the same WAGBLOG…Don’t forget to come and visit! New posts will be up soon. For now, check out the bottom third of the “ALS, or Lou Gehrig’s Disease: A Confrontation” post as it is new as of this morning. (Look for it in the Archives page)
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?
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.
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.
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
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!
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…
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.
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
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
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.
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.
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.
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.
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!
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:
NEWS from CavanKerry Press
6 Horizon Road No. 2901 • Fort Lee, New Jersey 07024 • phone/fax 201.670.9065 • email@example.com
FOR IMMEDIATE RELEASE
Contact: Florenz Eisman — 201.670.9065
WE MAD CLIMB SHAKY LADDERS
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,
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
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: firstname.lastname@example.org or email@example.com
Papier mache goose is painted with acrylics both metallic and non-metallic and it stands (yes!) on a “bed of pebbles and dirt”.
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.
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.
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.
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?
I know that many people accept that 9/11 happened as we have been told it happened. They believe that “Osama bin Laden” was behind a diabolical plot by 19 hijackers to attack America, crashing planes into the world trade center and the pentagon, killing thousands and traumatizing the country for years. They believe that the heat of the jet plane fuel was hot enough to melt the steel of both world trade centers’ construction and pancake all floors one onto the next into a neat implosion at free fall speed, just by chance. They believe, in short, what the 9/11 Commission has seen fit to tell us — whatever it has told us, though it stopped telling us anything from the very moment that the towers started to collapse, as if the rest were irrelevant. Well, the following video is something you should watch, and I hope you will watch it all the way through its hour and some more minutes length. It is both unnerving and fascinating, though it will be deeply distressing to anyone who wants to believe in our government’s complete beneficence and goodness (who believes in that anymore anyway?)
If you need any more convincing, I will ask you a couple of questions: what happened to the wings of the plane that hit the pentagon? Yes, I know, the plane itself disappeared in the hole it made into the pentagon, and was “vaporized.” But there is no hole where the wings hit that I can see! So where are the wings? And do not tell me they fit into that hole as this was a BIG jet not a Cessna. Measure the space by the windows. No way could an entire jet and wings fit in that circular hole!
Question #2: What happened to the plane that fell from the sky in Pennsylvania? The one we have been told the passengers forced the pilot to crash rather than follow the hijackers’ orders? We have been told it vaporized upon impact. Say that again? It vaporized upon impact. But what are they saying? Even the Lockerbie crash, which included a mid-air explosion, produced bodies and large pieces of debris. WHERE are the plane and bodies in the PA crash? NOTHING vaporizes in a crash from an ordinary jet flight. You have to pass at very great speed through much atmosphere to vaporize, so only something such as an meteor from outer space might vaporize, but often does not We can only hope that a piece of satellite space debris will. So think about those two inconsistencies in the story we have been handed, and ask yourselves: what else should I be questioning.
Then take a look at the beginning of the film before you write it and me off altogether.
Here he is, a Goose, painted “my way” but only half-finished.
Dear Dr C:
Today when I left your office, I had to get natural bug spray as I walk at the State Park at least once a week and I usually forget to use it for the mosquitoes and ticks…Well, I went in, made a beeline for where I thought the display would be (having really no idea, I had to traverse the whole store before I found it, unfortunately, given that people there — as I told you — were talking and thinking about me and looking at me and wanting me not to buy or to buy certain things as usual…). ButI found it finally. Luckily there were not too many choices and the choice was made for me when I saw the word “local” and “made in Connecticut” as I knew that would please the “locavores” who were monitoring my purchase — a locavore being someone who eats only from local sources.
Despite the fact that it was the most expensive bug spray on the shelf I took the bottle and found the shortest line…No, actually, the line I stood in was the one where the woman before me actually looked at me without a frown, and in so doing gave me permission to stand behind her. I paid with my last ten dollars, though the cashier made everyone wait, impatiently I am sure, because he didn’t believe it cost $9.99 and he “didn’t want to overcharge me.” Hah!
Finally, I emerged from the store safely, shouldered my bag, and headed for the car. But as I stepped near the curb, a red Mini- Cooper drove past me and I understood immediately that this was your car, Dr C, and that you recognized me coming from Whole Foods. This seems entirely reasonable to me, since there was not another patient waiting in the waiting room when I left, so it seems likely that you were heading elsewhere after I departed…And suddenly a red Mini-Cooper seemed only rightly and properly “your car.” But somehow this conjunction boded very ill to me and I immediately became apprehensive, or what my sister, Dr O and my friend Josephine all called paranoid.
On one level I see what they were saying. But on the most profound level, I KNOW that what I know is truer than their objective observations. I was/am certain beyond the faintest doubtful smudge that you are in with Them, capital T. Who are They? They are the osteopaths of H_____, who have had a conspiracy against me for years.
Lynnie – Carolyn — told me I should talk about this with you, so here you are: this is only one of the big problems I have with you at the moment. Another one, which may be insurmountable in the end, is that I want to know why you sit where you do, I mean, way across the room from me. I do not want you to change. Do not suddenly get up and sit elsewhere. I just wonder why your natural choice is to sit, what is it, 10 feet away? Do I, as I fear, repell you? (If yes, is that because of the Osteopaths and what they have shared with you?) Do you fear me? Fear something? I can barely see you. I feel like you cannot see me, which is more to the point.
I need…I need…Oh, Lynnie tells me to do something different from what I “usually do” – be brave enough to ask questions when I should then sit still and listen to the answers, and ask for clarification if I still haven’t understood. To discuss what I feel rather than letting my paranoia get the best of me, not simply accept it and go with it full speed ahead. But I do not know HOW to fight the absolute certainty that things are going on, nor the special knowledge that I have. Zyprexa helped more than anything, but that is utterly unacceptable. Nothing else has made a dent. Except possibly the 35mg of Abilify, which I went back on tonight, just in case…We’ll see.
Enough is enough. I hope you don’t mind that I wrote this. I didn’t want to leave a message on your phone nor ask to have you call me. In fact, though, I may keep this until the 13th and give it to you then, as I am afraid you might consider it a burden to read a letter “off duty.”
Now, that is what I wrote him, after the incident recounted in the letter, but in fact, I have found and called an APRN therapist, a female, who sounds and “feels” more to my liking, though I have not yet met her. Maybe I simply get on better with women than men? But that is not true, as I have had male docs in the hospital I preferred over the female therapists by far. I think, as I discussed it with Dr O, I found Dr C not so warm nor “safe” in the end, nor responsive to what I said. I had trouble talking with him, because he did not actually talk with me, only listened, which is not what I want in a psychiatrist. I do not want that sort of “therapy” — I don’t want to delve into my past or my inner feelings. I have a hard enough time dealing each week with what is happening in my life, let alone the deepest darkest secrets that my mind hides from me and in which I have no interest…My goals in therapy are mainly two: to gain some self-esteem and self-confidence, which despite how I may sound here, I have almost none of, and two, to somehow, somehow, if possible, learn how to cope with and not be so chronically paranoid. Of course, those were Dr O’s aims with me all along, I imagine. But perhaps if I myself commit to them and learn how to work at them, more headway can be made. I sort of think, now that I know what paranoia is and how to recognize it, finally, that I need concrete exercises to practice how not to succumb to my tendency toward it. Ditto self-esteem, which tendency is just as strong, if not stronger, since it produces as much paranoia as grandiosity does. I cannot imagine what form such exercises might take, but I can imagine that they exist. I cannot be the first person to need them, after all.
WE MAD is at the printers but apparently it takes a month to come out from there, so it won’t be finished until May 28th! Geeze, and I thought it would take a week at most…This is going so slow. I cannot see how they could possibly have gotten the book out in February, even had I not been ill and taken a “month off”. At best they would have gotten the book out in April! I should have known that anything a publisher says with a deadline has to be taken with a grain of salt. But I cannot seem to get that through my thick skull and so I still keep on expecting things to be done on time, and keep meeting deadlines that no one else ever does.
I’m in the middle of writing a poem when the phone rings. I read Joe’s number off the caller ID. It’s 9:30 A.M. I set aside my poem and push the button for speaker phone. It’s not that I don’t want to talk, but I know the shortest call will take at least a half hour and most likely more. I am not ordinarily a telephone person. If I had my druthers I’d take email any day, but Joe has no choice.
“Hi, Joe,” I say, carrying the phone into my erstwhile bedroom, now my art studio. “What’s up?” I push the button for speaker phone and set the handset on the table near my newest project, the two and a half foot tall papier-mâché goose that is my first commission. Picking up a brush, I paint while I wait for his reply. Changing gears is always good for my brain and now that I’ve made the change, I find I’m happy to talk.
A distant ka-chunk, ka-chunk, ka-chunk comes back, a pause, then Joe says, “Pam. Pam. Pam.” It’s actually a computer voice named “Fred” (or something) and it is not so different from Hal in the movie 2001, or more to the point, Stephen Hawkings. But it’s one with which I have become terribly familiar. If I did not have a single mini-tape of Joe and I talking in 2003 about Sister Wendy’s art criticism and what we think about a painting by Rousseau, I would have nothing by which to recall his old voice. As it is, I dominate the tape. Closer to the machine and apparently hypomanic, time after time I interrupt Joe in my enthusiasm, even when he does say something. But I can hear him in the background and when I deign to let him, he speaks fluently and without impediment.
The tape was made three years before everything changed, before slurring in his voice turned out to be the first sign that he had amyotrophic lateral sclerosis, otherwise known as Lou Gehrig’s Disease.
There’s a moment like a car-wreck, when your heart is crushed, no air-bag to cushion bad news. It happened like this:
My wrists bandaged from the day before, I was sitting on my hospital bed in the room without any furniture, only an aide guarding the doorway, when several people walked right in: my twin sister Lynnie, my psychiatrist, and the hospital social worker. My first thought about them was, A whole committee? What are they doing here? My second thought was, Uh, oh, nothing good can come from this! The fact that Lynnie was there struck me as particularly ominous; she had more power over me than the other two combined. I feared there were to be dire consequences to my previous day’s act of desperation: was I to be sent to the State Hospital, assigned a conservator, forced to have more shock treatments? Each of those things had occurred before and I could not bear them a second time.
I sat forward, my arms crossed protectively against my chest. “Why is Lynnie here?” I muttered to Dr O, whom I thought of as my only hope and protection, though that hope was fading fast. She didn’t seem to hear or understand. I frowned. The Committee stood, silent, around my bed, towering over me, or so it felt. I cowered. I waited for the blow of some hammer I didn’t want to fall. After several seconds, I couldn’t bear it. “What do you want?!” I finally snapped. “I’m not going to–”
“It’s Joe, Pam,” someone said with infinite gentleness.
“Joe?” You mean this was not about me but about my best friend? Suddenly I understood. Hadn’t I witnessed with concern as Joe’s voice became increasingly garbled over the past 6 months? He had several times choked on food. No one could seem to figure out what was wrong. He’d had test after test. I started looking things up on the internet. I had come across some constellations of symptoms that seemed to match, but the possibilities were simply too dire to contemplate…
“He has Lou Gehrig’s disease.” My heart plummeted; it was as bad as I’d feared. But why call it by what was practically a euphemism? Did they think I’d never heard of Amyotrophic Lateral Sclerosis, motor neuron disease, that I didn’t know what it was? I knew what was in store: with a mind remaining intact and progressive paralysis of every single skeletal muscle, ALS was inevitably fatal.
There’s a moment like a car-wreck. Your heart mangled and torn, no airbag can pillow the punch. No, it was not I after all, but my best friend, dying, the news like a gun-crack at silent dawn. A wail burst from me. I pounded the bed and I hit myself. “I knew it, I knew it.” And I had known, all along, but feared if I spoke the words the terrible truth would become true: somehow I knew it was I who had dealt him such deuces…
Added in Aug 2009:
That night, after the Committee left me in the care of aides still sitting one to one with me, I went to sleep alone in the room cleared of everything but my bed and nightstand and only my journal to write in. I had eaten little dinner, and spoken to no one that evening, only sat numb and silent, or writing by myself in my room, saying nothing to a soul about Joe or myself, about how I felt about either of us… But I was thinking about us, about how Joe, the dear man who was my most loyal and generous and deoted friend, must have felt when he got the news, wondering how he was feeling now…And I wondered how he dealt with it…I could hardly bear the thought of seeing him now, now that he was dying. Things felt to me almost unbearable, unbearably changed.
At the same time, I felt lonely beyond speaking of it to anyone. Despite all the commotion my temper tantrums caused there, and they did, I was alone most of the time trying in vain to control the self they believed i willfully chose not to…In fact I (Oh, I have been through this a million times, and it still rankles, but no more. It doesn’t matter what they thought. They were wrong and if they didn’t know it or care, why should I?) Anyhow, I felt sad suddenly, not just for Joe, but for all of us, Joe, me, and Cy and Lynn as well, who were elderly and Lynn was very frail after having caught pneumonia in Israel sometime earlier (was it just that January in fact?). I cried a little, quietly in bed, until I finally went to sleep. But I slept shakily despite the Xyrem and kept waking, thinking I heard the aides talking about me…which likely they would not be doing, since what would they give a damn about me for? The book, that trusty old book the Four Agreements has finally pounded that into my head: They had their own lives, their own problems… my losing my best friend to ALS, or at least his body being given over to that terrible illness, was surely not their issue, or their sorrow, so why would they care about me or talk about me? (You see, I know that now, but try to convince me of that then and Id have sworn to you you were crazy, of COURSE everyone was thinking about and talking about me! It was clear as the sound of the traffic on the highway! — which come to think of it, might not have been audible either, though I thought it was, all the time..)
Finally, I guess no one wanted to talk to me, everyone being afraid of me, so they enlisted the Jewish Chaplain to come and counsel me, figuring if they could hear me cry, if she could “get me to cry” they would know I was all right…and that they would not worry about me. I know that because — oh, what the hell does it matter? She was very nice, the chaplain, and very ecumenical, and I was gad to hear it as I would not have been happy with any religious rant…
When Joe did visit the next day, he looked great, smiling and almost joyful. It was weird. But he said that he felt fine, and he viewed the illness as a great adventure, even the propest of dying didn’t faze him. Besides he said, he was on the ten year plan…He figured if he could last three years, outliving expectations, then live five, he’d be good for the unheard of ten, maybe fifteen, or even twenty, who knows….And I believed him, just listening to him tell me his plans.
You know, I think his very optimism has carried him far. See how is he is now, but he hasn’t gotten pneumonia a second time, quite despite the ICU’s predictions of constant recurrences and his making an early decision to die…No, he had one infection with C. dificilis, but after that, which was cured, despite its reputation for hanging on and on, he seems to have been quite well, and very well taken care of. NO bed sores for one, which to my mind indicates excellent care of someone who hasn’t left his bed or his supine position for more than two years…Which brings me to the case in point: he has made it three years! He was diagnosed in August of 2006, after havaing been ill since at least January. And it is now Aug 2009. So that makes it Three years he has survived this crummy disease. I asked him how his movement was and he was able to make some shaking movements so he has some muscle fibers yet…All is NOT as “gone” as I’d thought! He even has a twitch or two in his fingers…So he could use switches for all sorts of things, if he would let the staff know he had the use of those muscles. But he doesn’t, for some reason. When tested, he lies completely still and doesn’t let on that a single fiber remains active. Its as though he doesn’t want to move a muscle fiber any more, doesn’t want to live, physically, only wants to live in his mind…Forgive me for saying this, but it felt that way from the moment he was hospitalized. He simply abdicated moving once he got pneumonia, he stopped fighting and surrendered completely.
Why do I say that? Well, he never again tried to walk or move his arms or do anything that he could do before he got ill, and I think he probably could have done them or been rehab’d to doing them, had he simply wanted to. But I think being sent to the Hospital where he would be on a vent and trache for the rest of his life gave him permission to take on the role of paralyzed patient early, and he saw no other way…Perhaps he didn’t know that there would be other freedoms, like the step down unit and going outside with a portable ventilator, if he had tried harder to use the muscles he still had (after all, even with pneumonia he had been walking and driving and doing everything a non-sick person does, though with increasing weakness and difficulty. He had not yet begun to use a cane and had only just caved to getting orthotics made for his ankles…). I know he was terrified of being wheeled into the dayroom and left there to do nothing all day but be captie audience for soap operas and cartoons, but he wasn’t even trying to let anyone know he had muscles for them to train, or rehabilitate….so no wonder no PT therapists came for him!
Oh well, it was his choice, unconscious or not. It is all water under the bridge now, I guess. I just feel bad that he won’t even now let anyone know that he has this remaining ability to, say, shrug that could be useful…I have to beg him to blink his eyes to say yes, when we are using the alphabet board, but it seems to me that there would be other easier ways to communicate with us without the ERICA, if he would admit to the SLP (Speech-Language Pathologist) that he had muscles they could use to arrange something, hook him up to something.
Enough of this for now. I have a headache and this ain’t helping nothing.
Before I relate the tale of my trip to DC I hasten to add one addendum to the discussion below on TLE: Dr C said absolutely nothing about schizophrenia and TLE and possible misdiagnosis. Nothing whatsoever. ALL he mentioned was that my ECT apparently triggered — he used the word kindled — classic TLE in my brain, as evidenced by the pattern of onset of the olfactory hallucinations and their response to treatment. ALL the rest of my theorizing about schizophrenia and TLE has come from my own conjectures and readings that have spun off from that one statement and not from a single thing he said or implied. Please understand this. He may not have meant and may never bring up the subject at all…The question remains, Will I?
Now then, about my solo flight, my DC adventure:
On Wednesday, Josephine drove me to New Haven and I took the high speed train, the Acela – going at a rather low rate of speed it seemed to me, most of the way – to Washington DC. The trip down was uneventful, except that in my anxiety to get a seat, I completely forgot to tip the porter who helped me get my bag down and up the flights of stairs in the station (the escalator wasn’t working). I had a five dollar bill in my pocket all ready for him but at the last minute plum forgot…for which I felt guilty the entire journey right ip until I got back into Jo’s car at the end of it…and even now, a twinge remains.
The four and a half hours passed quickly as I had to review the new edits the copy editor had made. It wasn’t announced that we had arrived. People just stood and started getting their things from the overhead rack. I had to ask if we were in Washington. Finally, off the train, I followed where everyone else seemed to be going, managing not to go near the uniforms with the dog, though it occurred to me that maybe it was where I was supposed to go, because I wasn’t going where the cars were, was i? Luckily just then, Sara waved to me from the opposite door , and I saw and recognized her so that misstep was averted…It occurred to me, however, that we have become like a police state, what with armed guards and police dogs standing around in train stations, only supposedly to protect us (after all, they tell you DO NOT TOUCH THE DOG!)
That first night we spent just getting caught up on Sara’s recent travels as she is head of an “abroad program” at a university there. Then the next day, I slept till 9 and she went off to work. At noon I was picked up by a friend of Sara’s who drove me, with a few mishaps, to the train again, for my trip to MD to talk to a senior psychology class at a small, private college in a town about an hour outside of Baltimore. During the drive to the school, I began to feel weird — thought it was low blood sugar or simple sleepiness– and asked if we could get some coffee once we got there. I felt too fuzzy to even pay for anything, couldn’t think straight to talk, just eating to prevent myself from fainting. Finally, it was time to go to the class, and so I pulled myself together, took a last bite from my muffin and threw the rest of coffee and muffin away.
In the class I gave my talk and did the Q and A with nothing untoward happening, except that I had to stop when the feelings reoccurred with fatigue near the end, at around 4:15 (the class ended at 4:30 so I made it almost the whole time). All the questions were really good, made me think. The only one I felt I did not do justice to was the one about Lynnie and whether or not she needed therapy and medication (!). If only they knew her and Sal…But in any event, I ought to have explained how psychiatrists are ordinary human beings with ordinary human emotions and flaws and faults, not superhumans, and they get angry and jealous and pissed off etc just as anyone else does. Jealousy in and of itself is not an illness, just an uncomfortable feeling that I know Lynnie has dealt with in her own professional and personal therapy over the years (as I pointed out all psychiatrists see their own therapists first). As for medication, she’d be the first to tell anyone she swears by it, and would not want to do without it!
After that class, I was blitzed completely, and could barely sit up straight in the car heading back to Baltimore and the train, and then my head blossomed into a migraine on the train. When I met Sara in the station again in DC I was utterly exhausted. I ate a little supper but basically fell asleep by 9pm and slept through until 9am.
Friday we took it easy. We drove around the Capitol area and stopped to walk into the Supreme Court, and walk around the White House. But we didn’t spend a great deal of time anywhere as the light was a brilliant blinding white and the temperature pushing 75°F. Also, that night I had a poetry reading scheduled at the Potter’s House Sounds of Hope gathering
The Potter’s House in DC — a bookstore and home-cooked-food restaurant, with a Let’s All Help Each Other theme…It was great to go in the door and find a seat at the table and know every, or nearly every song sung. I wasn’t scheduled until the last of the night, and was afraid everyone would leave before then…and they almost did until the MC asked some to stay for “dessert” ie me. So I finally had my reading and I think they liked my stuff…Hope they did, I didn’t hold back or read only easy things at any rate…
THe rest of the visit went supremely well, as Sara and I get along great. We ate in an Ethiopian restaurant one night, and at a Spanish open air market for lunch the next day. Only bad aspect of the visit, and it could not be helped, was that I brought a cold with me all unawares, so I was almost, but not quite, miserable the whole time. In point of fact, I was miserable only ONE night of the four, and miserable not a single day there, thanks to Sara’s good company and hospitality, plenty of kleenex and good food, with no pressure at all to do anything (once the class was over with — which was MY pressure entirely).
All in all, a great trip. Some paranoia developed on trainride home, with feelings/suspicions/knowledge that the people who sat down next to me in the Acela were accusing me of having stolen one of their tickets…to the point that I started talking to myself and had to get all my things and move seats to somewhere I felt more comfortable. Nowhere really felt comfortable after that, though, since everyone was looking at my book and what I was reading, so I had to switch to a harmless magazine. Finally the guy sitting in the single “disabled” seat at the back of the car got off at Grand Central so I quickly snagged that, having a disabled-discounted ticket myself. Things ought to have calmed then, only then I thought people were looking at me and wondering, Why is she sitting there, she doesn’t look very disabled to me! I was very glad to detrain at New Haven I will tell you that. But how was I to get my heavy “carry on” wheeled bag down the high stairs at the station? No way was I able to lug it myself, especially not carrying two other bags, and one being my purse/tote bag I could not see leaving it alone while I took the bag by itself.
Just then a burly older man, lifting his own carry-on in one hand, stopped and said, Let me get that for you. “Oh, would you? Thank you so very much!” I replied. Without a word, he took my bag by the vertical handle and carried it swiftly down the thirty of more steps to the bottom then walked away before I could thank him again. Oh, what a lovely gesture. I was more relieved than I could say, though it was easy enough for him, and I daresay he is used to doing it. I was very glad to have been today’s recipient of his gallantry! The rest of the way was easy, as I could draw the bag on its wheels and take the escalator the rest of the way. I swear I don’t know how they get away with making these trains to inaccessible to the handicapped. They are practically inaccessible to any but the very young and strong, so far as that goes…And nearly every station had that long staircase leading to the platform, except for, say, DC, which is flat from parking lot to train, and even minus a step getting onto the train itself.
Welp, that was my much anticipated, much worried about adventure and I’d say it went just swimmingly, despite cold and despite migraine and intense fatigue at the middle to the end of every day. One thing I did learn that was helpful was that eating three meals a day was good for me, rather than letting myself forget to eat until late in the evening and then cramming down the calories. Today I even tried to follow the pattern I did with Sara, and started the day with a healthy brakfast of fruit, cereal and yogurt. Then I did what the visiting nurse has suggested for many many months: I set a timer to remind me of lunchtime: I had an onion roll and dried fruit at one o’clock. At 6:00pm or so I plan to have…well, some mix of green beans and onio ns, cheese and soymilk plus strawberries and black berries with yogurt for dessert. Mainly because that is all I have at the moment. Or I will have Irish oatmeal made with soymilk, plus dessert, which would be a lot easier! I hope I can keep this regimen up, as it cannot but help my stamina, if it does nothing else.
In my further reading on TLE I have learned that while “TLE hallucinations” can be ecstatic visions or the sight of threatening people or actually hearing voices, usually they are of brightly colored lights or visual distortions, like objects appearing larger or smaller than usual, hearing music, feeling insects running under one’s skin etc. In addition, there is the awareness that these are hallucinations, though not always. A personality seems to be associated with TLE, some people think, though it is not clear to me how established this is as fact. And some with TLE and without it claim that creativity is directly related to it. Hypergraphia, the compulsion to write, write, write is definitely associated with TLE, along with a compulsion to draw or do art or think/talk about religious subjects. Heightened emotional state but reduced sex drive. Something called “stickiness” is described, which I construe as a kind of tendency to glom onto a person or to exhibit an extreme loyalty. Also, there is seen irritability and gross personality change, rages, a tendency to fly off the handle or perform outrageous acts like stripping in public etc.
In TLE you can have feelings of euphoria and floating as much as feelings of impending doom. A feeling of “rising into something” or of something rising through one’s body is a common concomitant of a TLE seizure or aura. An indescribable feeling according to many. And you can have psychosis, chronic or acute.
interestingly, while EEG is notoriously poor at picking up TLE, there are often punctate signal hyperintensities (precisely the abnormalities I have had at least since Y2K) seen on MRI in those with TLE in the book I am reading — SEIZED, by Eva LaPlante.
Now I do not want to jump the gun, because too many of my symptoms have been chronic and disparate, not following a single pattern of seizure, whereas at least one authority claims that once you have one seizure, all others look similar. Indeed, while you might say that Grey Crinkled Paper arose from a seizure, and the jacksonian seizure with Novocaine were definite, and too the feelings of impending doom were also seizure activity while I was taking Clozaril and other antipsychotic medications, the others, with different patterns yet, could not have been,since they were more varied even than those. The olfactory hallucinations had to have been seizure associated too, but then where does it all stop, and where does the notion that one seizure sets the pattern for all others go?
And yet even conservatively I myself would count all those instances as seizures even if I were not going to count anything else as seizure-related right now…So what to make of them, and the fact that ALL were so distinct and different from one another:?
Does it make the whole thing, the whole illness over all TLE or schizophrenia? Can you in fact have both, or does having TLE suggest that the schizophrenia was a misdiagnosis all along? And how does one know? Certainly, I have one trait that points towards the TLE diagnosis: I do well inbetween “attacks” of either illness, and seem to have not suffered any deterioration in brain function cognitively. Not massively. Though my memory and such is faulty, that is often the case in TLE itself!
I don’t have the slightest idea, but I suppose I will find out as the weeks go on and I continue to discuss it with Dr C, as I anticipate I will. I do plan to see him once Dr O leaves… I liked him enough to do so at any rate, and I liked this idea enough too, to want to pursue it too. I t will be very interesting to find out what happens, where it leads…If it redefines me entirely, I wonder how I will feel or deal with it?