I am not sure what to think of this video. I certainly did not give permission for it to be used, nor did I approve of the final product. But I would welcome all opinions, should anyone wish to share. Please do not click on Like or Dislike buttons to give opinions. That only tells me you dislike my posting it, not the video itself…But maybe I am too sensitive.
I see that it will not insert directly here so I am placing the link to it here instead.
HOW TO READ A POEM: BEGINNER’S MANUAL
First, forget everything you have learned,
that poetry is difficult,
that it cannot be appreciated by the likes of you,
with your high school equivalency diploma
and steel-tipped boots,
your white collar misunderstandings.
Do not assume meanings hidden from you:
the best poems mean what they say and say it.
To read poetry requires only courage
enough to leap from the edge
and trust.
Treat a poem like dirt,
humus rich and heavy from the garden.
Later on it will become the fat tomatoes
and golden squash piled high upon your kitchen table.
As for the update, well, I sent most of the important material from which I derived the last blog post about the restraints episode to the Office of Protection and Advocacy and by the afternoon of that very same day, I got a call from them telling me that they were going to do an investigation! Not maybe, but yes. This was quite a surprise. I did not expect to hear from them so soon, much less so definitively. They do not take every case after all, but pick and choose from the many complaints that come their way. I have run into so many roadblocks that I was afraid that there too I would be shoved aside for other more important matters. But no, I think they too found this matter outrageous.
So I will keep you posted as to what happens. They want access to my chart, which I will give them, but I will also fax them the pages from my journal too, as I want them to have contradictory accounts to counter what the “official” record says. Though that says enough that is not quite legal by itself.
I have been cleaning my apartment for 2 days and it is still a wreck, but I need to frame all my artwork for a show I will be doing in early November, at OpenStudio Hartford and I cannot do anything until I have space in my apartment. It is getting better, at least there are “paths” to walk through! But there is still a lot to be done, and I am already very tired of cleaning. How on earth do I make such an atomic mess of things so often? So needless to say I cannot write much today, but I did want to let you know of this latest development.
You know what they say, that happiness is not to be found in how much money you have or in the things you own or can buy, nor even in how many friends surround you or how many people love you. The poem about Richard Cory, upon which Simon and Garfunkel (remember them?) based a once well-known song, just about says it all:
RICHARD CORY
By Edwin Arlington Robinson
Whenever Richard Cory went down town,
We people on the pavement looked at him:
He was a gentleman from sole to crown,
Clean-favoured and imperially slim.
And he was always quietly arrayed,
And he was always human when he talked;
But still he fluttered pulses when he said,
“Good Morning!” and he glittered when he walked.
And he was rich, yes, richer than a king,
And admirably schooled in every grace:
In fine — we thought that he was everything
To make us wish that we were in his place.
So on we worked and waited for the light,
And went without the meat and cursed the bread,
And Richard Cory, one calm summer night,
Went home and put a bullet in his head.
We all know it’s true, both the cautionary tale of Richard Cory, and that money doesn’t buy happiness. At least we know it with the left sides of our brains. Alas, this is still the side that does the intellectual calculations of how many friends or about the nice car we’ll need to have before we will finally be happy. And if we didn’t know it before, all we have to do is listen to the news because nearly every week it seems there is yet another story about a celebrity who seemed to have it all – money, beauty, acclaim, adoring fans – who ended up destroying himself on drugs and alcohol or who committed suicide (“no one had any idea she was so depressed…”) at the height of her career.
But if money and things and friends who love you don’t offer a path to happiness, what does? Is there a map, a guide, an instruction manual, a recipe? One look at the number of books on the market purporting to teach you how to be happy tells me there are lots of people making lots of money trying to tell you they have the secret. And given the number of books they sell, an awful lot of people out there are desperate enough to spring for them. If you have bought any of these books and found their secrets to be The Secret, or even to be one effective secret that worked for you, I would love to hear about it. Truly, I am not being sarcastic. I am a writer, and I believe that writers are for the most part sincere. Not all of them, mind you, but most of them. And so when a writer writes a book promising happiness, I believe that he or she probably believes it. I just don’t happen to think most of it ends up being effective.
But maybe it’s me, I dunno.
Let me explain. I have had many, many struggles with self-acceptance and self-regard over my lifetime (I am 58 years old at this writing, so you can see that I am far from young) and I assure you that I am far from winning the battle. My self-esteem is very low. So low in fact that I hesitate to say more… But at any rate, when I say my self, I mean my inner self, my soul, my – well, whatever it is that one might want to distinguish from the “self-that-produces,” the working self. What I mean is, I know that I write well, and I am learning to become a better artist as the days go on. But those skills have not fundamentally affected my self-esteem, only my level of confidence. And there’s a big difference between the two. I have a lot more confidence in my abilities than I did years ago, partly due to greater skill and long experience – though only in my writing — and partly due to caring less what others think, because there is less at stake at my age. My self-esteem on the other hand remains utterly unconnected to this, and largely unaffected by it. Whether or not I love or utterly despise myself has little or no bearing at all on whether or not I am able to write or paint or draw well. All it might do is affect what I write well or paint or draw about.
And I can be proud of my poem or essay or my drawing, proud of what I produced, without that having the least effect on how much I fundamentally love or hate myself.
But, and here is the thing: I do not believe that hating or loving yourself matters in the search for happiness. Or at any rate, it is not the sine qua non, the primary requirement before you can be happy. In fact, I think in the happiness department, self-regard is over-rated. It is not that I want other people to feel badly about themselves so much as that oddly enough I think it has little to do with whether or not one can find happiness.
Maybe I should amend the word happiness to contentment. I do not like the first word all that much, as it smacks of little yellow smilie faces and balloons and other inanities. Happiness is decidedly not inane, but our emphasis on the importance of it has made it seem so. Contentment as a word and concept has been all but forgotten in the rush towards the seemingly bigger motherlode of happiness.
So let’s switch gears and say that we are on the search for contentment, which also is not found in money or friends or in being loved by others. So where do I think you can find contentment? (Clearly I write this with my own agenda in mind…why else write it at all?)
I think contentment – indeed, even happiness – does come from within, and it starts with forgiveness.
Forgiveness? Why that of all things, you ask? It seems like so many other emotions and “emotional acts” should be more important – like loving yourself and others and being compassionate etc. But I assure you that without forgiveness, you can have and be and do none of those.
Kindness and generosity were always supreme values to me, even when I was a child. It hurt me inside to see anyone going without something that I had it in my power to give them. But it was many years before I understood that forgiveness was also a crucial value, that it not only partakes of both compassion and generosity but presupposes both. Not only is forgiveness an act of kindness but it is freely given and therefore an act of extreme generosity. You cannot force forgiveness any more than you can force a “sincere apology” despite what our parents might have thought when they made us “say you are sorry and you better sound like you mean it.”
Okay, so forgiveness is critical for contentment, maybe, but forgive what or whom? And why? First of all, everyone is scarred by their pasts, everyone has baggage from childhood. In fact, while some people had more than less happy childhoods, everyone has bad memories that they cannot shake, that have stayed with them and in effect traumatized them. Second, scars are simply an unavoidable fact of life. You can’t get through life without them, and childhood I’m afraid is a rough and tumble place where you pick up the bulk of them. Three, who “caused” our childhoods, for most of us? Answer: our parents, or whoever took the place of our parents. That is why our first job is to forgive them. I’m serious, and while we are at it, we have to forgive childhood itself, all of it. It doesn’t matter what happened, or how terrible, it really doesn’t. If you do not forgive it, if you do not forgive everything that happened to you, you cannot let your childhood go and get on with the present, which is where happiness, where contentment lies. Contentment is not in the past, that much we know, and no one knows a single thing about the future. But if you cannot forgive the past, and especially the childhood where you got all those scars you carry around now, you will never move beyond it to experience an undefiled present.
Look, I believe that forgiveness comes from inside the brain, but heals a place in the brain we like to call the heart. And I believe that forgiveness is more healing for the person who forgives than the forgiven. So I wish you could forgive all those people who harmed you too. All the people, relatives, friends, lovers, rapists, molesters, thiefs, betrayers and more…because I truly believe it would be good for you and for your heart. But I think it is essential at a minimum if you want to be happy to forgive your childhood, the entire experience of it, not the individuals or the single events, just the fact that you were a child and had to go through it. Once you can forgive it, you see, you can let it go just as it has and be gone.
After you have forgiven your parents or parent-stand-ins, and your childhood, you are well on your way. Many people would say that this is a step towards self-acceptance here, and that is how you reach happiness, but whether it is or not, is not important to me. In some ways, self-acceptance is not what I am after so much as acceptance of the world, both of the past and of the present. And when I say “acceptance” I mean such utter acceptance of it that you can forgive it. Because only when you can forgive, so I believe, can you really accept the world. And when you can accept and forgive the world both past and present, then you can be happy.
( I realize that I have put my poem below on this blog before, but clearly it belongs here, though it is for a second time. And dang, I do not understand why this program will not allow me to get it single spaced!)
In truth, of the following poems one is not really new, since it was published some years ago in a volume called “Three Poets” (no longer available) put out by the Tunxis Poetry Review of Tunxis Community College in Connecticut. But I have always liked it. I will be including both in my second poetry collection, so I am putting them here as a kind of enticement, even though neither is about mental illness and/or schizophrenia. (Those I hope to “pre-publish” before the book is out…maybe…)
BTW: A few notes for clarity and in case you are not familiar with a few words, forgive me: “lieder” means Romantic songs, in German, “Bawds” comes from the same root as “bawdy” and means, essentially, “bawdy women”, “a water strider” is an insect… “la nostalgie de la boue” translates as “a longing to be back in the mud.” Also, I am sorry that I could not space it better, but the cut and paste option did not allow it.
CONSIDER THE BULLFROG
who
night and day
belches “jug-o-rum”
to a teetotaling
bog; whose noisy
lieder of drink
and bawds last all
summer long;
who nibbles
asterisks
of water striders
dimpling the surface
of the black pond
and ensnares
tangy damselflies
with the quick ribbon
of his tongue;
who after all
is not a Prince
in disguise; who
suffers himself to be
pithed for science;
who sculls
through sweet
mud in la nostalgie
de la boue; who
is Frog among frogs;
who needs no god;
who does not know
he will die.
The other poem, which is new but which I do not believe I will publish before I publish the book, is this one, a “nature poem” of a sort. It was written for my writing group “prompt” on the word “song or singing” as I recall…
“For the listener, who listens in the snow...Wallace Stevens
In those days I was always cold
as I had been a long time, mindful of winter
even at the solstice of my high summer days
always, always the crumb and crust of loss
and near-loss of everything held dear
before the saison d’enfers and the ice to come
There was always the wind
There was the wind making music,
and I, at one with the quirky stir of air
bowing the suppliant trees
bowing the branches of those trees for the sound
of songs long held in their wood
Changes change us: rings of birth, death, another season
and we hold on for nothing and no reason
but to sing.
Joe has rallied some, yes! yet again, though he is clearly in a terminal decline. Last Thursday, a week ago, we thought he might survive only a day or two, as he was in and out of consciousness and looked frankly terrible. But the following Saturday he was surprisingly alert again, and so it goes.
I was unable to visit him until yesterday, due to sheer exhaustion, and an inability to get a ride there so that I didn’t have to drive myself in an unsafe state. But when I saw him — that is, Friday — he was actually able to manage a bit of a smile, and appeared happy to see me. His first words in fact, spelled out on the letter board, were not about him but instead were, “You are beautiful” — what a sweetheart! When I asked him how he was, he spelled only that he was tired. He did tell me that he had trouble hearing, and when I offered to get the nurse to clean out his ear and fix the towel that blocked his other ear, he was grateful. But we couldn’t talk long as he grew weary after a scant twenty minutes. I offered to cut my visit short and return on Monday. That turns out to be easier on both of us anyhow as the letterboard is difficult for each of us in different ways.
joe’s level of consciousness remains variable. The irreparable and growing leak in his stoma (a “stoma” literally means a hole, which in this case is the hole in his throat and trachea that holds the tube through which air flows from the machine into his lungs) means that his O2 — oxygen — levels vary tremendously. The fact that he is also very “tired” is also an indication of lowered O2 concentration, though he may not understand this.
He did as I reported last time agree to the DNR designation (Dr O, with whom I have been in touch, because she was so helpful with Joe early in his illness, told me that this is now called AND — Allow Natural Death). I do not think he completely understood its meaning, though, as he asked me two days later. I had to tell him it meant no heroic measures “like cracking his chest and massaging his heart” to make it truly clear to him, even though, if true, it also sounds a little extreme…After all, artificial ventilation is already a heroic measure!
As it is, unless the fistula forms (in his case a pathological kind of tube or passageway) forms between an artery that branches off of his aorta, and his weakened tracheal walls, which would cause nearly immediate death (with hopefully immediate unconsciousness without suffocation or any “drowning in his own blood” sensation), it looks like he will die of slow oxygen depletion and carbon dioxide build up. This would probably be the best way…Although his cousin tells horror stories about “hypercapnia” I think he has been researching traumatic and acute cases of such carbon dioxide excess and not the slowly developing kind that Joe is experiencing. From all I muyself have read about ALS and respiratory failure, Joe’s dying should be painless and “easy.”. Especially if he only gets more and more tired and simply falls asleep…
I have been very weepy about this, esp when Joe has not been able to be very alert and it looked like death was near. But on Friday though he was “tired” he actually spent more time asking me how I was doing than talking about himself…He “talks” mind you, by spelling via the letterboard. Which means that he looks at me to say yes, and away to say no, while I go down the board by row, and then across the letters, saying them by name…It is very laborious, less so for me because I have memorized the board, than for him because it is clearly tiring. I no longer stay more than a half hour, and try to keep it to 15 minutes. I try also to visit more often than once a week, and if I can, I go every two days or so. Still, as you can imagine, it can get exhausting.
I hope I haven’t repeated myself several times in the above, but if I have, forgive me. I too am tired, though hardly as tired as Joe and not for anything near the same reasons. It is only the stress of having two dear friends “in extremis” so to speak, Joe near death, and Cy seemingly having surrendered to “fading away.” I know that Cy is 92 and lost his beloved wife three years ago, and it is, I suppose, his right to want to “fade away” but goddam it, his physical health is pretty damn good, but for his own deliberate neglect of it. And it pains me to see that, if nothing else, he is just allowing himself to abdicate living and not even trying to accept treatment, either for his physical ailments nor for any depression.
Anyhow, I myself am not depressed at all, sad, yes, weepy as I said, yes, but in general just tired, sometimes headachey, but well enough. I just need to carve out enough time for myself to recuperate each week and NOT visit so much that I cannot do so. I know I need to find enough time to write and do art, as both replenish me in ways that spending time talking with others does not always do, much as I love my many friends. Hey, just writing here has done something towards that end. So thanks for listening, all you, and I’ll be Bach if you’ll be Beethoven for me…(okay that’s a stretch but I hope you’ll be waiting for me, nonetheless.)
This is how the final version of the unfinished sketch that I posted below finally turned out. I managed to print out the photo of the sketch using a photosmart inkjet printer and watercolor paper, spray that with fixative so the ink wouldn’t smudge under erasures, then draw on top of it as if it were indeed my original sketch. In such a fashion, I was able to re-complete it “better” as it were than the original “wrecked” version. And indeed, I believe it is a great deal better than the version as shown below, for all that it is a complicated combination of photographic print-out of the original sketch, combined with an overlaid color pencil drawing. The strange thing is that in the end, because of the rather poor quality of the original sketch-photograph, the background came out this dull, slightly green color (due to the lighting, not the paper it was on, which was actually white. Nevertheless, it turned out to be a perfect background for the finished drawing, and so I did nothing in the end but finish the portrait against that greenish background.
A technique I am learning/teaching myself is one I thought I would never understand, let alone be able to do and that is how to do a kind of underpainting of whites or light colors, the highlights, before adding the darker tones. I do not know, of course, if one is actually supposed to do that with colored pencils, but I did so anyway, figuring it might be time to try it. So given the original sketch to work with, I then heavily applied light peach and white tones where you can now see the lighter areas on the face, and only much later softened them with the darker chestnut browns and darker umbers, though clearly much peach shows through where the light is meant to strike the face on the left.
A “real artist” would know how to do this beforehand, I expect, but I had to learn as I went, so it was all a process of delightful discovery, which is why I hope you will forgive me the foregoing description. It always amazes me to find out how many colors there really are in what seems to be a solid colored expanse, when you really look at it. I used blues and greens in Sophronsie’s skin tones as well as the peach-tones and whites. There are also some yellows and reds. And in some places I even used a silver pencil. It took me a while before I could even understand that the whites of the eyes are not white at all, not even slightly blue all over, but all sorts of colors, and that only if you painted them in a kind of pale multi-color would they begin to seem realistic. What is also interesting is that comparing the “white” skin on the child that I did in the earlier picture, or any of the other “white” portraits compared to the African American portraits, there is really not a great deal of difference in the colors I used. In fact, I start out with the very same peach and white for both skin colors, and only towards the end does this change, when I add darker tones for the darker skin, but it really only takes a little, and then not a great deal. This is so striking because it seems to say, in some profound way, that when you really look at all of us, “under the skin” (which skin people take for being so different) we really are all the same. Of course in every real sense we are the same, despite our differences as individual human beings: genetically this is true, and philosophically, and morally and spiritually and in every other sense that matters, at least to me. We are all human and of the same “stuff” and nothing else matters. Nothing.
__________________________________
(There are not supposed to be any gaps in the following poem but for some reason it doesn’t cut and paste as it should and so it appears with the spaces…ignore them..)
HOW CAN YOU EVEN THINK SUCH A THING?
There’s no excuse for it, I know, there’s none at all, but reading
about the death of the famous poet’s poet wife from cancer,
so cachectic and etiolated her limbs are thinner than a Giacometti
I find myself disgustingly hungry and envious, both.
It is not that I want to die, not even slowly, not even
an after-the-fact-romantic death recalled for years
by other poets. No, I like life, I even like living.
But I want this house, yes, I want this small empty apartment
filled with food rich and fattening as truffles, dark, creamy truffles
made of French chocolate and wrapped in tissue-thin edible gold
so expensive it’s a mortal sin to eat even one as long
as Africa starves and cholera saps the strength of flood victims
in Pakistan. Except that leaving them to melt and flow molten
on the August windowsill feeds no one while I, longing,
linger over my dish of celery and one small onion, lusting
to taste a life I can never enjoy, to taste a lust not for chocolate
exactly, but for the life that rich chocolate represents,
appetite throwing wide its arms and crying, Yes, yes, yes!
I hope I am not encroaching on Sr Jo-Ann Iannotti’s copyright, by sharing this photo, but if I am I trust she will let me know. In any event, this is one of hers and it is everywhere at Wisdom House. I believe it is a beautiful example (if that is the proper word for it) of the spirit of Wisdom House. Of course, the physical labyrinth, is stunning by itself, but somehow this photo captures the experience of walking it and the process of meditating and “being there” in a way that mere words describing likely could not. Surely, if nothing else, this photo alone is a wonderful way to “advertise” Wisdom House, if it ever needed such a thing. If you can, visit http://www.wisdomhouse.org and look at the virtual tour photo gallery. That way, you will get a good idea of what the place looks like, and perhaps get something of the flavor of people’s first impression. I know that even the first time I came here, despite my misery concerning all that silence, I knew it was a special place…
Jo-Ann says she has no idea who the woman in the labyrinth center is, that it was a fortuitous shot and nothing more. Frankly, though, I suspect getting the photo took more than mere luck, even just to have been there to capture it! It exquisitely represents both the spirituality of this place as well as peace and peacefulness.
Clearly, you can tell where I am: at Wisdom House again, having a good time this time. I only wish I did not have to depart tomorrow.Even though I spend most of my time alone, the mere presence of other people, laughing and talking and obviously having a great time, buoys my own spirits and makes me laugh aloud myself. I think it is great that they are laughing so uproariously, and it is great to see everyone with their doors wide open, people, women my age, sitting on each other’s beds, gabbing like college girls. The lovely thing too, about Wisdom House in general is the absolute faith in people’s basic trustworthiness: NO one has a key to their rooms, and no one seems to feel worried about anyone entering or stealing a thing. I frequently leave my computer and writing equipment right out in the open on the sun porch, without the least qualm, feeling secure in the knowledge that everything will be just as I left it when I return. Indeed, the sense of trust that I know Jo-Ann has in people is infectious, and I somehow know that everyone who comes here is trustworthy at least for as long as they are here, even if they might not be all the time when they are not.
Now, I may be naive, but I too have been known to be overly trusting, and I think that is a better option than not trusting people. At the same time, though, I can be extremely paranoid as you know, and I do mean “at the same time…” I suppose that is difficult to comprehend: I will simultaneously give away whatever I can, if I feel I own too much and yet also feel as if people are secretly stealing from me, taking things I need out from under me, without even asking or telling me, which makes me angry, because I am already generous, and never ask for a single thing in return, but I’m sorry and feel bad to admit it, but somethings I am not ready to simply have things taken from me without my say so! I feel guilty about this, though, as if I am so attached to material things that I cannot part with something that someone else needs more than I do (for why else would someone resort to stealing it???). Why do I need to be so attached to anything, that is, to any mere object? It will never save your life or your soul!
I am drifting though…forgive me.
One great thing about this weekend here is that despite my having slept till noon today (after spending several days before last night with very little sleep, and even last night beginning to fear for my brain and my sanity due to sleeplessness as I was up till 4am involuntarily) I have pretty much gotten the book organized and put together. Now, that means only that I have made the organizational decisions, which is the major part of the problem. But I needs must (!) still go through the actual computer manuscript and change it, to make it conform to these editorial decisions. Not extremely difficult, just time consuming. At the same time, certain poems need editing and some rewriting/fixing. This I enjoy, the perfecting of the lines I don’t feel are quite right yet, but it takes time and energy. (I even have a two relatively new poems to add!) Alas, I will not be able to come up here to take the time for myself to do nothing else. Too bad, as it has been very convenient and much more than that. It has been, well, useful in the sense that I have been productive “to the max,” able to say NO to email and phone calls, not even walking with Diane L or doing laundry or cleaning or shopping, just writing all day. I suppose taking my usual 2 miles walk would be a good thing, but for just a weekend here, I would rather not…And although I brought art supplies just in case, I haven’t even taken out my sketch book, that is how good the writing, and the editing, have been going!
—————————————————————————-
Speaking of the labyrinth at Wisdom House as I did at the top of the post, let me segue into a few words about paranoia: I have not walked the labyrinth, nor even approached it. The closest I have come is to sit at the top of the stairs looking down at it relatively from afar. The very idea of “doing it” makes me feel both rather shy and then scared to do so. I am in fact scare that God might strike me down, should I have such temerity as to try it. I am also squeamish, not sure I could relax and not feel paranoid, not feel so much on display that I could not concentrate or let myself be “unaware of being observed” — whether I am in fact under observation or not.
That of course is the essence of paranoia: it matters not a fig whether something is really happening, it matters not another fig if someone’s really after you or really against you: if you feel it, if your amygdala is working overtime to generate that feeling, the intense feeling of fear that it is meant to generate, well, that’s it. That is how you are going to feel. And “the feeling is primary.” That’s what Dr O told me time and time again. You feel the fear first, and primarily, and then the story or reason for feeling it attaches to it. But if the fear gets entrenched or doesn’t go away, the story,, that is, the brain’s explanation for the feelings of fear only gets more entrenched, because how else can you deal with fear? It is extremely difficult to feel fear unmitigated without somehow understanding it as coming from somewhere, or being stimulated by something, having a cause or reason. The brain always wants to make sense of things, and it does this whether one “wants to” or not.
So even though I am aware of what paranoia is, I have never been able to control my thoughts when it is happening. It is only after the fact that I can, now, sometimes, look back on a difficult situation and with a clearer head understand how I might in fact have been paranoid in my behavior due to my fear- induced understanding of what was going on. It is very very difficult to override such feelings, esp on such a fundamental level.
I wish I could write more now, but I’d better to get back to my writing before I have to get back to sleep. As it is, it is 1:50 A.M. and we — Ann W drove here with me — the other fellowship person — have to drive home tomorrow around noon. I wish dearly it were not so, but there you have it. For now, I will leave you with a poem that will go into the manuscript of my second book of poems, which I call at least for now (several people have been enthusiastic about the title, except my father), LEARNING TO SEE IN THREE DIMENSIONS. I share it with you now, because while still unpublished, I do not think I will seek publication for it elsewhere, separately…The first one, for my old (and former, but possibly dead now) friend Roland, was previously published, but in a much different version. I apologize if the lines come out with large spaces between them, but the cut and pasting function never seems to allow single spaces… OR stanzas for that matter, as this poem was originally broken up inot five different stanzas but now appears to be in only one long one… The second poem is about Joe, and describes my own encounter with fear of botulism, which has similar symptoms to ALS — so I feared — and my nostalgia for his voice, which I will never hear again, except on his answering machine, and on one or two micro-cassette tapes we made some years ago…
FOR A FRIEND SUCCUMBING TO AIDS, 1980s
For Roland
This could be your whole life,
thumbing a ride to wherever the cars are going,
the casual, tossed out hellos and good-byes
that turn around the axle of your quick life —
that far, just that far, and then you will stay,
forcing a stranger’s town into the shape of home.
Yet you’ve lived a dozen lives — in the Keys
with the one you finally loved, in western Portugal,
Nova Scotia. Last year, already marked, you spent
the winter in your bed,which just fit in a backyard shed
in Vernon, Connecticut. And there was a life
to accommodate each place, its sweetness and pain.
When we met, you taught me the local architecture,
the difference between Georgian and Greek Revival,
and you thanked me for the poems you gave me.
Then you called late one night, drunk enough to over-
dose. Thoughtlessly, I rescued you, a dying man…
You never forgave nor spoke to me again.
Now once in a while a car slows, pondering
your beard, your emaciation, the known and unknown
risks, sees you finally, and explodes away from the shoulder
where you stand, all its doors locked simultaneously
against those Kaposi’s inflorescences that stain
your dying…Roland, Roland, don’t you know
we all die in shame and alone? We die, perhaps,
not far from home, or perhaps, like you, wandering,
These are admittedly older poems once-published, but they are the best I can offer at the moment for the reasons I explained, that contests and publications insist that any poem one sends to them never have appeared anywhere else before, including on the internet. Needless to say this is a major bummer, since my blog can hardly count as publication nor pose as wide distribution, seeing as how I get maybe 100 hits max a day (mark you, all, including you, my loyal lurkers, are oh so valuable to me, and if you remain my site’s only visitors, so be it. At least you are there and if so, that will be enough for me.)
The first poem describes a real, which is to say, factual incident that happened to me some years ago, while the second concerns, as may be obvious, a complete fantasy, but one embedded in the real exercise of learning CPR. I describe it literally, as it was taught back in the 80s without so much as a dummy to practice on. I will continue to add others, either at the end or later, if I can find others that have already been published, or that I am certain I will not try for. For now, I hope these have some merit, despite their age.
POEM FOR REGINALD
It is winter, four o’clock in the afternoon.
A drunk, not yet dead on his feet,
accosts me, says,
“Hey, are you a college girl?”
I am not a student anymore—
It has been years since I went by bells
from room to room,
scribbled frantic exams
in booklets bound in blue.
I look young, I know that. My hair is not
yet gray, and perhaps that is why
he asks the question.
“I read books, too,” he tells me,
falling into step beside me
though he had met me coming the opposite way
and I am hurrying to be out of Dutch Point by nightfall.
He walks me all the way up to Main Street.
accompanying me through the backyards of tenements
past lounging men who might have wished me
less than well.
Though he insists on staying on my right side
like a gentleman, some primitive fear
urges me to shift my purse
to my left shoulder.
He is a genius he tells me, and I believe him
But he is an alcoholic and his breath smells
as if he has been drinking.
Still, I am not afraid of him
and when he asks, I tell him my name.
There is something sad about him.
He says he thinks I can cure him,
could marry him.
His name is Reginald.
He speaks like an old friend
and suddenly I am lonely too.
That is all. There is no moral to this tale.
I am thirty-five, single, childless, and lonely as a drunk
I have decided, with Sr Jo-Ann’s help, to arrive at the Writer’s Fellowship on Sunday morning, rather than Saturday evening, so that she can meet me, rather than have me face a crowd of fifty (silent) people alone. It was in fact her idea, but she offered to take me individually on a tour, and show me where to go and so forth, introduce me, which she thought she would have more time for on Sunday morning than on Saturday when everyone else was arriving. This also was a relief for the simple fact that I am so frantic with things I have to get done that it helps to know I have all of Saturday simply to relax and if I haven’t done so before, to pack. It isn’t as if I am bringing a great deal, not many clothes or “stuff”– after all, I am mainly going there to write. But that in itself entails bringing such things as my computer, a printer and a ream of paper at a minimum, and I want to bring a small hot pot and cup and coffee as well, since I cannot rely simply on sheer excitement to keep me awake, no more than I ever can. Not even Ritalin, which as you may know I have taken for decades to combat the nearly constant and excessive daytime sleepiness of narcolepsy, really keeps me alert. In fact, often coffee does a better job…On the other hand, I intend to take Zyprexa every day I am there too, which is sedating. This is just so that I know I will be able to read and stay as unafraid of things as possible. Once I get home, I’ll stop taking it, but why not keep on top of things as long as I am there?
I have written several poems in just the last week, but alas, I am unable to share them here. I have learned that many contests and publications do not allow the appearance on the web of poems you want to submit to them or enter there, or else they will be disqualified. Thus I can only post ones that I am certain I will not try to publish or else that have already appeared in my book or previously in another journal, review or magazine. I wish that were not so, as I am thrilled with some of these poems. I also wish that I had not been so quick to enter a few of them into a certain contest, as with a little more rewriting, say, the 110th version rather than the 100th, I might have felt even better about them. Ah well, too late for recriminations. If a given poem is not accepted where I sent it, there are a thousand other venues that might take it when I submit it again.
Enough for now, it is already late and I needs must (how’s that for an archaic expression?) get to work finishing up the dishes and printing out poems. I will need at least 60 for my second book and I have to have copies I can work on at Wisdom House. There are a dozen other things to do before I go to bed tonight…zo I will bid you adieu, au revoir…
I hope I can post something from Wisdom House next week, but if not, I will do so when I get back. Hasta la vista!
To all whose websites I had linked to, I had to take them down because my email was hacked, but I will post them again soon. The email problem is completely resolved now.
First I will paste in what I wrote back in 2006 about Delusions of Grandeur, henceforth reduced to the easy-to-understand shorthand, DoG. (Sorry, all you dog-lovers out there!) Then I will elaborate and/or explain where I differ in my thinking now.
From July 2006, then (with a few edits for easier reading):
Delusions of Grandeur
Where do they come from? Mine were usually of a negative grandeur as you know. I was the devil, the most evil person in the world, I needed to kill myself or burn myself to a crisp in order to save the world from my poison. I even went so far as to set my leg on fire, prelude to setting myself on fire in order to do this, and burned marks on my forehead to prove I was Cain, so people would be warned and stay away…as a result I have had ECT, been restrained, isolated, locked up for months and all the other humiliating things they do to people they think might seriously hurt themselves or others. And obviously I might have, and did. But whence came this sort of thought? And why do others believe they are God or Jesus Christ or as one person I met claimed, the song-writer who provided John Lennon with his music. Their delusions may seem more positive than mine, yet I know they suffered much as I did, probably because they too went unbelieved and scoffed-at. Where does this kind of false belief, clung to in the face of so much evidence to the contrary, come from?
I’m not completely sure but DoG seem, both in their positive and negative incarnations, to derive from a terrible feeling that you lack self-worth in the world, your secret knowledge — if you have SZ or another devastating mental illness, that it has robbed you of everything you were supposed to have, be and do, that you are entirely useless and empty and without value in life. The illness itself produces this feeling, and the feeling is secondarily strengthened as a result of having the illness. People who develop DoG respond to their feelings of worthlessness with the conscious or unconscious fantasy of a powerful false-self to make up for the lack of real power — to do, to be, to create in life. Others, like me, accept our lack of value, only we exaggerate it until it becomes the dominant factor in our lives and colors everything, so that we cannot but refer everything to it and see all through its lens. We become convinced that if everything in our lives is contaminated by our worthlessness, maybe everything in the entire world is contaminated as well.
I don’t understand the transition from feelings of worthlessness to actual belief in false and grandiose facts, the transition to delusion. But I believe the connection is there, from lack of any sense of self-esteem transitioning somehow to delusions of grandeur. And that either positive or negative delusions all derive from a negative feeling, a lack of positive self-regard. I don’t think anyone who truly feels good about him or herself would ever suffer in such a way…
I must have gotten tired near the end there, as it feels to me as if I simply gave up midway, and relinquished my train of thought, and my pen, so to speak, before I’d even tried to finish. Be that as it may, on rereading the piece, my first impression, the first thing that struck me and struck me with a punch was my use of the past tense when I was describing my own experiences with DoG. This seems to me, even now, as stranger than strange. Does it mean that there was actually a time, and relatively recent to boot, when I did not believe myself to be the devil, not feel that I was evil, did not secretly want, though in a controllable way (controllable in the sense that I will not do it, so fearful am I that it would eventuate in another terror-filled hospital stay…) to destroy myself via the flames? So it seems, but if so, I have as assuredly forgotten how that felt, how such thinking was as an experience, as I have the entire 6 weeks I spent in the hospital this past April and May. Which is to say, “utterly and completely.”
What I can say now, is that it is much harder to write about DoG at any distance, or with any real so-called insight into myself (despite reading my own words) because the feelings of evil and worthlessness I wrote about in the past tense then are so strong now, in the 2010 present. I won’t, at this time, ask (rhetorically) What happened? That is for another essay. But I will admit that for me to continue with this discussion I will have to refer to what I have observed about others and their DoG, rather than any I may or may not experience myself.
Zo! Here are basic definitions, lest you have forgotten them. For my nutshells, I quote the online Free Dictionary (thefreedictionary.com).
Delusion: an idiosyncratic false belief that is firmly maintained in spite of incontrovertible and obvious proof or evidence to the contrary.
Delusion of Grandeur or Grandiose delusion: delusional conviction of one’s own importance, power, or knowledge or that one is, or has a special relationship with, a deity or a famous person.
delusion of persecution a delusion that one is being attacked, harassed, persecuted, cheated, or conspired against.
delusion of reference a delusional conviction that ordinary events, objects, or behaviors of others have particular and unusual meanings specifically for oneself.
Now, thinking about the problem I had when I first wrote about DoG, take that fellow I met, the putative song-writer of all John Lennon’s songs. He was not a happy guy. He gave not the slightest appearance of being thrilled that his songs were so popular and that Lennon had chosen them out of all the offerings he could have picked to sing and record. He claimed that he had given them freely, and wanted neither fame nor fortune, as I recall. But what troubled him, it seemed to me, what that “we,” the — I dunno what you would call “us” — ordinary people, not the rich and famous, not the celebrities with whom Lennon would have hobnobbed, but the (where did I get this word?) lumpen-prole. Actually, I think it was rather much smaller than that, even. I think what troubled him was that other patients and staff members in the hospital (at that particular time) didn’t care, appreciate, value or even believe his great contribution to the musical world. Nevertheless, despite the use of very controversial ECT (shock treatments — which were rarely used in schizophrenia, and even today are not used often for SZ) his delusion persisted throughout his stay, and by the time I was ready for discharge after 2 months, he was being transferred to a longer stay facility.
Needless to say, whether a delusion of grandeur is “positive”, which is to say that the power one arrogates to oneself is “good” –one is God or Michelangelo or John Lennon’s songwriter, or whether it is “negative” in the sense that one believes one has the power of The Black Plague, the Great Influenza or Satan etc, there can on occasion be little else to distinguish them. Unbelieved, scoffed at, dismissed, ignored, no one thrives. For some reason too, and again this is solely from the point of view of my experience, people with schizophrenia experience this dismissal, this isolation (from and by others) much more often than those with bipolar illness. This is not so incomprehensible either.
Someone who experiences mania may and often does espouse vastly grandiose delusions, but they can at first be so ebullient, so enormously cheerful and expansive (I think of poets such as Walt Whitman, whose Leaves of Grass, written and rewritten so many times, and so long and expansive itself it almost screams manic-depression — if you can forgive an exceedingly amateur diagnosis) that people are drawn to them, at least at first and for a time. In the grips of mania, a person can convince “anyone to do anything” they are that persuasive and indeed charming, in every sense of the word. But at a minimum, most do not drive everyone away from them, not at least in the beginning. So when a manic person says they wrote the songs that John Lennon sang, one is tempted to at least half believe them, and say, “Hey, you did? Cool! Tell me more.” But that fellow in the hospital, no one so much as listened to him, nor gave him the time of day when he went into his “thing” about Lennon’s songs, and so he was simply left alone to talk to himself.
Hmmm, have I wandered off the topic, or gone too far astray from where I was supposed to be heading? Well, if I have, forgive me. It’s the sort of thing I do all the time in my journal, and frankly it is far too late at night for me to remedy it, alas. So I will stop here, take a stab at proofreading, and hope I have written at least a few things for you to ponder.
As you know, I will be away from the 14th through the 21st, at the Writers’ Fellowship, so if I do not write before then, never fear. I shall write when I get home. (On the other hand, since a Silent Retreat will be going on at the same time, and since there is also Wi-Fi connectivity in the main social area or somewhere — and no one there to socialize with, who knows, I might even avail myself of the internet, and post something from there!)
Get to bed and sleep tight, all youse who are still up with me.
PS I do not know why the paragraphs in the last half keep running together but they simply will not separate no matter how many spaces I edit in between them…sorry!
Sorry for my long silence. Things have been busy at best, sometimes just plain hectic.
On the good side, though, this: the Writing Fellowship. A place called Wisdom House in the northwest hills of Connecticut offered free fellowships of 2-10 days for low-income writers from this area to come and stay to work on a writing project. I applied immediately, wanting time to organize, come up with a title, and send out my second book of poems to the Barnard women’s second book contest. Well, after speaking to my references and to my new psychiatrist, they accepted me, the sister in charge calling me last night at 9pm to give me the news. (As my friend, Leila, put it when I told her how late the director called, “nuns do not keep bankers’ hours!”)
Now the only reservation I have vis a vis the fellowship is that it is going to be held while the rest of the center is on a “silent retreat”. This means that everyone else, aside from the two other writers and me, will voluntarily not be talking the entire time. According to Leila, they will not be looking at others or even raising their eyes. While I wanted time to write, I have to admit I anticipated a more convivial atmosphere, or at least a less daunting one. This does not sound exactly friendly. Spiritual, yes, but not friendly. Sr Jo-Ann does, on the other hand, and she has offered her help in any way she can (since I have been more than open about my illness) but I don’t know that she understands quite how difficult I may find this. Even the problem of getting to the dining hall, the speaking one or the silent one, or eating with other people, should I manage to get into the building wherever it is, may pose a huge obstacle, if my experience at the art and crafts center two years ago is any predictor.
Well, I am determined to go, so I will not let my reservations, nor even the tears I shed last night in sheer terror stop me. I must confess however that I am not without mixed emotions in face of this overwhelming silence — and the resulting loneliness or something much worse — I fear I may confront.
On a somewhat brighter note, for six week, I took an art class in New Haven, at the Creative Arts Workshop. I wanted to learn the rock bottom basics, which I figured I needed to start with. Even though I have successfully painted some portraits, I know I need to learn fundamental techniques, both in drawing and painting so I’m not just floundering around, painting more in hope than with real confidence and skill. But getting to the class meant that I had to drive to New Haven — on the interstate — for the first time in more than 20 years. Unable to drive home that same night, I spent two days a week there, staying at my parents’ condo, usually with my father there (my mother was usually at the shore, at the other house). I enjoyed that part of it almost as much as the class. We were so long estranged that I love just seeing him and getting to talk with him, no matter what we talk about.
The class might easily have been too much for me. Three hours of drawing could have sapped all my energy and taken the enjoyment out of it. Instead, somehow the time just winged away, and after the first class, which was the most tiring because I had not yet adjusted to how long a span of time 3 hours was, I got into the rhythm, and never once left early. In fact, I often left with the teacher, just so I talk with her about art.
Now, I say all that as if it were easy and not problematic at all. Certainly no one in the class would have any idea that I feel as I do, but in truth I became quite certain, and remain so, that the teacher soon grew– how do I put it? — sick of me. Overwhelmed by me. Found me overbearing and overly enthusiastic and therefore unpleasant. I know my presence was too much for her to take and so I tried to tone it down, tried not to ask too many questions or talk too much so I stopped staying after class, or showing her what I had done during the week…And frankly, I am a little scared that if I sign up for her next class, which will be a continuation of the last one, it will upset her and she won’t want me there.
In point of fact, I felt the entire class was laughing at me most of the time, that they agreed with her and that they mocked me whenever I left to use the bathroom or to wash my hands of the charcoal that we used so often.
It was only just before the final class, when I brought my sketch pad and showed two people what I had been practicing, that they seemed to realize that I was serious about drawing and art, and not just a foolish older woman taking a class for entertainment. One young woman, Jennie, actually talked to me then, and said I was “very talented.” When she asked for my Facebook page, I gave her the name Pam Wagner, which of course she will never be able to locate me with, alas, as I would be happy to communicate with her.
Nevertheless, I remain wary of the teacher, and of taking her next class, lest I be more than unwelcome. Lest I be bothersome and actively hated. I feel it incumbent upon me to spread myself around, spread the burden around, spread the miasma I cause as wide and therefore as thinly as possible so as not to sicken anyone seriously. The only real solution I can think of though is to completely shut up and be as minimal a presence there as I can. To not be visible in any way, to make no sound or impression…To do the work, and learn what I can, without, so to speak, making a mark. That way I won’t bother anyone or disturb the peace, or anyone’s peace of mind.
Then there are less positive aspect of being “busy” — Well, no, I cannot dig into this at the moment, except to say that I need to take a break from seeing Joe. Joe, if you recall, is my long-time friend (24+ years), who has Lou Gehrig’s Disease and has been in hospital for 3 years, mostly paralyzed and on a ventilator. I have visited him almost every week, sometimes twice a week, all of that time, but now I need to take some time for myself, take some time to think about what to do.. It is true that I have sometimes been away for as many as 6 weeks, but that was when I was hospitalized, and while to Joe it may feel only as if I am absent — who cares why!– to me it is not voluntary time off and certainly no vacation!
I love Joe, but only as a friend, not as a girlfriend despite what people think. And if the people in the hospital believe otherwise, it is only because I told Joe when he first became ill, that I would “be his girlfriend” — the one dream he always cherished and held out for and hoped would come to pass for some 24 years! And mostly because it was the one gift I could give him, knowing that it was a dying man’s wish-come-true.
The problem is that when he was in fact dying, when he had terrible aspiration pneumonia and could not breathe without assistance (at which point, most people with ALS, or Lou Gehrig’s, opt to die, knowing what the future holds) he asked to be put on a ventilator. Hence, for the past 3 years, I have had to act the part of devoted “girlfriend” (completely non-sexual, though, just as our relationship has always been). And it has long been assumed that my love for Joe is the sole driver behind my visits. Not pure loyalty, mind you, but in some sense my own selfish need to be with him. It seems not to have occurred to anyone that maybe I do it mostly for him, to help him and keep him company…rather than because I myself want anything from it at all.
This is not to say that I don’t enjoy seeing Joe, or that I resent spending time with him. Most of the time I do not, or when I do, it is only because I feel I cannot say, No, I cannot come today, or worse, No, I do not want to come today, not even when I haven’t slept and am utterly exhausted. Usually when or after I visit, I feel better in some sense — at least about us. I feel less guilty and more needed (a double-edged sword!)
But I admit that it is extremely tiring to have to stand up the entire visit — an hour or two — and pay exquisitely close attention in order to understand what his computer (which takes eons to do it) translates from his spelling into speech. When I finally get home after the 30 minute ride back with Josephine, I am wiped out for hours. Even on a good day, the rest of the afternoon is shot just because of visiting him, and that is true even when I only stay an hour.
Well, I said I wasn’t going to go into it, esp not with details, so I will leave that alone, except to say that recently we had a big — what was it? Altercation? Spat? Misunderstanding? Who knows what to call it, but it left me me feeling unappreciated, taken for granted, and most of all, just plain angry. Worse, it induced this exhausted feeling in me that left me hopeless and desperate. That is why I wrote Joe and told him I needed some time off, needed time to reflect and think about things. I did not ask him for it, nor tell him what I needed it for, nor how long it would take. I did reassure him I would be back. But otherwise I simply stated my needs and informed him what I was going to do about it.
I haven’t heard from him since, but unless he is still upset or angry with me, which would be unlike him, he is simply giving me the space I need.
That is all I have the energy and time for tonight. I hope to go out for another of the 2 mile walks that a friend and I have set for ourselves to do as often as we can. We are trying to get in 10 miles a week, but so far I think the best we have done is maybe 8 miles. Still, that is MUCH better than doing nothing at all, which was my usual, until we got together to spur each other on. Usually it is she who gets me up and over to the park to meet her, and I who keeps her going at a great clip. So we help one another and get our gabbing done into the bargain.
Thanks for your patience. I have another entry planned, and hope to work on it tonight for posting tomorrow or the next day — about delusions of grandeur and other symptoms.
Sorry for the long absence. I was in yet another Connecticut hospital for 6 weeks, and as usual it was horrible. I admit that they — the staff — must have hated me as much as I hated most of them as well. I do not think that they understood quite how much I was “not myself” most of the time I was there. Luckily, perhaps, the weekend doctor was one who had treated me years ago and for several years at that, and she said quite openly that she had never seen me like that and knew something was wrong. But the other staff did not know me and so they took my rage and irritability as “bad behavior,” as one nurse called it. Why it didn’t occur to them that there was something strange about the fact that I didn’t even remember from day to day what had happened or what “I did” I do not know.
Anyhow, now I am on a trial of Saphris but I do not think it is going well. I cannot motivate myself to do much of anything, including writing, reading or any kind of art. I even look at my beads and wonder what on earth ever possessed me to want to do jewelry making. I am hoping that I will be switched back to Abilify soon (not Zyprexa on which, after the hospital, I gained at least 10 pounds). At the very least it must be added to the mix. Otherwise I do not know what I will do. Dr B and the visiting nurse probably will not agree, feeling as they do that it does not work for me. But I think it does and frankly I will not take anything else, so it is the Abilify and the Geodon, or the Abilify and the Saphris, or nothing at all. There is nothing else that works at all that I will take.
I will also add that after struggling to feel that Dr B was helping me, and that he “cared,” I have decided that we do not work well together. Maybe some other male psychiatrist and I would, but for now I am switching over to a female doctor, Dr C.. She seems very nice, and if she and I do not work out, there is yet another that seems promising. But so far I felt very good about Dr C right from the start.
So for now that is all that I have the energy to write. For the short time that I was on Zyprexa right out of the hospital I wrote a poem called, “How to Swim: Poetry Manual #2”, and I wish I could share it here, but I have sent it out for possible publication and I do not think the magazine would appreciate it if I printed it here first (they are fussy about things like that, alas.) So I will leave you with one that I think will go into my second book but which I probably won’t publish before then instead.
ARTICLES OF FAITH
Black ice. An accident’s chain-
reaction like toppled dominoes,
and you steer into a skid
on the frictionless slick
missing, by the merest sleet needle,
a chrome-crumpler 28 cars long. It’s night,
your face glows dashboard green
touched with gold as we pass
streetlights in review.
Someone up there
must be watching out
for us, you say, meaning you,
me, and this carcass of a 1986 Chevy,
in ‘03 still too good to let go.
But it is something more than
mischief in me when I remind you
of the 28 drivers whose cars accordioned
in the whiplash of impact.
Was the the big guy upstairs
not watching out for them, then,
or worse, deliberate in his neglect?
But this is not a theological poem,
it is only a prayer whistled
devil-may-care into the void
by a nonbeliever who knows nothing
is guaranteed save that none of us
will survive our lives. The pile-up
behind us, we’re wowed breathless
by the nearness of our miss
and though there’s still
the matter of those hapless 28,
even I whisper Thank God!
to still my trembling hands.
(When I pasted that in it came out in double space, but it was meant to be single spaced. Not sure how it will appear in the blog…)
That’s all I have the energy for tonight. When I have a little more, I will get back to you. Please do not give up on me. Thanks.
Okay, all you poetry fans of mine, and anyone out there who reads this in general! This is a rather late announcement, but this Sunday at 5pm Eastern time (you will have to make the proper adjustments if you live in other time zones) Jane Crown, at http://www.janecrown.com will be doing a 90 minute interview with me http://www.janecrown.com/archive_radio/Pamela_Sprio_Wagner.mp3 that will be part personal interview and part poetry reading both from WE MAD CLIMB SHAKY LADDERS as well as new poems, and she may possibly include some reading and/or discussion about my memoir DIVIDED MINDS: Twin Sisters and their Journey Through Schizophrenia. I hope as many of you as possible will listen, and if you are not interested in poetry will listen out of interest in schizophrenia, as we certainly will speak of that.
By the way, Jane tells me that the show will be archived and “available forever” so if you cannot sit and listen for 90 minutes this Sunday, do not worry as you can do so at any time and for any length of time. Just follow the link or do a search for Jane Crown and radio or poetry and you should find it without trouble.
Now for an update: Well, first of all, let me say that I want to write an update but first I need to start my review of the poems I am going to read on Sunday, and read a little of DIVIDED MINDS, so I can recall what got into the book out of my 400pp original manuscript and what was cut. So forgive me if I put the update and rest of this post off for a few hours and get back to it maybe after 11 pm tonight. Or if not then, as I must get up early tomorrow, then I will write a new post tomorrow. For now, suffice it to say that I feel extraordinarily HAPPY!
Apparently We Mad Climb Shaky Ladders (CavanKerry Press, Feb 2009)my book of poems about living with schizophrenia, has been nominated a finalist for ForeWord Magazine’s 2009 Book of the Year (in the Poetry category). I dunno what this means, and I doubt highly that it will win, but I am very happy and grateful to have been made a finalist at all. The results will be announced on May 25th at the BookExpo American, wherever and whatever that is. I’ll keep you posted, or perhaps you can keep me posted…
Here’s the cover of the book just in case you don’t know what it looks like:
Check out the http://mertoninstitute.org for the source of this, but in the meantime, I think it is not illegal to reprint it here, a marvelous poem, chosen by our friend and hero, Billy Collins, for the 2008 Merton Prize for the Poetry of the Sacred. As I wrote in a letter to a friend about it: I have this secret fondness for formal poems that hide their form beneath enjambments and nonchalance and (perhaps this may sound weird) humility, as I sense this poem does…I really liked it, found it sort of Frost-like, without its insisting on the likeness. Could not find out anything more about the poet, nor any more of his works, except the single sentence that he has indeed published before…Wonder where and what.
The Orb Web
by David Culwell of Columbus, Ohio
One night I stood inside
And, through the fan-shaped window in
The front door, watched a spider spin
A web to snare, in its tried
Way, some of the mesmerized
Moths fluttering in the porch light’s glow
Like bits of paper people throw
At parties or pint-sized
Satellites. The wheel
Of a web hung beneath the right
Corner of the frame, not quite
But nearly setting a seal
Against my going out
Or someone’s coming in. Indeed
A friend was coming soon to read
My hard-spun lines about
Beauty’s fading bloom.
I need to get the broom, I thought.
But I just stood there gazing, caught
By the eight-legged loom:
An inch or so, with gray-
Brown hairs and legs with bands of brown
and yellow, it hung upside down
Laying a sticky ray.
Like a second hand
It circled, moving inward; soon
the web, which seemed a gauzy moon,
Was done, with every strand
Laid necessarily.
The web itself was like designs
On Persian rugs; I read its lines
As living poetry.
A moth flew into it
At three. It fought, wings flickering,
To free itself, but couldn’t spring
Away from the gripping knit.
The spider scuttled there
And nimbly spun the moth in silk
While another of its ilk
Flew into the snare.
The spider hardly knew,
Of course, that something like a gust
Would sweep away its work like dust
And leave no strand in view.
I looked at my watch: the time
Was near. I didn’t lift my gaze,
But walked away, trying to raise
The mettle for the crime.
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.
Here are a few sample poems from my new book WE MAD CLIMB SHAKY LADDERS, (which, despite what many have been told IS available from Amazon and B & N and upne.com so keep trying if you have been told it is not…I know as I just got some extra copies from amazon). Here is just a teaser to get people interested:
These first two are from the first section, which concerns my childhood and the first intimations of illness. Here are the first indications that touch is difficult, even threatening to me. In the second poem, I describe my twin sister’s wholly different attitude towards her body, how in a more innocent time, wolf whistles by teen age boys were considered harmless, complimentary even, and wearing tight jeans was not an invitation to anything but, as in this poem, pleasure on the part of both young men and the young woman described…
AMBIVALENCE
Touch me. No, no, do not touch.
I mean: be careful —
if I break into a hundred pieces
like a Ming vase falling from the mantle
it will be your fault.
JUNIOR MISS
Cool as Christmas
plump as a wish
and simonpure as cotton
You stroll the avenue
mean in your jeans
and the boys applaud.
You toss off a shrug
like a compliment
with a flicker of disdain
Catching the whistle
in mid-air and
pitching it back again.
“Eating the Earth” is more or less a true story insofar the little boy in a nearby neighborhood did rub a certain little girl’s face in dirt for telling him where babies came from and she did dream the dream descrbed. What this all means is up to the reader to decide, however.
EATING THE EARTH
After Tyrone, the little boy next door,
makes her eat a handful of dirt
for telling lies
about where babies come from
her father says it will do her no harm.
You have to eat a peck of dirt
before you die, her father says.
He also says she hadn’t lied:
babies do come that way.
She cries after her father
leaves the room and she sleeps
all night with the lights on.
Her father tells her other things,
that earthworms eat their own weight in dirt
every day and that their do-do
(he says “excrement”)
fertilizes our food.
She makes a face over that
and doesn’t believe him.
Besides, she says, we’re people
not worms.
And we’re so great, huh? he says.
Well, I’d rather be a girl than a worm.
He says nothing.
He is grown up and a doctor,
he doesn’t have to worry about
being a worm.
But she does.
That night she dreams that Tyrone
dumps a jar of worms down her shirt
and that their dreadful undulations
become hers and she begins
eating dirt
and liking it,
the cool coarse grains of sand,
the spicy chips of mica,
the sweet-sour loam become her body
as she lives and breathes,
eating the darkness.
FUSION
It was a frying pan summer.
I was playing croquet by myself,
missing the wickets on purpose,
rummaging my pockets for dime-sized diversions.
It was a summer of solitaire.
I laid the cards out like soldiers.
I was in command.
Then you came out
with a mallet and a stolen voice
that seemed to rise disembodied
from the gorge of your black throat
and you challenged me to a game.
You ate me with your mosquito demands
though I, I didn’t want to play with anyone!
I hid my trembling in my sleeves
refusing to shake your hand.
I thought: this is how the Black Death was
transmitted, palm to palm, hand to hand,
a contagion like money.
You smiled the glassy grimace
practiced for boys all summer in front of a mirror.
Yes, I finally hold it in my hands, We Mad Climb Shaky Ladders, published by CavanKerry Press. Below is the cover illustration (minus the Spiro, which is on the final version) and the press release:
We Mad Climb Shaky Ladders: Poems by Pamela Spiro Wagner
NEWS from CavanKerry Press
6 Horizon Road No. 2901 • Fort Lee, New Jersey 07024 • phone/fax 201.670.9065 • cavankerry@optonline.net
FOR IMMEDIATE RELEASE
Contact: Florenz Eisman — 201.670.9065
WE MAD CLIMB SHAKY LADDERS
Poems
Pamela Spiro Wagner
With Introduction and Commentary by Mary B. O’Malley, MD, PhD
Foreword by Baron Wormser
For forty years – longer than her entire adult life – Pamela Spiro Wagner has been affected by paranoid schizophrenia, a plight she eloquently explored in her award-winning book, Divided Minds: Twin Sisters and their Journey Through Schizophrenia, co-written with her twin sister, psychiatrist Carolyn S. Spiro, MD. Also an accomplished poet, Wagner has long utilized the language and emotion of poetry to express the individuality of her mental illness, capturing with vivid candor her singular inner world. In WE MAD CLIMB SHAKY LADDERS, the latest volume from LaurelBooks, CavanKerry’s Literature of Illness imprint, Wagner for the first time collects her poems, presented with commentary by her psychiatrist, Mary B. O’Malley, MD, PhD, that elucidates the clinical roots of the poet’s art.
WE MAD CLIMB SHAKY LADDERS “is much more than a testimony to a diagnosis or pathology or terminology,” writes Baron Wormser in his foreword. “The poems emanate from the place of the poet’s illness but they are resolutely poems—well-written, sensually alert, quick to turn and notice and startlingly honest. They dwell on both sides of the equation of life and art: testifying to the powerful and tenuous links between the two and demonstrating that art is capable of holding its own regardless of circumstances. Some of those circumstances have been shattering. The sheer tenacity that it can take to write poems makes itself felt here in ways that are both uncomfortable and reassuring.”
Wagner’s often harrowing struggle with life, as reflected in these poems, has been marked by psychological turmoil – periods of total debilitation, as well as intervals of recovery and hope. Her battle with paranoia hovers over the work, such as in “Poem in which Paranoia Strikes at the Grocery Store” where the simple act of shopping becomes a waking nightmare: “Who/gave you permission to enter? No one/wants you here. They are all watching….You are being followed./You are on your own.” Wagner captures the voices in her head with terrifying urgency. In “Offering,” Wagner’s very first poem, written in 1984, she writes of her compulsion to burn herself with cigarettes with a haunting remove:
The tip of the cigarette glows and grins
as I lower it to you,
Unlover,
alien body.
At Dr. O’Malley’s urging, Wagner has also included three poems she wrote during the heights of psychosis, and these are filled with scrambled ideas and garish imagery that are shocking in their raw, unguarded unveiling of the poet’s troubled mind.
Divided into five sections, Wagner’s book covers childhood and the earliest indications of illness, the years of illness, recovery, coping, and new beginnings. As with most poetry grounded in autobiography, there are important familial relationships that seep into the poems – father, mother, sister, friends. Here, these relationships are filtered through the poet’s psychosis, colored by hallucinations and delusions, yet grounded in the emotional truths that any complicated relationship engenders. In her most widely known poem, “The Prayers of the Mathematician,” which won First Place in the BBC World Service international poetry competition judged by Wole Soyinke, Wagner moves beyond the personal with an eloquent poem about John Nash, the schizophrenic Nobel Prize winner who was later immortalized in the movie, A Beautiful Mind.
“These poems are the work of a first-rate writer” says surgeon and best-selling writer Richard Selzer of WE MAD CLIMB SHAKY LADDERS, “one who has sounded the well of her own suffering to retrieve the wherewithal to transform pain into the most powerful and moving literature.”
~~~
About Pamela Spiro Wagner
Photo of the author in May, 2009
A prize-winning writer and poet who suffers from schizophrenia, Pamela Spiro Wagner attended Brown University and went to medical school for one and a half years before being hospitalized for psychiatric care. She won First Place in the international BBC World Service Poetry Competition in 2002, and co-authored, with her twin sister, Divided Minds: Twin Sisters and their Journey Through Schizophrenia, which won the national NAMI Outstanding Literature Award and was a finalist for the Connecticut Book Award. Currently she writes at http://WAGblog.wordpress.com. She has lived in the Hartford, Connecticut area for 33 years.
CavanKerry Press would appreciate two tearsheets
of any review or feature you publish about this book.
WE MAD CLIMB SHAKY LADDERS by Pamela Spiro Wagner
Publication Date: 2009
Price: $16.00; ISBN: 978-1-933880-10-5
Distributed by: University Press of New England (UPNE), 1-800-421-1561 or 603-448-1533, Ext. 255
Author is available for speaking, readings, and workshops.
Contact: pamwagg@cox.net or pamwagg@yahoo.com
Tel: 860-257-9188
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.
Although this poem, under a slightly shortened title, will be in my soon to be released book, WE MAD CLIMB SHAKY LADDERS, I showed the rewritten version to my writers group tonight . It is basically a true story, about the friend whose recitation of a Gerard Manley Hopkins poem instantaneously converted me from a poetry skeptic to a poetry lover…but read on and you will see what happened.
The second poem was sparked by my recent hospital stay but not based on it, rather it is based on the misinformation purveyed by movies such as the ones mentioned in the beginning of the poem, and also in the books from which the movies were made.
YOU WERE A POET ONCE (NOW YOU ARE
LOST IN THE MIDDLE OF NOWHERE…)
You were a poet once. You touched my soul
with the gift of poems, teaching me to read and write–
oh, inevitably to write them, for writing made me whole
and I could never not write. I had no special goal,
only to “pour out a poem” and work it right.
That took me years. I was such a fool —
dreamy cups of poems, quote unquote, only wasted good ink…
But I was speaking of you. You gave me the tools
to teach myself; you should have returned to school.
You found vodka: you could not, after one drink,
stop. And though it seemed deliberate, a choice,
I suppose you couldn’t help it. On conversion day
you recited Hopkins’ “Spring and Fall,” your voice
for once not blurred by Popov. (Still, I didn’t dare rejoice.).
You were so sure, so caught up in what you had to say.
It changed me utterly. Few experiences work such magic.
Why you quit poetry for drink I’ll never understand.
Life made you querulously unhappy, so there’s a logic
in your refusal to live. But I’ll never not think it tragic
how your gift to me soured in your own hands.
REALITY CHECK
First, you have an address, a 9-digit zip code
and two free patient telephones, so you’re not lost
in the middle of nowhere, this is not the movies.
Not Cuckoo’s Nest at any rate, nor the I-Never-
Promised-You-a-Rose-Garden rose garden.
And that Girl, Interrupted? No, it is definitely not
The day our book, “DIVIDED MINDS: Twin Sisters and Their Journey Through Schizophrenia” came out, in mid-August 2005, Carolyn/Lynnie, my twin sister, and I had three engagements scheduled, including a radio interview, a TV appearance, and, that evening, our first public speaking/reading engagement at a local library. Due to advance publicity and widespread interest, it turned out that the venue had had to be changed to accommodate all the people who had called ahead indicating they planned to attend: instead the usual small room at the library, we were to speak in the auditorium at the Town Hall.
I made it through the day all right, but by evening, I was beginning to become symptomatic, hearing people unseen whispering over my shoulder and seeing familiar dancing red particles I called the “red strychnines.” Nevertheless, I was determined to make it through the final “gig” of the day in one piece. I was, however, getting more and more nervous, despite taking my evening medications early. Finally, Lynnie suggested I take a tiny chip of Ativan, not enough to make me sleepy but enough to calm my anxiety. I resisted up until the last minute, when, finding the stress unbearable, I agreed to it. She ran to get me some water, and came back with two cold bottles that had been set aside for us all along.
Then, we were on. Lynnie had done some speaking before, and seemed to me to be amazingly relaxed in front of the 340 people who overflowed from the first floor onto the balcony above. When she introduced me to read a section of a chapter I had rehearsed over and over until I could do so with the proper ease and feeling, I got up, trembling, and walked to the podium, wondering if my voice would tremble also.
In the book’s margins I had everything written out, from my introduction to the passage to instructions to myself on where to slow down, where to raise my voice, where to pause and so forth. I raised my head and looked at the audience, then looked down at the text and taking a breath, began.
I was surprised to hear my voice sound as strong as it did and wondered how long I could keep it up, knowing how fatigue and awareness of the audience could make it weaken and go tight on me. Indeed, after a particular spot in the book brought painful laughter from some in the audience, I could barely speak. I had coached myself for this eventuality: Breathe, I told myself silently. Breathe through it, keep reading but breathe slowly and calmly as you read and your voice will relax and stay loose. To my intense surprise and relief, it worked. I made it through the entire segment. “Thank you,” I murmured, indicating that I was through,” though it was obvious from the text that the piece had come to its natural end.
The audience burst into applause. People stood up, all of the audience stood and clapped. I didn’t know what to do. They were applauding me? What had I done to deserve this? Even Lynnie was on her feet and smiling. She nodded at me, telling me it was okay. Her eyes seemed to sparkle, as if they were full of tears. My own eyes were wet and I was too embarrassed to wipe them…
Lynnie then gave a speech of her own, a wonderful speech, ending with her asking me to stand up. and this too received a standing ovation. We looked at one another.. Who’da thunk? our eyes asked in pleased but puzzled amazement. Then it was over. But not quite. There was still a long line of well wishers with books to be signed and many people who wanted to talk to us. I was so tired that I let Lynnie field most questions, and hid behind her or busied myself signing and pretending to pay attention to her, so I didn’t have to talk myself. In truth, I was exhausted, and though elated the evening had gone so well, on the verge of tears from sheer relief…
When we left, there were only a few people remaining in the hall. The library employee who had given us the opportunity to speak, told us it was one of the best attended events he had ever scheduled. We thanked him or Lynnie and Sal, her new boyfriend, did, I mostly lagged behind, and followed as if in a trance. Then we headed out into the warmth of the August night.
After the success of that night, the book tour, and later our paid (Lynnie was paid, I was not, as she had to take time off from her practice to do so) engagements became easier and easier, especially after we worked up speeches of our own and developed a rhythm and interaction with one another that seemed to work well. But it was wearying, and I wasn’t always taking my medication as I was supposed to. I still hated Zyprexa, which we had cut to 2.5mg plus Haldol and Geodon, and so I skimped on it as often as I could, as well as the deadening Haldol. Geodon was the only antipsychotic I was on that seemed to have no objectionable side effects, but it clearly was not effective by itself. So even as we made our way out to Tucson, AZ I was skating on the edge.
2006, fall. I had made it 18 months since my last hospitalization but fatigue and exhaustion and it may be (I do not now recall for certain) not taking all my medications as prescribed conspired to allow in the same hallucinations that had such devastating consequences back in 2003/4. I was to set my whole body on fire, they told me, not to kill myself but to scar myself so badly that all would shun me, leave me alone, which was what I deserved, and what they ought to do in order to be safe. Because I could not promise not to act on these commands, I was hospitalized not far from where Lynnie lived at the time. I spent a month there, a very difficult and painful disruption in my life about which I have written earlier (see the entry about “trust”).
I was hospitalized it seemed every five months after that, until 2008, when I managed another 18 months. But life in between those stays was improving. Although we still did occasional speaking “gigs” we slowed down on those a great deal, so my time was more my own. I had made a papier mache llama once in 2004 when I was hypomanic, and it had taken all year to paint it, after I’d come home from the hospital no longer high. But the fun of it had stuck with me and in 2007 I made a turtle, a huge tortoise and took a couple of months painting it. In between I created some small objects. Then over December 2007 and January 2008 I built and painted my first large human, the Decorated Betsy. I was off and running, with Dr John Jumoke coming in April, May, and June of 2008 and the Shiny Child Ermentrude started in October of 2008 and finished in early January 2009.
Also in this period of time — between 2005-2009 — I put together my first manuscript of poems written over a 20 year period about living with schizophrenia, and another manusript of more recent poems, not about schizophrenia, and sent the first one off to the press which is publishing it, in their series on chronic illness. Once it comes out, probably in March, I will be free to finish work on the second. I will send that one out and hope it too gets published as I prefer those poems to the ones in the first, though I have had rave reviews on that one, at least from the people who have seen it so far. I, of course, as the author, can only view it through the jaundiced lens of self-criticism and self-hatred…
Plus ça change, plus la meme chose. (and some things never change…)For all the seeming success I have had in these past three years of recovery, I still struggle with abysmal lack of self-regard, and chronic paranoia. If and when I find myself a new therapist (I must soon leave Dr O, as the travel time 1.5 hours there and 1 hour home has become too much for me, and too it may be that she will no longer be continuing her practice, though I do not know that for certain…But in this economy, I can no longer afford the ride there as well as her fee. And I think too it is time to move on…both for her sake as for mine.) ..if and when I find a new therapist, it is those two things, self-esteem and the very right to have it, and paranoia — how to either end it, or live with it, are my two major goals I want to deal with, head on.
But then, maybe that’s all we have ever done, Dr O and I, dwelt forever on my lack of self-esteem and my paranoia, getting nowhere for all that. Perhaps she had the wrong tactics, the wrong methods, or else perhaps I am hopelessly mired in my own worthlessness and suspiciousness — for lack of a better word, though paranoia means so much more than that…
In any event, I have tried here to describe in one entry a little of what has gone on for me since the book came out, since the beginning of my recovery. But my recovery truly began when I’d started Xyrem some months before. That is the drug that caused Lynnie to exclaim upon seeing me, two months after I’d started it, “Pammy, you’ve changed. You look wonderful, you’re back.” Xyrem, book, papier mache, poetry…all together gave me parts of a life that became somehow worth living, and it is worth living, even if at times of dark forgetting, as in February, I lose track of the one fact I need most to remember.
WAGblog: Dum Spiro Spero 