story and why it continues to haunt Larry’s family today. There seemed to be a cover-up and a potent conspiracy against their knowing anything about what happened from the very first.

I could tell you the rest of this very disturbing story, but I think it is much better told by Larry’s sister, Mary Neal, who knows all the details and relates it with better accuracy than I ever could. That said, I am going to refer you to her website and encourage you to read the entire thing, lengthy though it is. Mary is and was Larry’s champion and she continues to advocate for all the mentally who are incarcerated and against the practice of incarcerating those with psychiatric disabilities at all. Her website is truly worth reading, even though it is upsetting because of the profound injustices perpetrated on both Larry as well as his survivors.

I hope as many of you as possible will also want to sign Mary’s petition and write your congressional representatives about getting better treatment for incarcerated psychiatric patients.

http://www.WrongfulDeathofLarryNeal.com

Finally, last but far from least, here is a powerful poem Mary shared with me in the comments section in this blog recently. Alas, it is buried so far back that you might not see it. Because of this I asked if I might post it here. I think it is terribly a propos of this story but also of just how poorly those with a chronic psychiatric condition are treated compared to, say, Michael VIcks’ dogs… This is not to say that the dogs should not be rescued and treated well, only that Larry Neal and people with mental illness ought to be given at a minimum equal compassion.

DOG JUSTICE

by Mary Neal

Too bad you weren’t a dog, my Brother
In my heart, I cried
Many more people would care about you
And wonder why you died

You had no spots or floppy ears
You never fetched a ball
Instead, you were a human being
But poor, black, and flawed

You died in jail for mental illness
I know down in my heart
Your death would be investigated
If only you could bark

Dog deaths get swift justice
Their abusers are sent to jail
Poor Mama would have closure now
If you’d had a wagging tail

But you were made in God’s image
And some day, I have no doubt
The mentally ill and American dogs
Will have at least equal clout

(All rights reserved.)  Mary Neal

You can contact her at : Marylovesjustice@gmail.com

Vision Therapy, Art and Wonder

The following may repeat some of what I have written before, though expressed rather differently. I “purloined” it from a letter I wrote to someone I once knew, who I hope will forgive me if he ever visits this blog and recognizes it here.

____________________________

Life continues to present many challenges, which both the poetry book and Mary’s introduction to WE MAD CLIMB SHAKY LADDERS illuminate , I suppose, in some detail. But among the thrills and wonders of these last few years of recovery are two that are related to one another but which I would never have dreamed of in relation to me.

I speak of vision, one — of depth perception —  and two, of art. I don’t know if you have heard of the recent science memoir by Sue Barry called, Fixing My Gaze, in which she describes her strabismus  and her work in vision therapy. Apparently the book has become quite popular, at least around here, after a review in the Hartford Courant (Barry lives not far from Northampton, MA). Strangely enough, I have been writing for the past year about, among other things, my own experience in vision therapy trying to achieve stereopsis .  I believe I must have had “3-D vision” at some point, since I did not have strabismus as a child. At least not to the same extent as Barry, and I think I did when very young “see” what others said they saw through those Viewmaster toys (you must remember those binocular viewers with the “3-D” slides?). My later lack of 3-D vision never bothered me, apparently, and I never knew that I was missing anything, until I developed frank double vision about four or five years ago. My optometrist told me I probably had had unrecognized intermittent exotropia since childhood, but that my eye muscles had been somewhat stronger then and so my vision had stayed single. She could not say however if it had indeed been binocular, that is to say that I had used both eyes in seeing.. In any event, it was only when I was given prism glasses in 2008 and in February suddenly experienced brief, brief flashes of stereopsis that I understood what most people see, what I had in  fact  gone for so long without seeing. The world was suddenly, achingly more beautiful than — well, than anyone else seemed to recognize:

The first time on the Broad Street Green I passed the huge tree with its bark “sticking out” I was stunned, stopping dead in my tracks to stare at the reddish burnt sienna ridges that had suddenly leapt out at me. Stark, knifelike and jagged, the crusty surface was backlit by an early setting sun in such a way that  it all seemed limned with light. A gentle roughness edged the troughs and depressions. Spawned from the cortex wood, the bark strained and stretched. I could scarcely believe how the air gently touched and tasted each indentation and projection of bark — as if saying, “I love you, I love every inch of you and my kisses, my airy bearhug proves it.” Just as surely as I knew the air loved that bark, I knew that space, the “emptiness” that cups and holds everything in its place safely,  adores matter. This struck me as neither bizarre nor even uncommon, only obvious. What was strange and unfortunate to me was the fact that no one I spoke to about this experience seemed to know what I was talking about…

I cannot tell you (or anyone else for that matter, except perhaps Sue Barry, or Oliver Sacks) how much “space loves us” and everything it touches. Space is what gives us as a gift to ourselves..And when I saw it, saw space for the first time I fell in love with matter, and with the hollows and shapeliness of everything. I wanted to do nothing but gaze upon the world without touching it or or talking for at least a week…I wanted to walk around in silent solitude, experiencing space without interruption, to see without the interposing of frivolous conversation how incredible it was that you write words with pens held above the paper; that when you see a sign or a billboard, there is — and you are as certain of this as of any delusion —the knowledge that there is  flatness to it, and that “more space” lies beyond it…Someone’s nose which reaches out in space is far more interesting than their voice, and the way a hand extends outward can be the most lovely thing seen…Indeed, I would tell people quite spontaneously how beautiful they looked, the way their noses projected from their faces, or their hands suddenly coming out at me…

Oh, it is so impossible to convey the sheer — well, even now there are no words for this, no words beyond that single inadequate word, beauty, for which there seems to be no useful synonym. All I can say is that while I felt no better about myself, I certainly fell in love with the substance of the world! Who can say, What is the matter with the world? Seriously? All is the world is the matter, and that matter is more exquisitely lovely and worthy of being preserved than even many principles — Free trade, capitalism, rugged individualism above socialism in any and all forms etc —  Americans feel they have  a right to hold so dear…
As for Art? In my cooler moments I reduce it to “medicine”, to symptomatology…thinking perhaps this amazing talent, so unexpected and newfound, has merely to do with the Temporal Lobe Epilepsy or seizure disorder with which I was diagnosed after having ECT about 3-5 years ago. I don’t know. (I read in SEIZED by Eve La Plante that not only are there personality changes but one can acquire sudden artistic abilities and interests, almost full-blown after developing TLE..so who knows?) Perhaps not. In any event, (I should mention that this is my theory little mentioned to anyone at all…Not sure to whom I should talk…) starting in 2007 I took up lifesize papier mache sculpture in a serious way, and just a week ago suddenly, VERY suddenly, discovered that I could paint portraits, just like that…I had never done a portrait before, rarely even tried to draw, had always said I couldn’t draw or paint for beans. Then one instant I felt drawn to paint (with which I had always decorated my papier mache, with swirls and colors but not true representational painting) and to doing “real art”. I “decided” I would paint a young man, and then went ahead and fearlessly did so (see first attachment)…Since then I have done one portrait a day. Some imaginary, some from photos…And I have no idea, had no idea I could do so at all! Frankly, ditto the sculpture, though I am getting used to that ability now that I have several to my name…(see two other attachments for examples of earliest pieces).
I hope you won’t mind all this “Wow is me” stuff…I’m not usually so impressed with myself, I assure you. However, while I am at it, I want to send you three newer poems. I actually dislike most of the illness poems in the book, and want you to see what I have been doing more recently,  since the DIVIDED MINDS book was finished in 2003. I hope these poems speak for themselves. The “Epithalamion” one got a lot of chuckles, and ought to, when read properly (best out loud). I read it at my twin’s wedding. “To the Reader” will be the first poem in my second book, the opener, though perhaps not as “welcoming” as “How to read a Poem”.  And the vision therapy one is about what I have been doing in order to regain stereopsis. Which by the way really works, vision therapy that is, despite the skepticism of most ophthalmologists, who never bother to try it out, just condemn and contemn it out of hand, because it is done by ODs not MDs….VT has to be continually practiced though or like me you can lose the ground you gained after a while. Now I struggle to gain it back. I vow to  keep practicing. I do not think I can go without the exercises not after having gotten my eyes to do what they should do. It is so discouraging now to be back at nearly square one, I must admit…

Compulsive Eating and Zyprexa (updated)

ALL EYES ARE UPON US
ALL EYES ARE UPON US

This is my ALL EYES ARE UPON US papier mache sculpture head — It should easily be finished by the time I am having a poetry reading and exhibit in Mystic on November 15th. I would like to exhibit it with the others if possible. It is the newest of my work and therefore the one I am most proud of. I am not completely clear just where I am going with it, but I do know not to worry, that inspiration will come to me eventually. Indeed, some already has; I am starting to place a tri-folded American flag underneath her ( yes it is a woman…) arms, as if she is hugging it for dear life…Why? not sure, but I believe my subconscious has a message for me there…I will decipher it and rest of it later, when I am through. However, my thoghts on the “meaning” is never the last word on it. I expect my viewers to do the same, that is, interpret the sculpture according to their own lights, according to the vicissitudes, or the longstanding truths of their own lives, not mine. It should mean whatever they want it to mean, according to their own life experiences. All of which is to say, There is no right answer, no real meaning here, only the sculpture’s evocative power to suggest this to one person and that to another.

Now regarding this post’s title, Compulsive Eating and Zyprexa: I had a rough week two weeks ago, during which I did something self-destructive though along too familiar lines with a “fagot” of cigarettes tied together with thread and simultaneously lighted. There was talk of the hospital to “keep me safe” if nothing else, but I saw no point, and indeed there was none. No hospital had ever proven they coud truly keep me safe: I have attempted and successfully hurt myself sometimes seriously almost everywhere I’ve been sent to, including breaking a carefully supervised mirror in a make-up compact and slicing my wrist open. My visitng nurse knew and agreed but made me agree to take a PRN of Zyprexa for a while. I didn’t really fight this. As  you, Readers, know, Zyprexa is a drug abut which I am extraordinarily ambivalent. It is both the single most helpful and effective drug I have ever taken, nearly a miracle medication, if not precisely that, but also the absolute pits in terms of a side effect I hate more than any.  I have not yet figured out how to tolerate this love/hate relationship I have with the drug. For instance, despite hating the single worst side effect, I very much appreciate being able to read, read, read, to concentrate and pay attention and remember..

Oh, perhaps it feels subtle the effect that Zyprexa produces, the therapeutic one, the helpful effect . In actuality, though, the change in my behavior is immense, not to mention on some very fundamental thought patterns. I don’t actually recognize at first that all of it is drug-induced: I just sit down and decide to pick up a book — that all by itself is unusual for all that it feels natural. But so too is the astonishing fact that I feel interested instead of listless and fearful that I won’t “get” it, that I wont be able to attend,  and upon opening the book, the fact that every word seems to flow,  my mind fluid and absorbent and the words just pour, the words and the sense and the meaning, well, if I weren’t so absorbed in it, I would be amazed… But I think, Why haven’t I read before now? Why,  when it is so easy, have I not been doing this all along? ( I have forgotten that it was NOT this easy until I took the Zyprexa…). But the difference between then — not reading, and now — being able to attend and absorb and read — is not subtle at all. It is marked and significant. I finish books and articles, instead of merely dabbling in them. And I remember what I read, instead of most of the content flying in one ear and out the other.

But the same effect that brings about the therapeutic effect, unfortunately and seemingly by the same mechanism, induces the unwanted and horrid side effect of an insatiable appetite. Just as subtle and my being able to read, I scarcely notice at first that i want to eat more than usual. I simply feel increased desire for food, and think nothing of it, since wanting food is normal, right? It is only when I recognize, when I realize that it is constant, and occurs immediately after I have just finished a full dinner plate that I  begin to associate it to the new medication. My weight quicky increases, but because the food desire feels like me, as if it is simply native to me, I cannot justify it as purely drug induced, but am ashamed of my new lack of self-discipline and my also new tendency to compulsive overeating. Even when I know for certain it is all “chemistry” –and begin to tie ALL obesity therefore to chemistry to the effect of body chemistry that is out of whack, either congenitally or induced by the environment, perhaps by  igesting the wrong foods themselves. What if eating high fructose corn syrup, already associated (the reasons are still unclear) with obesity, changes one’s chemistry to produce a malignant positive feedback that only induces more obesity ad infinitum as long as one continues ingesting it? Even when I know for certain that my increased and uncontrollable appetite is pure “chemistry” it doesn’t fully relieve either my shame or my latent anger at what ‘I have done to myself.”

I have been off Zyprexa for many months now, and have rarely needed or taken a PRN, but thought it makes a noticeable and positive difference, it is the already evident weight gain I cannot/WILL not tolerate  (Truth is, it showed no sign of ending even at 160 pounds the last time I took it). My friend Joe who has taken it for years developed another very common “side effect” of this drug, diabetes, on top of ALS… So I am between the Scylla of “negative” and/or cognitive symptoms — poor concentration and inability to pay attention, the lack of a certain spark in my life AND Charybdis  — the whirlpool of an uncontrollable urge to eat up everything in my refrigerator right after I have already had a full meal, the wild animal panic if I cannot, and the lack of concentration induced in its place because all my mind can focus on is “What can I eat now???” It is a panic I feel in my hands, especially along the backs of them, more than anywhere. I certainly do not eat out of even imagined hunger. I know that. I feel FULL, in most cases because when I am hungry I usually will eat sensibly… But when smitten by the drug-induced food-seeking behavior after a  full meal, I can even tell myself out loud, “You aren’t hungry, you don’t need to eat”…this piece of bread, or cheese, or fruit, whatever is in my hand. I listen too, I put the food back at once, and wash my hands, and go back to the living room to read or do my art or whatever I was occupied in doing before I was seized by this compulsion. But literally no more than 10 or 20 seconds later, another food impulse will propel me from my seat to the refrigerator, and if not consciously thwarted I will eat. And eat, and eat. Not like a bulimic, mind you. No, I take one piece of fruit or bread or cheese (I did not last as a vegan, alas, because I felt sick and dizzy living on fruit and green and colored veggies) and a knife and a plate, and sit in a chair, and cut it up and eat it reasonably slowly while I read. But soon I am finished and ready to read again “solo.” That is when the tension starts building to another threshold over which I feel it is impossible to climb in safety.

What I do instead, is follow this ritual, with another just like it a couple of minutes later, and then a couple of minutes after finishing the second and ditto the third and fourth and… Before you know it I have eaten so many calories up to a certain point, a set point if you will, where finally the switch flips off and my “hunger” goes off, and so does the food-seeking…I can now settle down and get something done. but until the threshold is reached and surpassed, I cam think of nothing but eating. The cure for it, the only remedy, is that I must be sure to short circuit the cycle by taking Xyrem and forcing myself to go to bed after supper. And I must NOT eat all day and evening except for coffee and diet soda (luckily the Zyprexa induces food-seeking behavior and not real hunger, so I am not tortured as long as I do not break my fast), until right before bed I allow myself to take a few bites. If I do not eat at all, I do not feel like eating and the cravings do not even begin. It is when I do take the first bite, just like an alcoholic, that all bets are off and all the control gates to hold back the flood open.

I still think that Zyprexa induced eating and 15 mg of Abilify-induced lack of appetite would be a great way to study the science of appetite, what causes compulsive eating and what breaks that cycle and stops appetite and interest or uncontrollable interest altogether. I would agree to be that guinea pig but I’d aso say that plenty of people could do so…I don’t see why others would not react as I do, especially a plenty of people have had the same weight gain reaction as I.

I will try to continue my discussion of this topic soon, as I want to research it a bit and I have some further thoughts on the subject. However, at the moment I needs must get other work done…

TTFN

Oh yeah, by the way, Li and I had a decent discussion abut TLE during one of my recent visits and it made me feel better about him, for the time being. At least he is going to consider it, though he told me it never rules out schizophrenia as there are always a percentage of those with TLE that concomitantly have schizophrenia as well.

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Schizophrenia and Temporal Lobe Epilepsy: Further Considerations

Because of my having switched from Dr C to Dr B (aka Li) I did not pursue the issue of TLE any further at the time I wrote those blog entries back in April. However, recent comments here have recalled the issue to me, and reawakened my interest in finding out just what is going on — though that may take some time as I am still up in the air about whether or not I will stay with Li or try to find a female psychiatrist after all. Li has been on vacation these past three weeks, so I cannot truly say anything, but I must say that absence has not made me grow any fonder of seeing him! In fact, it has only solidified my distrust and dislike, which was more or less lying low and trying to give him the benefit of the doubt for the time being…Following whagt Dr O urged me to do, that is.

Be that as it may, it just might behoove me to take the proverbial bull by the horns and present Li with these pages, the two TLE posts and see how he reacts, see if he can or will help me pursue the ideas contained in them, objectively, not jumping to conclusions immediately but in a let’s take it slow and wait and see mode..My fear is that either he will jump on one bandwagon or another, not truly thinking about me or about the consequences of his easily accepting either diagnosis.

I was struck again though with several symptoms I have had for a long time, that were emphasized in the “Seized” book by Eva Laplante. First of all, chronic paranoia as a neuropsychiatric presentation, personality changes too, with sudden outrageous impulses (they specifically mention stripping naked and running outside!) and then, strikingly, those signal hyperintensities seen on the brain MRI scan. All this with relatively healthy “inter-episode” status…There, though, I can’t really say, as for years I was NOT healthy between bouts. In fact, I was almost constantly in the hospital, though perhaps even there I had my good times and bad, with the ups being times of good functioning.

One of my commenters, E, mentioned the difficulties he felt he would face “giving up the identity of someone with mental illness.” Yes, indeed. While I have in fact never FELT that I had schizophrenia or mental illness, always mentally resisted accepting that diagnosis, or any but the infectious disease etiology of Lyme disease, I would have trouble dealing with the fact that I could no longer speak for my “siblings in the struggle” of schizophrenia not if officially i did not belong in their “category” any longer! Forget the weird fact that my symptoms so strikingly resembled theirs, and that they felt I told their story! Forget that they all felt I had helped them immensely. It would all go for naught, because I would no longer be credible as “a schizophrenic”. Now personally it is a small price to pay, as I never felt I was schizophrenic to begin with, though I would not like to have my books become something of a farce…But I would indeed feel bad for those I wanted to help with all my writings. Who would I speak for if not them? And I would have lost my community, so to speak!

However, I do not think the issue will be that easily resolved, not unless I have one of those deep EEGs and it is positive…But I doubt it would be, even if I could have one. They don’t do them here, only in New Haven, and even then I am not certain how definitive the results are: if you do not show abnormalities does that completely rule out TLE or only indicate a negative showing at that time? I did have two EEGs separated by years, both time while I was on anticonvulsants, and neither one showed any seizure activity, but I have been told that regular EEGs often do not indicate TLE anyway. So I am not sure how they would determine TLE for certain versus schizophrenia, except by a preponderance of opinions of various docs. Well, so far, not a one has actually diagnosed it or even gone as far as to suggest the diagnosis. All Dr C said was that I had TLE insofar as I had olfactory hallucinations, but he said nothing whatsoever about my schizophrenia…Maybe he would have, but I got paranoid about him and left before I had a chance to find out.

I wanted to go back to that APRN, because I did like her and thought I would be comfortable with her. But I didn’t think she would be up on TLE when I met her, and that was what made me NOT go with her in the first place. Aaah, this is what made me want to see a doc in the first place, and I must remember my goal. I want to find out about this, get it over with, or under my belt or whatever the proper expression is. I want to find out from someone who knows, what the possibilities are…Maybe I ought to start with a neurologist, and skip the psychiatrist altogether? I never thought of that. Perhaps that is the way to go, but the thing is I do not like anyone in the group that dominate the local hospital…And I do not know anywhere else I can see anyone…Nor who would in fact be good. I cannot bear to see someone cold or uncaring, or incompetent! But how to find someone I could both trust to be, well, someone I trust and someone who is bright enough and interested enough to get to the bottom of things?

P.S.

I found this very interesting article in iGoogle for scholarly articles: http://neuro.psychiatryonline.org/cgi/reprint/9/2/293-a.pdf

If it opens properly it should bring you to an informative article on TLE and psychosis and psychiatric disorders “ictal and non-ictal,” which means, for those of you who don’t know the word, psychiatric disorders seen with the seizure and outside of the seizure.

The Icarus Project and Mad Pride

This is how Newsweek begins its article about the Icarus Project and Mad Pride:

We don’t want to be normal,” Will Hall tells me. The 43-year-old has been diagnosed as schizophrenic, and doctors have prescribed antipsychotic medication for him. But Hall would rather value his mentally extreme states than try to suppress them, so he doesn’t take his meds. Instead, he practices yoga and avoids coffee and sugar. He is delicate and thin, with dark plum polish on his fingernails and black fashion sneakers on his feet, his half Native American ancestry evident in his dark hair and dark eyes. Cultivated and charismatic, he is also unusually energetic, so much so that he seems to be vibrating even when sitting still. http://www.newsweek.com/id/195694

Readers will note two things immediately: It is not common for someone diagnosed with schizophrenia these days to be “delicate and thin” — despite articles claiming to prove a supposed link between schizophrenia the illness and obesity, most of us would say that weight gain went right along with taking meds from the get go. And that most of us were originally either of normal weight or even thin compared to “normals.” the other striking thing, I think, is Will Hall’s level of energy. Most of those with schizophrenia, at least those on meds that I know, have a much lower level than normal of energy and motivation, which again is attributed to the illness itself. Now of course negative symptoms might be an effect of the illness, yes. But I also know that at least when I took the older drugs, like thorazine and mellaril, they added tremendously to any inner listlessness I might have felt. Indeed, what else is the infamous Thorazine shuffle but a drug side effect that practically screams medication-induced psychomotor retardation?

In any event, it may be that some of my readers with schizophrenia, and many of the mothers (and in my experience when caregivers visit this site it is often mothers who do though sometimes fathers do as well) of those with schizophrenia, may well disapprove of my posting this link. But I feel it deserves a viewing. Too many of us suffer the effects of medication without benefiting from its advantages not to offer another form of hope. As long as someone is not a danger to him or herself or others, why should they not be offered the experience of Mad Pride, should they prefer it? In these later stages of my own “condition” I too long to be off meds and to experience my experience, to do art unencumbered by the effect of meds that fatigue me if nothing else. But if I feel enabled now, and emboldened by some inner force to do art, I just might be liberated to unknown heights once off the meds, and if I can control the dangers I used to put myself in vis a vis cigarettes and such, why should i not be permitted such an experiment. Alas, no one here would ever allow it. I would have to endure such remonstrations and scolding and worse from relatives and others it is simply not worth it, or else I simply could not bear the bitterness of fighting with them…SO I am stuck, stuck on these deadening and dangerous medications until such a time as I feel free enough to move away, leave town and move elsewhere. Until such a time as universal health care enables me the freedom to leave the benefits Connecticut so generously provides me as a Medicaid/Medicare patient, and live elsewhere, I am simply forced to live in my same old tiny apartment and change nothing.

But some of you might be wanting to make that change and be more capable of it, be more able to maintain 1) stability and 2) a family support network, rather than a state of constant resentful watchfulness and remonstrations of such bitterness that make it not worth the effort. I know my friends would definitely support me, but I need my family to as well, or feel I do…I am not yet ready to say I can do without it at any rate…And so I remain in thrall to their demands on me, despite the fact that for many years I had no ties to them at all, and neither help nor obligations bound us. If it is good now between us, and I love that part of it, it also means that I feel that I must live up to expectations I could disregard before…and that is so hard, and often such a burden.

Nevertheless, I love them, insofar as I am capable of the emotion of love (see posts below for an explanation of that caveat). And if I am not, then I feel for them as mu9ch as I am capable of feeling for anyone…which is all they can ask.

But I have diverged from my initial subject matter which was Mad Pride. Tomorrow I give a talk and a poetry reading at the House where I live of 250 residents, though only a handful are expected to attend.  IN the talk I finish by answering the question, do I link mental illness and creativity, and my answer is, Maybe, but even so, in most cases the best work, mine at any rate, is done “best when I am better.” I mean by this that deep in psychosis I cannot write anything decent, if I write at all nor do any decent art, because I am no longer motivated nor able to concentrate well enough to do so. Perhaps in a manic state I have been able to, but those have sadly (yes!) been too few. Otherwise my more extreme moods  have been called a mixed state or major depression. In any of those moods, and certainly when extremely or even moderately paranoid, I do little work at all. And when hearing “bad voices” ditto, since that is when I am most likely to be concentrating on acts of self-harm and least on self-nurturing activities such as art. So you see why I say what I do, that only when I am at least getting better do I do my best work?

Moreover, I believe this is true of most people. It seems to me that even in the case of the Mad Pride artwork at the Newsweek site, those artists were not in fact psychotic at the time they did their art, Oh, perhaps they were depressed, but clearly not catatonicly depressed, by definition. And I cannot believe that they were disorganized even if their diagnosis was schizophrenia, because however weird the artwork, there was recognizable order and ordering in each and every one…

Welp, I am getting fatigued just writing this, so I will leave you with that short disquisition and the link to The Icarus Project. I am not endorsing or not- endorsing it, only expressing my interest and indicating my plan to continue to read up and find out more. Somewhat not surprisingly, there is an active ? branch in Northampton,  MA, which is the town I have wanted to move to for a number of years, but have not yet had the nerve. Nor has there been the financial or medical feasibility. Now there might be, but it is still not possible. Oh, I wish I could move, but there is Joe to consider, and I would not leave him now.

That said, here is the Icarus Project Link. Enjoy? Comments will all be read and appreciated. I will respond if I can.

http://theicarusproject.net/

Self Portrait

Self portrait
Self portrait

No one who has seen this has not recognized me, apparently, however simple this portrayal might seem. It was a mere sketch in comparison to the others, I must say. Done late at night, with a hand mirror, with only one decent light, a standing lamp, near enough to illuminate me but clearly casting rather dramatic shadows.

Since then I have been fighting an on-going migraine and so I have not been able or felt up to doing painting of any kind. Cleaned up my apartment under the duress of some visitors coming, but aside from that have gotten nothing of any substance done. I am supposed to be editing my father’s book (the primary author is someone  I’ll call PN but I will refer to it as his book for now, a shorthand for PN and his book) I am supposed to be editing their book but this headache has so laid me low that I have done very little this week. I simply cannot do any difficult mental work when my head is throbbing! At the moment — at the moment I can feel it building back up in the background, though it had been better for a couple of hours (I woke in the middle of the night and stayed up for a while writing this and wandering around trying to shake off my listlessness to do something (I was wide awake otherwise).

Well, no use worrying now. I am yawning so sleep beckons. Must go to bed. TTFN

Portrait painting — what me?

The eyes have it
The eyes have it

I did these the last two nights…Cannot believe I was capable of it, but I somehow managed to paint them. Started with the eyes, and the rest grew around them. THe only practice I had was painting the three eyes beforehand. Weird!

Then, out of the blue I painted these two portraits, with no notion that I had the ability to do so. I simply was filled with the desire to paint them, and so I did!

First Love

Poems by Pamela Spiro Wagner

Here are a few sample poems from my new book WE MAD CLIMB SHAKY LADDERS, (which, despite what many have been told IS available from Amazon and B & N and upne.com so keep trying if you have been told it is not…I know as I just got some extra copies from amazon). Here is just a teaser to get people interested:

These first two are from the first section, which concerns my childhood and the first intimations of illness. Here are the first indications that touch is difficult, even threatening to me. In the second poem, I describe my twin sister’s wholly different attitude towards her body, how in a more innocent time, wolf whistles by teen age boys were considered harmless, complimentary even, and wearing tight jeans was not an invitation to anything but, as in this poem, pleasure on the part of both young men and the young woman described…

AMBIVALENCE

Touch me. No, no, do not touch.

I mean: be careful —

if I break into a hundred pieces

like a Ming vase falling from the mantle

it will be your fault.

JUNIOR MISS

Cool as Christmas

plump as a wish

and simonpure as cotton

You stroll the avenue

mean in your jeans

and the boys applaud.

You toss off a shrug

like a compliment

with a flicker of disdain

Catching the whistle

in mid-air and

pitching it back again.

“Eating the Earth” is more or less a true story insofar  the little boy in a nearby neighborhood did rub a certain little girl’s face in dirt for telling him where babies came from  and she did dream the dream descrbed. What this all means is up to the reader to decide, however.

EATING THE EARTH

After Tyrone, the little boy next door,

makes her eat a handful of dirt

for telling lies

about where babies come from

her father says it will do her no harm.

You have to eat a peck of dirt

before you die, her father says.

He also says she hadn’t lied:

babies do come that way.

She cries after her father

leaves the room and she sleeps

all night with the lights on.

Her father tells her other things,

that earthworms eat their own weight in dirt

every day and that their do-do

(he says “excrement”)

fertilizes our food.

She makes a face over that

and doesn’t believe him.

Besides, she says, we’re people

not worms.

And we’re so great, huh? he says.

Well, I’d rather be a girl than a worm.

He says nothing.

He is grown up and a doctor,

he doesn’t have to worry about

being a worm.

But she does.

That night she dreams that Tyrone

dumps a jar of worms down her shirt

and that their dreadful undulations

become hers and she begins

eating dirt

and liking it,

the cool coarse grains of sand,

the spicy chips of mica,

the sweet-sour loam become her body

as she lives and breathes,

eating the darkness.


FUSION

It was a frying pan summer.

I was playing croquet by myself,

missing the wickets on purpose,

rummaging my pockets for dime-sized diversions.

It was a summer of solitaire.

I laid the cards out like soldiers.

I was in command.

Then you came out

with a mallet and a stolen voice

that seemed to rise disembodied

from the gorge of your black throat

and you challenged me to a game.

You ate me with your mosquito demands

though I, I didn’t want to play with anyone!

I hid my trembling in my sleeves

refusing to shake your hand.

I thought: this is how the Black Death was

transmitted, palm to palm, hand to hand,

a contagion like money.

You smiled the glassy grimace

practiced for boys all summer in front of a mirror.

If I looked you in the eye I would die.

I knew then all the sharp vowels of fear.

It was late in the afternoon

and I was frightened

when our shadows merged.


OUR MOTHER’S DAUGHTERS

I dreamed my mother cut off

my baby toes, the suturing so perfect

she left no gangrene, no scars, just a fine line

of invisible thread and four toes on each foot

instead of five. The job done, she left me

at the “crutches store” on Whitney Avenue

where I could find no crutches to fit

and so hobbled back toward home

alone and lopsided.

This is true, and she was a good mother

most of the time, which meant

that I never lacked for anything

she could buy, yet still I grew up lame,

disfigured (though not in any

noticeable way) and always with the sense

I had been abandoned before my time.

This has all been said before: our mothers

leave us, then or now, later or sooner,

and we hobble like cripples

toward the women in our lives

who can save us. Or else we limp homeward

knowing we will never make it back

before we wake up. And when we do wake up

we find we, too, are mothers, trying desperately

to save our daughters’ legs

by amputating their smallest least necessary

toes, taking the toes to save the feet

to save the legs they stand on

in a world where we ourselves

are not yet grounded.


PARANOIA

You know something is going on.

It is taking place just beyond the range

of your hearing, inside that house

on the corner needing paint and shutters,

the one with the cluttered yard

you always suspected sheltered friends

in name only. It may be in the cellar

where the radio transmitter is being built

or the satellite. A cabal of intelligence

is involved, CIA, MI-6, Mossad.

It is obvious plans are being made;

didn’t your boss arch his eyebrows

while passing your desk this morning,

grunt hello, rather than his usual

“Howahya?” There are veiled threats

to your life and livelihood. Someone

is always watching you watching

and waiting for whatever is going

to happen to happen.


THE CATATONIC SPEAKS

At first it seemed a good idea not to

move a muscle, to resist without

resistance. I stood still and stiller. Soon

I was the stillest object in that room.

I neither moved nor ate nor spoke.

But I was in there all the time,

I heard every word said,

saw what was done and not done.

Indifferent to making the first move,

I let them arrange my limbs, infuse

IVs, even toilet me like a doll.

Oh, their concern was so touching!

And so unnecessary. As if I needed anything

but the viscosity of air that held me up.

I was sorry when they cured

me, when I had to depart that warm box,

the thick closed-in place of not-caring,

and return to the world. I would

never go back, not now. But

the Butterfly Effect says sometimes

the smallest step leads nowhere,

sometimes to global disaster. I tell you

it is enough to scare a person stiff.

Psychiatrist: Honesty, a secondary policy…?

His honesty I mean, my new psychiatrist’s (Li’s). For instance, when I went the first, second and third times, he gave not the slightest indication that he knew me or even of me, and when I mentioned that I was a writer and had written DIVIDED MINDS, he acknowledged only having seen “some twins” on CPTV (our local public television channel) and was wondering if that might have been me…

Now, as of my most recent visit, I come to discover that Li had known all along who I was and that I was the same person he had seen on the TV show and that I had written said book. For all I know he has already read the goddam book and has not admitted it even now. Worse, he admitted this last time that he recognized my name and remembered me from the times in the 80s when I was hospitalized  at a local psychiatric unit right — he had been the chief resident at the time it so happened and would get reports about me and listen to discussions at grand rounds, apparently. He had this info right from the very first phone call I made to him, i.e. when I left an initial message on his answering machine he knew who I was.

Essentially, quite despite my plea at the very first visit that he be honest with me and “never deliberately lie to me” he has decided that honesty would be only on second thought with me, just one out of several strategic possibilities and not his first and only approach. I do not understand this, but it both scares and upsets me terribly. For one thing, I fear enormously that it signifies that he too is part of  the great DO conspiracy I have mentioned so often, if not here then in my older Wagblog. This is not to say that Dr B (Li) s a DO (doctor of osteopathy equally trained in psychiatry and medicine as any MD); he is not. He happens to have attended the same med school as I did, and did a residency as I said at a hospital I was a patient at several to many times.

However, the DOs who have treated me, or been assigned to me, have to a one been in on this conspiracy to tag me as a drug-seeking addict because of my narcoleptic need for Ritalin (a condition they dismiss as either faked or at a minimum not real, merely claimed). As a consequence, they have treated me abysmally, not taking any time to deal with any of my physical complaints but “assuming ” all to be likewise connected to these putative “false claims” of narcolepsy, which is to say not real either. I do not trust Li NOT to fundamentally to believe this, and therefore, despite his dispensing the medication (just as other MDs did in order to “placate me”), to regard me with skepticism, even cynicism. In this case, I would find it impossible to continue to see him, being  likewise utterly unable unable to trust him  — naturally — to take me seriously because of course he never would.

The thing is, I am no longer willing to argue the narcolepsy business. I know I am innocent of any such charges of faking or simulation, and do not need to excuse or explain myself to anyone who questions it. I know how sleepy I have been since the age of 19, and know how disabling the sleepiness has always been. I also know that I have never abused Ritalin, only that I always needed a certain therapeutic dose that no one ever tried to find, because no one ever trusted me to need Ritalin from the get go (despite a diagnosis in the early 80s by a neurologist, Dr Neuren, at H.  Hospital, following an EEG that might not prove anything now, but was enough for him then…). Once that dose was determined by Dr O, a sleep specialist and psychiatrist, I have not needed more and in fact have usually used less than that on days when my chronic sleepiness has not been overwhelming or I have been able to stay physically busy enough to stay awake. I have also learned not to fight taking a nap, and sleep on demand most days, even when that means twice or three times a day, say from 6pm till 9pm and then from 2am till 9am plus another nap the next day at 11am until 2pm…

But where was I? I was speaking of the conspiracy, and I do not joke. I believe quite firmly that these DOs have been infected by someone else who believes it, and have swallowed her opinion hook line and sinker…but be that as it may, if Li himself also refuses to see beyond whatever he recalls of me from the past, then it is useless to continue. I do not even want a “second chance” or to be given the opportunity to somehow prove myself. I do not need his approval or his acceptance of my diagnosis of narcolepsy. I do not need him to believe that I have it, or to give me Ritalin on the basis of some begrudging agreement that he will do so, but only because he does so for so many ADHD patients that he is not afraid for hs license…If that is his attitude, well, F___ him to the max and up the A—!  I don’t need that sort of BS and will willingly and immediately dump him and go elsewhere.

Iin faact, he ought to have “recused himself” before even taking me on and admitted that he already knew me and could not ethically do so, because he already had formed a negative opinion of me that I would have to change…

THIS is what I fear, basically. I do not know if I can surmount this. I do not know that Li can reassure me it is not the case. I do not know that I can ever trust him again, given his recent admission of betrayal, however much it was a “sin of omission. He knew full well what he was omitting and why, and he also knew that I was asking for precisely the information he withheld…

__________________________________________________________

I am going to take off the week of Aug 2-9th in order to be absolutely left alone, because I know no other way to get my thoughts in order and to have some time to get both work and some artwork done…I can’t seem other wise to allow myself a workweek, and feel like no one else will. At least no one respects my right to be left alone during the week, not even at the hours I requested, and I feel so bound to answer the phone and email that I can’t even let it ring between the hours of 10 and 5pm without answering it. Also, I cannot turn the answering machine down, so I have to listen to it, which is a really awful way NOT to “answer the phone”, because they “get to me” anyway that way…So I am taking a week off, to think about how to deal with this, and also to work on my own things.

I hope I can do it. I am lying to those I cannot tell the truth to, those who will not let me be and do what I need to without making me feel guilty, and I am telling the truth to those with whom I can be honest without feelng that they might spill the beans to the former or try to intrude on the week. They know who they are…and the others do not read this blog.

TTFN.

Schizophrenia: Seeing a New Psychiatrist (Edited and Updated)

The first time I visited the office of Dr CLB I had good feelings, even though, as a new vegan (more on that in another post) I noted that his waiting room chairs were all upholstered in leather, even though they were “just” upright chairs, not armchairs, which is where you usually, which is to say, often, find leather being used. In point of fact, the entire building was much more opulent than I was used to, being in a part of the country that once had the reputation for being one of the wealthiest communities in the U.S. or at least in the state. No more, but its past showed there.

I walked in, and due to what I think is my continuing lack of depth perception, I mistook a central large planter in an atrium-type room on the first floor for an island in the middle of a large pool, adding to my initial impression of opulence. The elevator was, whoosh, silent, and took me to the second floor as if without moving, in contrast to the one in our building, which makes each floor a noticeable journey. (Since then, having discovered the stairs, I take those instead, finding a two story elevator trip rather silly.) It then opened on a thickly carpeted hallway, overlooking the pool/atrium, lined with what to me, being there the first time, appeared to be huge, expensively appointed wooden doors. Not just your ordinary run of the mill painted ones, mind you, but heavy imposing grand ones indeed, of stained wood that look like mahogany or cherry. The carpet is a deep rich color with an eye dazzling pattern that I find I cannot look at without getting upset. I easily found Dr B’s office, entered through the outer door, then the inner one to the waiting room, where I sat in one of the leather chairs mentioned earlier.

I knew Dr B vaguely, or knew of him, since he had been a resident or chief resident once at a hospital where I had often been a patient in the 80s, though he had never treated me, nor had he had any individual interaction with me. He has so far never given me any indication that he knows or remembers me, and so I have not asked, though he did say that he had heard of Divided Minds and had seen Lynnie and me on public television, though did not make the connection until I mentioned that I am a twin, and that my sister is a psychiatrist.

Anyhow, that first meeting went well, largely I think, because I felt very well, and because I feel comfortable answering questions, which he asked in abundance, that being an initial, Getting to Know You, session. After that, he has stayed more quiet, which is difficult for me, as I am much more used to Dr O’s directive style, wih her taking such an active role in therapy. It is hard for me to start each session, or take charge of my own therapy. I am so used to simply talking about the previous week, which always worked well for me with Dr O, because it always brought up enough “other stuff” to discuss that we were never ever at a loss for subject matter, not once. But I find that without L’s direction, and without his asking me questions, I feel, I dunno, that I don’t know what to say. I am  so used to Dr O in some sense picking out from my initial answer to the question about my week or even from, How are you, what exactly is most important, that I am simply flummoxed.

I told Dr O that after she left I would most want to work on 2 things in therapy now 1)  gaining “real self-esteem” about who I am, not just for what I do — self esteem meaning, not feeling evil and worthless and to blame for, well you know about all that… and 2) learning not to be or to feel paranoid in life, as well as about specific things. But those seem such tall orders and indeed so intertwined…and I do not know how to work on them, esp with someone like Dr B — L, as he said I could call him. He does not know my history or how deep these things go, how persistent they are and have been.True,  I gave him both of my books, but fear that he is not a reader and in any event has way too much to do to read either one any time soon. He has not even taken the time to call Dr O, or perhaps doesn’t really want to, I dunno. All I know is that he keeps telling me he will, but never does, never did before she left for her trip to Bhutan. She is leaving for good on the last day of July, and I am beginning to doubt that he will manage to speak with her at all before then. It is possible that he does not WANT to, but he ought to say so, and tell me why, rather than simply ignore my request and pretend that he simply missed her by accident…

The introduction to my poetry book gives some idea of my history, and I know he read that, so he has a very small idea of some of what I have been through…snuck in through the back door. But unless he actually reads Divided Minds, which is only part of the story, or talks with Dr O, which is itself only another part, he won’t understand those parts of my history…I understand myself that he might want to make his own assessment. But he needs to really grok that I am not the same person that I was for 35 years, and that he cannot judge my illness or anything about that from me now…I so resent people who discount my past because of that, pretending that it somehow doesn’t matter or didn’t matter, because of where I am now. FOr example, he keeps saying things like: you have this condition that occasionally makes you…As if this is some minor inconvenience or has only had minor consequences for me in my life, rather than having deprived me of 35 years…When it was, as you all know, horrendous, and took so much away from me…Only you guys can really appreciate that. Only you people can truly appreciate the magnitude both of what I have been through a well as the journey I have taken to get to where I am, and I appreciate that no end.

Anyhow, one of the problems with seeing L, apart from whether I can work with a man (which I do not think by itself is any problem at all, though whether I can work with him might be) is that — well, let’s just say that I both felt terrible last session and left there hating myself, hating him, and feeling that I had to leave and find someone else. Feeling like I was contaminating him and that simultaneously he wanted to get rid of me, was laughing at me, and was, I dunno, bored with and sick of me. I also detected what I felt was a note of falsity in his voice, something that sounded like it was using “tried and true technique #2” on me rather than being human and honest…

No one can know, despite my cheery and busy exterior, the depths to which my self-hatred plunges me at times, and frequently, though often without warning…It is not a mood, not at all. It is a building up of thoughts that tip me over a precipice that I need to watch out for. Because it is that precipice of guilt piled upon guilt, and thoughts of how evil I am, piled on top of all that — even without command hallucinations to spark it, OR perhaps it is that missing factor that has so far stopped me? — that lead me to impulses of wanting again to self-immolate, or at a minimum set part of me to the flames. I cannot tell you how often those thoughts arise, and how easy it would be to give in…What good I would feel I was performing for the world, by exercising myself to make such an ablution and atonement!  At the same time, I would be exorcising the evil in me, and if necessary, preventing such evil from infecting more of humanity. But I don’t follow the impulses, nonetheless. Why? Largely because I fear the real time consequences, which I so far manage to remember in time. Consequences? I imagine you think I mean, the burns themsevles, or the pain or soemthing immediately consequential  like that…, no? But it is not that which I fear, only the potential for being locked up if anyone found out that I would dread and which prevents me from acting on my wishes…Otherwise, I would pay no attention. And I refrain too, more easily, because there has been no extra urging or push to do so in the form of those command hallucinations that are so hard to ignore. Thank god for that.

In fact, I have heard NOTHING in the way of voices since February, not that I know of, or at least, nothing that I recognize as “voices” except the occasional name calling, which might in fact have been real.

I am exhausted at the moment, and having trouble distinguishing dreams from reality again, dunno why. I do not for example recall  when I last saw Lynnie, but am convinced that it was recently, and that there was something going on…But my dreams are so realistic and I also remember that my touchstone was always IF you have to ask if something is a dream or real, it is pretty certain to have been a dream! Nevertheless, this is an unnerving development, as it has not been a problem for some time…

I have to write a poem on the word “beach” for the writers group on Tuesday on top of a thoussand other commitments, so I’d better quit here. But there is much more to say and I hope to get to some of it in later days, including my depth perception, veganism and how that is going, and the developments with the book.

*** WE MAD CLILMB SHAKY LADDERS: if you have had trouble ordering it from Barnes and Noble, It IS AVAILABLE. They only tell you it isn’t, because they may not carry it. You have to go to the store and ask them to order it. But I suggest you get it from Amazon for a discount or from http://www.upne.com  to support the press and pay full price at only 4 dollars more. Either way, if you could write some sort of review or at least put your opinion of the book in stars at the site, it would be great. Also at http://www.goodreads.com  THANKS!

New Book Is Out: Poems on Schizophrenia

Yes, I finally hold it in my hands, We Mad Climb Shaky Ladders, published by CavanKerry Press. Below is the cover illustration (minus the Spiro, which is on the final version) and the press release:

We Mad Climb Shaky Ladders: Poems by Pamela Spiro Wagner
We Mad Climb Shaky Ladders: Poems by Pamela Spiro Wagner

NEWS from CavanKerry Press
6 Horizon Road No. 2901 • Fort Lee, New Jersey 07024 • phone/fax 201.670.9065 • cavankerry@optonline.net

FOR IMMEDIATE RELEASE

Contact: Florenz Eisman — 201.670.9065

WE MAD CLIMB SHAKY LADDERS

Poems

Pamela Spiro Wagner
With Introduction and Commentary by Mary B. O’Malley, MD, PhD

Foreword by Baron Wormser

For forty years – longer than her entire adult life – Pamela Spiro Wagner has been affected by paranoid schizophrenia, a plight she eloquently explored in her award-winning book, Divided Minds: Twin Sisters and their Journey Through Schizophrenia, co-written with her twin sister, psychiatrist Carolyn S. Spiro, MD. Also an accomplished poet, Wagner has long utilized the language and emotion of poetry to express the individuality of her mental illness, capturing with vivid candor her singular inner world. In WE MAD CLIMB SHAKY LADDERS, the latest volume from LaurelBooks, CavanKerry’s Literature of Illness imprint, Wagner for the first time collects her poems, presented with commentary by her psychiatrist, Mary B. O’Malley, MD, PhD, that elucidates the clinical roots of the poet’s art.

WE MAD CLIMB SHAKY LADDERS “is much more than a testimony to a diagnosis or pathology or terminology,” writes Baron Wormser in his foreword. “The poems emanate from the place of the poet’s illness but they are resolutely poems—well-written, sensually alert, quick to turn and notice and startlingly honest. They dwell on both sides of the equation of life and art: testifying to the powerful and tenuous links between the two and demonstrating that art is capable of holding its own regardless of circumstances. Some of those circumstances have been shattering. The sheer tenacity that it can take to write poems makes itself felt here in ways that are both uncomfortable and reassuring.”

Wagner’s often harrowing struggle with life, as reflected in these poems, has been marked by psychological turmoil – periods of total debilitation, as well as intervals of recovery and hope. Her battle with paranoia hovers over the work, such as in “Poem in which Paranoia Strikes at the Grocery Store” where the simple act of shopping becomes a waking nightmare: “Who/gave you permission to enter? No one/wants you here. They are all watching….You are being followed./You are on your own.” Wagner captures the voices in her head with terrifying urgency. In “Offering,” Wagner’s very first poem, written in 1984, she writes of her compulsion to burn herself with cigarettes with a haunting remove:

The tip of the cigarette glows and grins
as I lower it to you,
Unlover,
alien body.

At Dr. O’Malley’s urging, Wagner has also included three poems she wrote during the heights of psychosis, and these are filled with scrambled ideas and garish imagery that are shocking in their raw, unguarded unveiling of the poet’s troubled mind.

Divided into five sections, Wagner’s book covers childhood and the earliest indications of illness, the years of illness, recovery, coping, and new beginnings. As with most poetry grounded in autobiography, there are important familial relationships that seep into the poems – father, mother, sister, friends. Here, these relationships are filtered through the poet’s psychosis, colored by hallucinations and delusions, yet grounded in the emotional truths that any complicated relationship engenders. In her most widely known poem, “The Prayers of the Mathematician,” which won First Place in the BBC World Service international poetry competition judged by Wole Soyinke, Wagner moves beyond the personal with an eloquent poem about John Nash, the schizophrenic Nobel Prize winner who was later immortalized in the movie, A Beautiful Mind.

“These poems are the work of a first-rate writer” says surgeon and best-selling writer Richard Selzer of WE MAD CLIMB SHAKY LADDERS, “one who has sounded the well of her own suffering to retrieve the wherewithal to transform pain into the most powerful and moving literature.”

~~~

About Pamela Spiro Wagner

Pam coral and green
Photo of the author in May, 2009

A prize-winning writer and poet who suffers from schizophrenia, Pamela Spiro Wagner attended Brown University and went to medical school for one and a half years before being hospitalized for psychiatric care. She won First Place in the international BBC World Service Poetry Competition in 2002, and co-authored, with her twin sister, Divided Minds: Twin Sisters and their Journey Through Schizophrenia, which won the national NAMI Outstanding Literature Award and was a finalist for the Connecticut Book Award. Currently she writes at http://WAGblog.wordpress.com. She has lived in the Hartford, Connecticut area for 33 years.

CavanKerry Press would appreciate two tearsheets
of any review or feature you publish about this book.

WE MAD CLIMB SHAKY LADDERS by Pamela Spiro Wagner
Publication Date: 2009
Price: $16.00; ISBN: 978-1-933880-10-5
Distributed by: University Press of New England (UPNE), 1-800-421-1561 or 603-448-1533, Ext. 255

Author is available for speaking, readings, and workshops.
Contact: pamwagg@cox.net or pamwagg@yahoo.com
Tel: 860-257-9188

Vision Therapy: Beginning Again (on my own)

I don’t know what happened, but I don’t believe I am seeing depth any more, or very rarely. I discovered this when I looked at some shelves, and again experienced the sensation of the incredible beauty of space, which told me that I was not in fact used to seeing it. If I were, I would not marvel so.

I immediately started the vision therapy exercises again, in part to test myself, hoping to reassure myself that I could still do them easily. In fact I cannot keep both my eyes “turned on”, even doing so-called pencil push-ups. During these, you wear red-green glasses and look at a white pencil held at eye level and  about 12 inches away. The idea is to slowly bring the upright pencil to your nose, all the while keeping it “one pencil”  i.e. not doubled, and the white color as red and green (due to the bi-colored glasses).  When I do manage to keep both eyes on looking at the the pencil, the pencil itself goes double and blurry. Also, another exercise, when I  manage to get both eyes on by holding a finger up and focusing on another object held behind it (the finger should double), then I notice that the background is crystal clear with jumbled intersections near borders, even though  I know from experience that they ought to blur if I am seeing 3-D.

Then there is the Brock String, consisting of three balls on kite string tied to a door knob and extended out maybe ten feet. The red ball is 6 inches from the door, the green midway from it, and the yellow ball six inches from your fingers holding the other end at your nose. The idea is to focus on each ball, and see an X form in the string in front of  a single ball, then switch seamlessly to another ball, over and over. Well, I do the green and red without too much trouble but forget the yellow ball (the near one). I cannot do that one at all, or at least very rarely. I see two balls and cannot bring them together; the X simply crosses and keeps on going until the balls appear at each end of the X rather than in the middle. It is only when by chance that I start out seeing one ball that I might be able to keep it that way, but then I discover that it is because I only have one eye “on” after all…or  that one eye is dominating the other.

I never did get new glasses, the one Dr D prescribed at the end of my Vision Therapy when my eyes had so improved. I imagine there is no point in getting them now, since they were for better vision, right? But is there anything more I should be doing, except restarting the exercises? I wonder…I wrote to her by email, but received a weird “Auto reply” that said only that she would not respond at this time…Did not imply that she ever would…So now I am essentially on my own and I only remember those two  exercises. If there are others, I don’t do them. But I do turn my eyes on by looking at my fingers, one in front of the other, several times a day, which is, I think, helpful in its own right, even if the effect never lasts and the desired doubling is small.

I guess it took several months the first time I did this, so I can’t expect miracles this second time, even though I do anticipate that it will take a somewhat shorter amount of time and less effort to get “space” back. After all, my eyes and my brain already know what they are looking for. But it doesn’t bode well for the 3-D phenomenon staying or sticking permanently without continued practice, or at least without continued vigilance…I would hate again to fall into the “not knowing I don’t see it again” non-awareness trap. I did subconsciously understand as I painted the goose that something was wrong, but I somehow refused the knowledge I ought to have looked square in the face. I guess I did not at that time want to know that I wasn’t “getting” the full pleasure from the experience that I ought to have. It might have spoiled it for me, maybe.

Now that I am free, however, I can concentrate on my exercises, and make jewelry, which uses these skills. And see how long regaining them will take. I hope not long. But I must be patient and let it happen as it happens.

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On Thursday I will see what I hope will be my last shrink and then I will choose from amongst the three that I have interviewed, though I doubt highly that #1 will be among the real choices. I will certainly count #2 and hope that #3 also provides some real choice. The first is female the second is male, so there are some real differences between them, the female also being an APRN and the male an MD, which is not necessarily a plus. However, we will wait and see, until after I have met Dt Whats his name and have some idea what he is like. Wish me luck. I have my last in-person session with Dr O on Wednesday so I’d better make up my mind soon.

Empathy and Lack of Empathy (edited)

Before I start, I want to tell you about a wonderful site on the web, and recommend a visit there: Check out http://www.compassionatecooks.com for info on a plant-based diet and man’s cruelty to animals. Also, wonderful nutrition info you simply cannot find in one place anywhere else is here, easily accessible especially if you go to the podcast and begin with #1.
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President Obama has said that in his search for a Supreme Court nominee, he is going to be looking for something with empathy. I am going to give him the benefit of the doubt of assuming the shorthand to mean that he wants the nominee to have the capacity for empathy. But what did he mean, or by extension what do we ourselves understand by this word “empathy”? The German term, coined by the German philosopher Rudolf Lotze, or Theodore Lipps (sources conflict) in the mid-nineteenth century (einfühlung) or the literal English translation, “in-feeling” was originally a term of art appreciation. “Empathize” was coined in 1924 came closer to the meaning it has today.

 

In explaining his vote against Chief Justice John Roberts, Obama wrote:”[w]hat matters on the Supreme Court is those 5 percent of cases that are truly difficult…In those 5 percent of hard cases, the constitutional text will not be directly on point. The language of the statute will not be perfectly clear. Legal process alone will not lead you to a rule of decision…. in those difficult cases, the critical ingredient is supplied by what is in the judge’s heart.”

 

Definitions of Empathy abound and here are just a few. Wickipedia: “Empathy is the capability to share your feelings and understand another’s emotion and feelings. It is often characterized as the ability to “put oneself into another’s shoes,” or in some way experience what the other person is feeling. Empathy does not necessarily imply compassion, sympathy, or empathic concern because this capacity can be present in context of compassionate or cruel behavior.” (Italics mine)

 
Hannibal Lector in the Silence of the Lambs had empathy, a terribe empathy, and he used it to horrific advantage as he was able to intuit volumes about a victim, having gotten, as we say, into the person’s head. He also had no comscience, since he seems to have had no regrets, he perhaps even enjoyed having inflicted pain and horror upon the persons he murdered in such grotesque fashion. But he did so because he understood just how much pain he would be causing them…Note, later I thought about this and wondered if it is true that he actually could experience the semi-vicariousness of empathy and still be so willing to inflict torment on others.  It seems to me that if he truly understood — in the sense of feeling for and with the person — how he or she suffered, he could not possibly cause such pain. Also, is not implicit in the notion of empathy some indication of compassion? Well, you see how difficult the subject turns out to be!

 

To continue with others’ definitions: Carl Rogers wrote:  “To perceive the internal frame of reference of another with accuracy and with the emotional components and meanings which pertain thereto as if one were the person, but without ever losing the “as if” condition. Thus, it means to sense the hurt or the pleasure of another as he senses it and to perceive the causes thereof as he perceives them, but without ever losing the recognition that it is as if I were hurt or pleased and so forth.”

 
Khen Lampert (2005): “[Empathy] is what happens to us when we leave our own bodies…and find ourselves either momentarily or for a longer period of time in the mind of the other. We observe reality through her eyes, feel her emotions, share in her pain..”

 

 

There is something else that precedes empathy, which seems to be innate to the human species. Emotional contagion according to Wickipedia is “the tendency to catch and feel emotions that are similar to and influenced by those of others. One view developed by John Cacioppo of the underlying mechanism is that it represents a tendency to automatically mimic and synchronize facial expressions, vocalizations, postures, and movements with those of another person and, consequently, to converge emotionally.”

 

 

Sympathy or “feeling with” on the other hand, used to mean what empathy has now come to mean. “In Eng., almost a magical notion applied to it at first; e.g. in ref. to medicines that heal wounds when applied to a cloth stained with blood from the wound. Meaning “conformity of feelings” is from 1596; sense of “fellow feeling” is first attested 1662. Sympathize “to have fellow-feeling” is recorded from 1605. Sympathetic “sharing the feelings of another” is from 1718.”

 

 

Now, my concern is not actually Obama’s use of the word, though I frankly believe he simply meant “humanity, or humane spirit or humanism” or something like that. It is rather with my own ability to feel empathy that I am concerned. I know that many people get anxious when I tell them I fear I cannot feel empathy, because to them it marks me, or might if true, as somehow less than the warm, caring and compassionate human being they take me for. Now, how I feel being whatever it is, I firmly believe that what I wrote back in 1984 remains as true today as it ever was then, that love, and forgiveness and compassion are decisions of the will and acts that flow from them, rather than pure feeling-states. In fact, I venture to say that the feeling itself is less important, if important at all, than the act.

 

 

Take Mother Theresa for example. After early spiritual experiences, she apparently led a life almost entirely bereft of the feeling of God’s presence in her life, a state of bleak lack of further spiritual connection. She was close to despair more than once. Yet she came to be regarded as a saint for her acts of humble compassion and altruism and few ever knew how desperate she sometimes felt. So good was she seen to be, such an example of true Christian values, that she may soon be declared an official Saint of the Roman Catholic Church

 
There is absolutely no implied analogy here, nor any claim that my acts resemble those of Mother Theresa in any imaginable way. I mention her only as an extreme example of someone who was clearly an exemplar of compassionate goodness, but who nonetheless felt different on the inside from what people always assumed. This does not, and should not, detract from the value of her acts, nor their purity as acts of love and kindness and selflessness. No, in my book they only point them up the more, for being driven only by her will and her conscious decision to act on what she knew she had to do, rather than on the easy impetuosity of emotion. The decision she made to give her life to the poor and sick of Calcutta must have been hard; it is always easier to act when emotions run high. But that only makes the fact that she did, and continued to make that self-sacrificing act her life for decades afterwards, all the more breathtaking.

 

 

Now where was I? Mother Theresa seems to have felt empathy, though of course we cannot know this. All we know is that she acted compassionately and humbly and with extreme kindness always. We want to think she felt empathic, but have little evidence to prove it (or disprove it) in the end. I think this is why I brought her up. There is no comparison between us, of course, my problem being the evil I cause rather than the good she spread. However, I rely on a display of compassion to others, which is deceptive, as I am ashamed of my evil essence, do not in fact wish to pollute and contaminate as I do. I do not lie and tell people I am harmless, but I try to act like a good person, to be seen as empathic and sympathetic, always ready with an open ear and a willingness to listen at all hours of the day or night. I do good things, go out of my way for people, believe that it is the acts of love, of compassion that is important, because I must: I cannot feel either!

 

 

I do not know why this matters so much to me, but I believe it has a great deal less to do with empathy than with something far more selfish: I treat people as I know I want them to treat ME. I want to be listened to, I want to be assisted when I need help and so forth. So I do it for them, hoping someone else might also do so for me. Not in return, mind you. No, I know the world does not work that way. But perhaps, in some fashion, I might “earn it”? And if not, well, I did not deserve benign treatment anyway, being evil and malignant from the start…In short, I practice the golden rule, perhaps, but a very self-serving kind of one.

 
But the difference between this and empathy is huge. I ask a fundamental question that is in fact the reverse of the essential one asked in empathy: Not how would I feel if I were that person, if I were that person with such and such happening to me. But how would that person feel if she were I? It is a subtle point, a subtle distinction, but a crucial one. On the one hand a person shows a capacity for true empathy — how does that other person feel? — and on the other merely demonstrating that he can recognize a feeling state in another person because he has felt something similar in himself and he can imagine himself feeling that way again.

 
Many years ago, my father put together a book on the subject of empathy in which he, revealingly, made precisely this semantic error, defining empathy as “how would that person feel if he were I?” I tell you this only because I believe that my own lack of empathy stems from his, from his inability to teach me to feel what he himself cannot feel or understand. My mother was not particularly close to me growing up, because she felt that I somehow felt superior to her, which was far from the truth. Nevertheless she took into her head that notion and could not get it out (her worst accusation to me, when angry, was “You are just like your father..!”) with the result that I felt shut out a lot, forced not to feel or reveal any stray feelings that might still arise (Note: the bulk of my emotions had long since been squelched or shut off in my extreme effort not to be hurt or let anyone ever know they’d hurt me, or know anything else I felt, for that matter…) ** She did feel compassion and empathy, but nonetheless her effect on me in this respect was minimal, her effect on me was  hurtful. (Not in every way, mind you. She was a good mother in general, though she failed me in some crucial aspects.)

 
** Note that relations with both parents are vastly improved at present, that I love both deeply. I write of the past truthfully, but without rancor or even regret.

 

 

In any event, the result was that I had neither mother nor father to teach me either in words or by example or in action what empathy was, and it was my misfortune to be too shy and perhaps too ill already to meet or interact closely with any other adult who could substitute for them. The result of that, I fear, is that I cannot actually feel empathy, and without empathy I cannot feel real love. But hell, I don’t even feel affection, not really. I never ever feel like reaching out and putting a hand on anyone, or hugging them spontaneously…If I have ever done it, it has been stiffly and without feelings of desiring to or without “getting any good feelings,” only feeling reluctant and even repelled.

 
Did I say I could not feel affection. I must correct myself: I feel deeply affectionate for my cat Eemie, and this despite all my earlier avowals that I wanted to get rid of her for fear that I might kill her…I dunno why I said that. I think, no, I know it was because she was not sleeping alongside me anymore and was, for some odd reason, ignoring me, just sleeping in her spot behind the bookcase and eating secretly and sleeping at night by herself, so that I felt abandoned, and all she ever did to announce her presence was to knock things off the table when I was asleep, and break them!

 
But since I got out of the hospital in February, things have changed. Eemie is back to sleeping next to me, on top of me, or in between my feet. She crawls onto my lap when I am typing or reading and tries to get me to stop everything and pet her. And she ankle-dances around me all the time, as if she cannot bear not to be near me. In short, I no longer feel abandoned by her…

 

Which leads me to this: What can I do about all the above? Well, I do not know exactly. Dr O never quite believed, or never believed at all, that I felt neither empathy or love. I am not sure why…But I believe she was wrong not to do so. I think I feel it is unsafe to feel empathy for other humans. In that understanding, I have been visiting CompassionateCooks.com and listening to the podcast Food For Thought that comes out of that site. It is wonderful and informative and everyone should listen to it, for the nutritional information alone, even if you continue to eat animal flesh and secretions. After spending literally all weekend gorging on the 20-45 minute podcast episodes, I have decided that the cruelty-free vegan lifestyle is something I must try, that I can learn to feel empathy for animals first, and if I can do that, I will surely be able to feel it for humans. Because once I can really appreciate that pigs screaming when their throats are cut for slaughter, feel the same pain and fear that I would, and feel it with the empathy that might make it so painful to people, then I can’t imagine I won’t appreciate the pain/joy/sorrow etc that other human individuals may feel under the specific situations facing each. Maybe then I might have the capacity to feel affection and even love. I am 56. Can I hope for this before I die?

"While I breathe, I hope"

Bernadette Geyer

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