(altered and a tad rewritten to eliminate sexist language)
with humble apologies to Rudyard Kipling
If you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when neighbors doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don’t deal in lies,
Or being hated, don’t give way to hating,
And yet don’t look too good, nor talk too wise:
If you can dream—and not make dreams your master;
If you can think—and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build ’em up with worn-out tools:
If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: ‘Hold on!’
If you can talk with crowds and keep your virtue,
Or walk with royalty—nor lose the common touch,
If neither foes nor loving friends can hurt you,
If all can count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds’ worth of distance run,
Yours is the Earth and everything that’s in it,
Your self’s true self in honest honor’s won.
PS if you want to see the original, you can easily google the poem and find it on line.
Living in a hospital is like living in an Ice Hotel
where all the appointments beneath the furs and fleece
are hard frozen to the floor
Like Ice Hotel staff, the nurses try their best
to be kind, to find compassion for those suffering
here on their sub-zero beds.
But really, they have their warm lives elsewhere.
The psychiatrist knows better. She visits briefly
once a day at the height of the sun, chewing her Vitamin D,
and encourages Hotel visitors to Happy Talk
and Life Skills. If she fails to ease their suffering
in any part, it is because she does not see it, blind
to the fact that the beds are frozen pallets that chill
to the bone. She sees only the furs and warm fleeces.
She cannot fathom why one would not rise and walk
under her cheerful ministrations after a few nights
spent on a banquette of ice. Only the aides
are savvy enough, being low-paid and long-working,
to bring in oil lanterns and hot water bottles.
The patients love them and when finally it comes time
to leave, strange how difficult it is to say good-bye
to even the hardest corner of this place.
luckily i no longer live in a hospital but in a little corner of paradise, in Brattleboro Vermont. And soon I will be writing you about my place. All week i had a headache, which was a beach that was decidely not Miami. But I stopped taking the Abilify on a whim, and wouldn’t you know, immediately the headache ceased. I cannot tell anyone this, because they will become up in arms at my stopping a “necessary medicatoin” but if I do not tell anyone, and things go just fine, won’t that be funny as hell? I think so. And that is precisely what happened when I stopped the Zyprexa, the last time. Everything was fine fine fine,. for six months, and never stopped being fine. I mean I did just as good off it as on it, and we never started it with any good being done, again.
But no negativity from me today. Instead I will leave you with the sunny face painting I did for a member of BRattleboro TIme Trade, in preparation for a papier mache sun we want to work on. Love to all of you!
Written months after my 4-week admission to the psychiatric unit, W-1, at New Britain General Hospital/ Hospital of Central Connecticut, in 2014 where I was “treated” and abused by Dr. Michael Edward Balkunas, MD
Nine days after your worst hospital stay ever
you are still wearing the shades
that protect others from you
though no one else believes they are in danger
Those staff however wrote you up
as “assaultive” and dangerous to self
and others. But they didn’t mean it the way
you do now and their description of your
behavior was neither accurate nor truthful
Often they lied, as liars do,
just for the sake of convenience.
Now you are a week away from meeting new “cousins”
who await your vacation in northeastern Vermont,
a place magically named the Kingdom
and the recuperation your mind-body badly needs.
Still unable to let go, you perseverate over
the half-nelson grip of sadistic guards
bent on eliciting pain.
What happened to the nurses’
their concern for “the dignity, worth,
and uniqueness of every individual”,
or their “primary commitment
to the patient?”
When the guards forcibly stripped
then four-pointed you to an bare mattress
they were just replaying their favorite rape
yanking each limb wide
to expose, degrade, humiliate.
Never mind the nurses’ vow to protect
the vulnerable. The official hands-off policy
protected only their own asses.
So how do Truth and Forgiveness Programs proceed
when so many refuse to acknowledge wrong?
The hospital broke every humane rule;
they only stopped short of murder
because you submitted,
nick of time. Yet they had the last word:
stuffing your screams
when they muted the intercom
and slammed the door between you
and the mandatory one-to-one observer.
No one ever is there to bear witness, is there?
That point has always been the point,
from Daddy to doctors.
and all the hairdressers and nurses in between.
They’ve made a religion of secrecy
and no one wants to know
what they don’t want to know.
Call it “our family’s business,”
call it “a private cut and shampoo,”
or just call it, discreetly, “treatment”–
but they can always do what they want to, to you. .
When they break you, they declare
you’re just “one of the family,”
no different from anyone else,
now that they’ve finally fixed you for good.
When I lose you,
will you remember the leaves
of my brown name?
Not like an oak, which clings
snow after snow
but like the poplar
spilling her yellow dress
to the insistent fingertips of fall
The mother of grief
is a kind forgetting
and I tell you now
that I will forget everything
I will forget even you, beloved
like a leaf stilled in limestone
who would have thought
we could weigh so little?
Even the first time, surrender was not hard,
though the grownups and mothers
with their drinks and swizzle sticks
undoubtedly thought it so when you volunteered
your only present that 10th Christmas
to a younger child who wouldn’t understand
being giftless at the tail end of a line to Santa,
nor your inherent sin in being born.
Such generosity should have stayed
between your concept-of-God and you,
but grownup admiration (you could not hope
to make your act unpublic) sullied the soap
of any generosity’s power to cleanse you.
Other atonements followed, only one
almost perfect, being perfectly anonymous
spoiled by an accomplice’s later telling.
Perfection? You never made that grade,
your terrible love for God demanding all life
from your life. No one told you, “Live a lot,”
not in words that made it matter, though
they doubtless counseled, “Live a little.”
You were always in school to be perfect,
never knowing that life is a classroom
where one learns to love flaws
by throwing bad pots, to shatter
them with careful hammer,
assembling beauty from broken things.
I do not believe I posted this poem here before. I may have but I doubt it as I was going to publish it in a print journal. Instead, I never sent it out. So instead I choose to “sacrifice” it here. (meaning: If i publish it online here I cannot do so in a print journal…so this is for you, folks!)
I am going to tell you about the child I was when I was very small, as small as I can remember. The first thing I remember about myself as a self, was…well, what do I remember? This is hard. For one thing, while I am down to only 5mg of Abilify, I still take 160mg of Geodon, but more important I still take 200mg of Topamax, an anticonvulsant that has known adverse effects on memory and cognition. Whether it actually interferes with what I can recall from childhood or not, I could not say…Perhaps ECT did that, 16 plus 5 sessions of ECT could have done a number on my brain, especially as I had active neurological Lyme disease at the time. The Lyme-literate neurologist advised strongly against ECT, but the hospital psychiatrist forced me, at least through the last 8, after I refused to go back, by getting a court order and drugging me on so much Thorazine I had no will.
Ah, but “They,” the faceless They of Authority, They say that ECT affects only short-term memory. Well, then, I guess just being 60 years old and having gone through trauma after trauma in the present decade alone surely could have wiped out memories from a half century ago and before. Whatever is the case, I must now scour my brain to recall what I thought I could recall easily.
Marjorie M, an old friend of my father’s, related a significant story recently — about me at age 6. Given our bedroom when she stayed with our family to recuperate from surgery, while my twin sister and I camped out somewhere else in the house, Marjorie was relaxing in my twin bed, alone, when she was surprised by my little face in the doorway. “Hi, Mrs M,” she tells me I said. “Why, hello, Pammy. How are you?” I looked at her with concern. “Are you all right, Mrs M? Are you lonely? Do you need anything?” (or something to that effect..) I am astonished that even at age 6 I knew I needed to “do this,” although I think that my mother, who disliked Marjorie intensely, was probably ignoring her and I suspect knew it even then. But Marjorie says she fell in love with me at that moment. She certainly never forgot the incident. Bless her heart…
I forgot it, likely I never knew or understood its impact. Given that I was six, I had already made the decision the year before, when Martha was born and I was five years old, that since I would never have the older sister of my own dreams, I would instead have to be the older sister I dreamed about for Martha. I made myself the promise to Martha, the day she was brought home from the hospital, that I would do everything in my power to be in Martha’s older sister the OS I would have wanted.
In all our childhood photos, until the year I turned 14 and stopped permitting photos to be taken, you see two things: I am almost always featured next to Martha, with my arms around her or somehow touching her, protective of her, and my twin sister is with the dog or otherwise occupied. Always. You might not be able to tell which twin is which from our facial features, but you can tell us apart from that. One of us is with Martha, and you know I am that twin for certain.
It is the greatest loss to me, the worst thing, the — I can only say this: I am not a quitter, but I was unable to complete that most important of assignments because of what happened to me in high school, whatever you want to call it. I either became ill, or troubled or had too many problems…whatever it was, I simply could not function well enough to do all that I promised myself (and Martha) I would do for her. I could not BE the person I needed to be, the functioning adequate teenager, in a good enough way to be a good enough older sister to her.
For instance, just take the older sister/younger sister Q and A that ought to have taken place but never did after I was 14. My own menstual periods took me by brutal surprise. In addition, I never did learn “the facts of life” (ie sex) as we called it in those days, not for real, not so I understood them, until after college. I vaguely knew the “birds and the bees” but not really, not so I understood the fundamental mechanics of sex at a time when most teens were experimenting with relationships for real. (Not me… I went to an all-girls high school and even though it was not necessarily true for the other students, for me, sex was never on my mind, I never understood the urge or the drive, not then and frankly not ever…) Given those facts, you can see that the OS/YS tête-a-têtes about sex and dating etc just were not going to happen. I didn’t know enough, one, and two, even if I had, I was unprepared to talk about anything so intimate with anyone.
As it turned out, though, Martha had plenty of friends and soon clearly found people to talk to when I could not. Thank heavens, because if the roles had been reversed, she could have taught me plenty! Only they could not be reversed, because I was the OS and she was the YS and things had to stay that way… I think to this day, though she doesn’t say it in so many words, she misses, if not resents, losing the OS, the me she once had…She misses surely the OS promise she knew I made to her from the outset.
Oh, Martha knows it wasn’t my fault. Life is life and shit happens. But she misses me, the Pam that never quite panned out because of everything that “happened” after I turned 14, 15, 16 and then it went on and on and on…She reminded me recently that even before I was taking any medication I told her that life was a minute by minute, hour by hour, day by day struggle just to survive…and I was only 24 or 26 or…This horrified her. To this day she can scarcely bare to recall my telling her. Or of seeing me catatonic in the State Hospital. She left crying and I think could not bear to visit again for years…
We create our reality, people tell me. Our thoughts are very powerful…If so, I created from a very young age, a very harsh reality, one where in cahoots with a punitive God, I had learned over the years I had to be selfless to the point of self-obliteration, as well as nearly mute. But not so mute as to be noticeable…because if you were noticed then you were not completely self-less. (I told you it was a harsh world…) I had to speak just enough so as to NOT be noticed, but never about me or my concerns. ONLY about others…and then listen to their problems ONLY. I had to be a pair of ears pinioned to the wall. Wear drab no-color colors, unnoticeable. Fade into the woodwork, but only in a way that was unremarkable…As soon as someone noticed that I was fading, it was evil! and I had to add just enough color to fade into the crowd anonymously yet again, self-lessly.
No wonder my handwriting almost disappeared into invisibility. (I would have willed my fingerprints away if I had been able to!) Can you imagine my mortification, and the self-mortification I had to practice when bank tellers noticed the minuscularity of my signature and made me sign checks a second time? They NOTICED my attempts to disappear, and in doing so, made me appear loud and big…which was bad. So the voices took it out on me, making demands that had to be answered and hidden in turn.
Why am I writing about these things? Because despite the pain it has caused me, I still believe in self-denial. I believe in self-lessly doing things for others, and in NOT being the center of our own universes ALL the time. I think a good bit of doing for and thinking about others in THEIR universes is good for the soul, so long as they do not abuse you. And I do not believe that others need to know everything good that we do. I do not think we need to broadcast every good deed on Facebook or to our friends so they know what good people we are! So what if it remains anonymous, or between God and you? Maybe even God doesn’t need to know it if you do something for someone else…and that someone else doesn’t need to know who did it either.
Live with the anonymity. You can do it. You can be self-less once in a while and not die. Your self is strong enough tolerate not telling the world everything you do for others…Trust me. You do not need kudos, confirmations or smiles for everything you do. You just need to know that someone else is better off because you did something or gave away something you could have used, but decided to give it to someone else instead. You sacrificed something. Not that you gave it away because you could not use it but because someone else needed it more than you did.
Try it, a little sacrificing especially in the United States is a good thing to learn. But make it real, don’t do it falsely. Giving up time or giving away something you don’t use or have any need for is no sacrifice. Sacrifice: from the Latin, sacer, “holy” plus facio, facere, “to make.” Something is only a sacrifice, something is only made holy, if it is a real loss and a real gift at the same time.
So many times gurneyed in by ambulance and police escort
“dangerous to self or others,” and too psychotic
to cooperate or scribble consent, you suspect by now
you are just a GOMER to the snickering scrubs in the ER
who whisk you in back with the other disruptives
lying in beds, waiting for “beds.”
One time you dip paranoid into the inkwell of your purse
extracting a paring knife more amulet than effective protection,
they strip-search you, then, unblinking, eyeball you all night
through a bulletproof plexiglass window.
In the morning, 15-day-papered so you can’t leave,
they send you ominously upstairs.
Later, at home, the voices decree your left leg
should go up in flames to atone for the evil within,
and you listen, and you do it, you do it:
the searing flare of cobalt actually crackles.
This time you tell no one, the char too deep for pain,
until fear of worse trumps your fear of being taken away.
This is not the story of your life.
It’s not the story of your life–
but every time a hulking goon squad clamps restraints
around your flailing wrists and ankles, threatening
to prosecute you for biting those hands that shackle you,
you wonder if there will be any other…
© Pamela Spiro Wagner. All rights reserved (Please note that I request that you do not reblog, reprint this poem or save this poem for anything but personal use. The rest of this blog post may be used if you credit Wagblog properly.)
A new reader, Rachel, has had training as a nurse, and is not reluctant to share her insights from the other side of the gurney, so to speak. Her comments have been enormously illuminating to me and contain so much helpful information that I have asked her if I might post them on Wagblog itself so others might have the opportunity to read them “first hand.” I have collected all of the ones here at Wagblog (there are others on my http://www.aboutschizophreni.blogspot.com site) and will try to provide some context for each one so they make sense, if they do not by themselves.
This first comment was in response to my post, AM I CRAZY…Nov 4, 2012 — when I doubted the veracity, of fact if not experientially, of what happened to me at the ED last summer.
Here is what Rachel wrote:
“OH….. Pam. I completely relate to this post…
Is anything more traumatizing than not being able to trust your own perceptions? I don’t think so.
I have so much swirling around in my head that I could say about all this, it’s hard for me to sort it all out, but I will try.
15 years ago I went through nursing school. One of the things that was greatly impressed upon us in our training was the fact that medical charts are Legal Documents – therefore, you must be ultra-careful about what you write in the charts! Also, there is so much charting and other paperwork required, to meet the legal demands of insurance, etc., that it is truly impossible to do the charts “right,” and still find time to do the actual job of patient care. So… just because important happenings are not recorded in your medical chart, that should by no means be taken as proof that it did not in fact happen, in some fashion.
As for that security guard…. sigh… I’ve led a strange life… about 20 years ago, for part of one year, I worked as a security guard in a bank. The security guard who trained me was one very scary dude. All he did was talk about his wonderful collection of guns, and his beloved hobby of shooting those guns, and bragging that he would have made a satisfying career out of being a hit man, if it weren’t for these pesky laws against being paid big money to commit murder! I became so alarmed by this fellow’s homicidal rants and ramblings that I told our boss all about it. The male boss, a retired U.S. Marine, dismissed my concerns out of hand. “People who talk about killing never do it,” he said.
A few months after I left that job, the hit man wannabe shot his fiancée. It was an accident, of course, he having so little experience with guns….
I am so sorry for this latest cruel trauma you have endured, Pam. Just being treated so roughly is enough to put any person at risk of losing touch with reality. As the late Viktor Frankl, MD, PhD, survivor of nearly 3 years in Nazi concentration camps, said in his life-changing book, Man’s Search for Meaning: “An abnormal reaction to an abnormal situation is normal behavior.”
I believe that is probably what happened with you this past July. You were thrust against your will into an abnormal, traumatizing, soul-annihilating situation, which undoubtedly unleashed multiple memories of similar traumatic indignities in the past. You were being treated, not with the kindness and compassion that you needed and deserved, but with palpable disdain. Harsh thoughts and hateful emotions are communicated, far more than with words, via body language, facial expressions, the eyes, the tone of voice, the “vibes” – even a so-called dumb animal instinctively knows when it is not safe, when the people in charge are not to be trusted.
A nurse, concentrating on giving injections in the proper way and in the proper amount, is not going to be paying any attention to what exactly a security guard is doing, or saying. Also, if she realizes after the fact that she gave an injection for which the order had already been cancelled, I am sorry to say that too many nurses, AND nurse instructors, are NOT going to admit that in the chart. I know this, for I’ve witnessed it firsthand. It’s sad, it’s illegal, immoral, and potentially deadly dangerous , yet it is true.
As for having a run-in with a security guard who has a homicidal attitude? I’m sorry to say that they are not at all uncommon, either.
Did your terrified, traumatized mind fill in the blanks with words he did not actually say, as a way to make some kind of sense from what he had done to you? Maybe. But the fact remains that your autonomy, your power, your rights as a human being, were taken away from you, and you were thrust into a terrifying, traumatizing, abnormal situation. For you to be put into such an extremely abnormal situation, particularly in light of all the old trauma memories it undoubtedly evoked in your mind, an abnormal reaction on your part in such an abnormal situation is, really, truly, Normal Behavior.
My response to her comment:
All I can say to these things, Rachel, is WOW! I may have to rethink my blog post. Maybe some of what I thought was not delusional but did in fact happen. For instance, I wrote so often that I got those 3 shots. Now I am thinking, maybe i did indeed get them, because why would I pass out so immediately from a mere 20mg of Geodon and 1 mg of Ativan. But with 5 mg of Haldol added it would make more sense.
As for the guard (I refuse to call them security guards as they provide NO security and are in my opinion out of control thugs) I think he may indeed have compressed my neck, if only by holding me down in such a way as to restrain me roughly. Whether or not he intended to strangle or kill me, I dunno. And I have no idea whether or not he said those words, only that they do echo precisely what those nurses said or I hallucinated they said over the hospital PA system about my phone call, which they claimed to have recorded and were also replaying over the same PA system…So if those were the same words, perhaps it was only a hallucination. But perhaps only the words, not the rest of it. Thank you SO very much for validating as much as you have. I truly appreciate your contribution to this site and hope you will continue to offer what you know and have experienced. It is so welcome!
Rachel’s next comment was in response to my two new artworks: first the Killer Nurse collage, and then the Monet “take-off” of Argenteuil boats at evening…:
…Killer Nurse, HAHAHAHA! When I was in nursing school, a group of my fellow students dubbed themselves (oh you are going to love this): “Sisters of No Mercy.”
They were, too! By the way, I was elected class president by my fellow nurse students, an honor I did not seek out. When I realized by the end of the first semester that I am not cut out to be a nurse, I thought I could not let down my much-younger classmates who had honored me so, by dropping out! Thus I kept slogging doggedly away, and made it through to the bitter end, making all A’s or 4.0s, I’ve forgotten now how we were graded. Then I took the final big test that determined one’s eligibility to get a license, shocked myself by scoring in the top 1% in the entire nation, gave the big Class President year-end speech at graduation, got my diploma, obtained my license, and…. I worked 3 or 4 days as a nurse, hoping to get my money’s worth out of my costly education, but I still wasn’t emotionally cut out to do the hard job of a nurse and I knew it, so I abruptly quit, and let my license expire.
If you have to be a “Sister of No Mercy” to make it in that profession, you can count me out!
Then her latest comment is again in response to my blog entry titled AM I CRAZY? and my response to her first comment.
You are most welcome, Pam, I’m so glad my words could help.
I just want to add this, though: most of the security guards I worked with so long ago were very good people. There was only a small percentage of guards who had that scary macho-swagger itching-for-trouble attitude. You find people like that in every segment of the population, as I’m sure you know. But it truly did seem to me that a higher-than-average percentage of such types are drawn to work that allows them to wear a uniform and carry a weapon and push people around. These types are more like children playing at cops-and-robbers, than adults doing a serious job.
On a typical day, standing around in a security guard’s uniform watching the world go by is the most boring job on the planet. When finally “something happens,” these “Make My Day” gung-ho types come alive, and in the worst way.
As for the job of nursing… that’s a very different thing. I worked for a couple of years as a nurse’s assistant, before I finally went to nursing school. Nursing is HARD. Really, it’s an almost impossible job. There are never enough nurses, meaning most hospitals and nursing homes are chronically understaffed, and therefore there is never enough time to get everything done that needs doing. The work is absolutely overwhelming at times. You can work your entire shift at a flat-out RUN and STILL not be able to do it all, and do it “right.” You need 6 hands, you need a stomach made of cast iron, you need a backbone made of steel, and you need feet that can take an unbelievable pounding.
A person can go into nursing with a heart of pure gold, caring and compassionate and empathetic to the max, and the day-in-day-out unrelenting MISERY you see all around you will either kill you, or make you harden your heart in self-defense. As a nurse in a busy hospital, a nursing home, and most especially in an emergency room, the world is one big gaping aching wound, a bottomless pit of sorrow and need, and nothing you do is ever nearly enough. You need to be in 10 places at once, doing 10 different things, and almost everyone demands and criticizes, if not the patients, then very often their family does the complaining.
Stay in nursing long enough, and it is almost impossible to hang on to both your sanity, and your heart. This is why I could not do it! I only worked one week in an emergency room, this was as part of my nurse’s training, and that one week of non-stop, often life and death emergencies, almost did me in!
As I read your vivid, beautifully written description of what you endured last July, I could SEE it in my mind. In the eyes of the nurses, you were not a suffering human being with worth and dignity and rights no less important than their own, you were merely an unwelcome interruption, a problem to be dealt with, quickly and firmly and with a minimum of fuss and paperwork. This was not YOUR fault, it was the fault of the system, for want of a better word.
But knowing how HARD nursing is, does not in any way excuse the harsh, hateful, disrespectful attitude you were shown.. yet it does, in my mind at least, explain it. I have seen and experienced it myself, from BOTH sides of the medical charts, this harsh, disdainful attitude.
I have witnessed this, both as a nurse-in-training, and as a patient. When you’ve been called from the bedside of a child whose body was crushed less than an hour ago in an automobile accident, and his mother is dead, his father is hanging by a thread, and if the child survives, he will most likely never walk again… and here is a patient who has nothing visible wrong with her, only she is “inexplicably” freaking out – the disdainful, put-upon attitude from the medical personnel who simply do not “get” the first thing about the very real horror of psychological distress, is very real. It’s not your imagination, and it’s not your fault, either. It’s just that they don’t get it, and they are overworked and exhausted and stressed and overwhelmed with the horrors of life in the trenches.
I hope you know what I am trying to say here? To you, in your time of extreme duress and suffering, the snappy bitchiness and cold-heartedness of the medical personnel, coupled with the terrifying physical roughness of the guard, must have felt so very personal. But YOU were not the real target, in my opinion. The nurse was probably (inexcusably!) bitchy because she was already behind in her duties when you were brought in with your immediate pressing needs, and the guard was probably an overgrown boy playing macho-cop-wannabe, who finally got to see some adrenalin-pumping ACTION.
Someday, if they live long enough, that guard, and the nurses, will become old and infirm, and they will most likely experience, in some fashion, what it is like to be the one who is disempowered, hurting, fearful, and in need of compassionate help, while being treated like they are nothing more than an unwelcome interruption, a pain in the ass, an unimportant, non-person. Someday, I believe, it all comes back around. At least, that’s my hope!
Finally, the following comment concerns my post “Open Letter to Dr Deborah Weidner (Sept. 9, 2012)”
The memories this post brings back…. I was shaking inside as I read it. It was hard enough going through this kind of mistreatment as a powerless teenage girl in a state mental institution, I can’t imagine going through this now, at the age of almost-60. I’m so sorry you were put through this. Until I read this just now, I thought your emergency room mistreatment of last July was the worst you had gone through recently. But this…. I don’t know how you came through it. I think if this had been done to me, I would have permanently checked out of reality.
Your feistiness is what’s keeping you alive. The very thing in you that the “wardens” of the mentally ill want to drug and shame and torture out of you, that undying spirit of yours is why you are still here, still breathing, still functioning, and still able to coherently tell your story. You are amazing.
TO FORGIVE IS
To begin 要寬恕的實是太多
and there is so much to forgive: 頭一樁要算
for one, your parents, one and two, 你父母那麼偶然的一或二次
out of whose dim haphazard coupling 於幽暗中的契合
you sprang forth roaring, indignantly alive. 你呱呱來臨,憤然降世
For this, whatever else followed, 為此, 為這帶來的一切
innocent and guilty, forgive them. 無意也好作孽也罷,寬恕他們.
If it is day, forgive the sun 若是白天,寬恕太陽
its white radiance blinding the eye; 原宥它的奪目光芒
forgive also the moon for dragging the tides, 亦要寬恕月亮帶來的潮汐
for her secrets, her half heart of darkness;原宥它的弔詭.它的暗晦
whatever the season, forgive it its various 管他冬夏秋春.寬恕季節的多端侵擊
assaults—floods, gales, storms 水患,疾風,暴風雪
of ice—and forgive its changing; 原宥它的更替變易
for its vanishing act, stealing what you love 它的掠奪行徑
and what you hate, indifferent, 把你所愛所恨無情的奪去
forgive time; and likewise forgive its fickle 寬恕時間
consort, memory, which fades 同樣地原宥它的變易不忠,連記憶也不放過
the photographs of all you can’t remember; 以至你把擁有的拍照忘得一乾二淨
forgive forgetting, which is chaste 寬恕失憶
and kinder than you know; 它實是忠貞和比你所認知的仁厚得多
forgive your age and the age you were 寬怒年齡
when happiness was afire in your blood 原宥當年的你,那時幸福在血液沸騰
and joy sang hymns in the trees; 喜樂在樹 叢間高唱聖歌
forgive, too, those trees, which have died; 寬恕那些逝去的樹木
and forgive death for taking them, 原宥奪走它們的死亡
inexorable as God, then forgive God 若感上主不仁,則寬恕上主
His terrible grandeur, His unspeakable原宥祂畏人的堂皇和禁說的名字
Name; forgive, too, the poor devil 亦勿忘寬恕那倒霉的撒旦
for a celestial fall no worse than your own. 他那屬天的失足並不比你的過犯糟糕
When you have forgiven whatever is of earth, 當你把地上天上水裡
of sky, of water, whatever is named, 有名的無名的
whatever remains nameless, 通通寬恕了
forgive, finally, your own sorry self, 最後切記寬恕
clothed in temporary flesh 那包裝在短暫肉體內
the breath and blood of you 血氣正在消亡的
already dying. 悔疚的你
Dying, forgiven, now you begin. 垂死,被寬恕的你,現在要重新開始.
By Pamela Spiro Wagner, “Divided Minds” 胡思亂想
Chinese Recreation/Translation by Kenneth Leung Sep 3rd 2012, Labour Day Scarborough, Ontario
I received the email below very recently, explaining the poem above. The only thing missing is the translation of the title, which segues on purpose directly into the first line, and so it too is essential. I hope that Jackie’s father might one day provide that title line. Nevertheless, I am thrilled that anyone likes the poem enough to translate it. Thank you so very much, Kenneth Leung. And thank you Jackie, for sharing it with me and allowing me to share it here.
“I recently picked up your book “Divided Minds” and I couldn’t put it down. Thank you for sharing your story with the world. I’m an Occupational Therapist working in community mental health on an ACT team, so I interact regularly with people with schizophrenia. Your story allowed me to see how difficult it is to first accept a diagnosis of schizophrenia, and then the difficulties of adhering to treatment. I especially love your poem on forgiveness and shared it with my dad, who translated it into Chinese. I thought you might be interested in posting it on your blog so Chinese readers can enjoy it.
I am reposting the next one, a very painful if a not very skilled drawing, because I made some changes. I put a very mean smirk on the face of the woman in the front, who is meant to be facing us and pointing over her shoulder, though it was hard to get this in, given how little space I’d left myself… Also, I wanted to change the face of the man kneeling on me, and strength the look of the grip of the hands on me. If you compare the old version to this one, you will also note that I am purely naked here where as in the other, I have underpants on. This is the accurate one, but I didn’t understand that at the time I started the drawing. Alas, or perhaps this is good, I am rapidly recalling things I had not for two years about my experience at Middlesex. At least I remember stuff that happened BEFORE April 28th. For the other two restraints incidents, I still have no recall whatsoever or what I suspect is mostly confabulation drawn from what I read in my chart, though of course I cannot be certain. In any event, what I am remembering is not good at all, and I cry a lot…it is very difficult, and I feel so very very alone, because NO ONE understands and can talk to me, or more to the point can even stand to listen to me talk or cry about it. But it is difficult even to keep it under wraps all the time. If you have survived trauma, I think you know how it is. And that is why I avoid people when I think I cannot be “good enough company.” I don’t want to bring my friends down, but I cannot control the tears and shakes when they start…But the picture forthwith. Although it is disturbing as is, be aware that in the real incident, there was a great deal more violence, and more guards and staff members involved…these are just a paltry few. I simply didn’t know how to draw a crowd or a crowded room yet!
This next picture I did as an attempt to express the guilt and shame I feel over having been traumatized at all. But I do not think I succeeded at all. Why? Because it became too intellectualized, with symbols like the Scarlet A and the guilt-crucifix, and even the hands wringing in shame, rather than pure expression…I want to do it over again if I get inspired to do so.
The next three drawings were just “fun” or for practice ones. The first two are presents for Tim, simply because he likes cars and is so wonderful to me. The third was an exercise in drawing two people together, and was copied from an “old master”, the name of whom I simply cannot recall at the moment. It might have been — nope I don’t dare guess! I would have to get up and search for the book, and I ain’t gonna do that at the moment — too danged lazy. Anyhow, here are 1) two 1973 Volvo Sportswagon ES 1800 2) jaguar XJS and 3) the sketch taken from the old master’s painting.
NOTE: As I wrote this, “dream” talk, that is to say, nonsensical writings seemed to keep appearing in the middle of what I wrote. I seemed to find myself in another world every few minutes. I would write about that world, then “come to” and start writing about the subject below again as if nothing had happened. But when I reread the paragraph it made no earthly sense whatsoever, being an amalgam of two entirely different trains of thought. So a caveat: if some of what follows devolves into gibberish at any time, forgive me, and be patient. You can email me to alert me, if you wish, that would help. But otherwise, know that I will eventually come back more able to proofread and catch such idiocies…and fix them. For now though, you are on your own. (The reason for these brain blips, I think, may be, but may not, the fact that I took a very small amount of Zyprexa today in order to be able to read and concentrate. 2.5 mg 2X a week should not make me gain weight, according to Dr C, But we thought it might do some good, without doing the usual harm. So I agreed to try it out once more, just at the minimal level as a PRN. Well, I find that I am very sleepy, have been ever since I took the pill, except for when I took a walk and for about 1/2 hour afterwards…and I do think that I slip into dreamworld while awake, and literally dream while writing this. Hence the gibberish.
I have put the statement I read to the CEO and various administrators etc of Middlesex hospital on Youtube if anyone is interested in hearing it read outloud. Do a search for “Psychiatric restraints and seclusion abuse” and you should be able to find it if this link doesn’t work: http://www.youtube.com/watch?v=vhZybDwMbzA (I realize that I read it without much feeling, but it is hard to do so accurately and also look up at camera, and read without losing my place. Anyhow, it might be worthwhile to check it out.
The newest sorta development in the “case” this week was that a lawyer from the hospital, or someone who told my advocate he was a Middlesex Hospital lawyer, asked Wiley R (who is behind me 100%) “what does Pam want, what can we do to have her drop the complaint or withdraw her complaint to the DOJ and Joint Commission?”
Now everyone I told this to almost to a one, and immediately said this meant, “We are willing to pay handsomely in order to buy a gag order from her” I had trouble digesting such crassness, but to a one, those to whom I related the words of this inquiry told me the lawyer was insinuating something about paying me off. I mean: money. I felt slimed, completely slimed. For a few days this was the sole topic of my conversation, but to make a long story short, after I had decided to ask for several sessions with the hospital psych unit staff, educational sessions with me, to teach them how better to deal with patients, and have them experience forced restraints themselves…and so forth, my brother and I met with WR my advocate from the Protection and Advocacy (for persons with disabilities and mental illness) Office, and he informed us that the lawyer really was offering nothing, not even an official apology. Clearly, if so, then my real desire, to do hands on, face to face work with the staff that had so tortured me, was going to be out of the question, utterly forbidden. So we just decided in practically the same words, to let them “swing” in the wind.
In point of fact, when WR said that the DOJ might bring them up “on charges” if it was warranted, I asked him why I didn’t do that myself. He looked at me, and then narrowed his vision looking at a point beyond me. “Hmm, let me ask around and I’ll see what we can do.” I hastened to assure him that it wasn’t malpractice I was after. I knew that I had no real case, even if the statute of limitations hadn’t just run out a week or a few weeks ago. After all, what lawyer is going to take me on one a contingency basis, and what jury would find for me in any event, seeing as how I did not die in their “care” nor suffer “grievous BODILY injury” which of course is all that counts…as usual. I am not sure what sort of case I would have in any sense of the word now at all…But as I told him, that is in his hands, and certainly is his bailiwick (and if not his than that of my lawyer-friend, Sharon Pope’s. If there are other “cases” to be made of any sort, I am more than game, I am ready and on alert to go and do whatever is needed in the pursuit of justice and reform of the Middlesex Hospital psychiatric system. It was really shameful, and despite the Public Health Department’s so called investigation, it was such a shameful joke, that despite WR’s impassioned plea to investigate MY case, and the psych unit in particular, they did no such thing. All they did was go back to spring 2011 (ie looked at the records of the entire hospital, or one of two representative records from most of the units, except for Psych so far as I could determine…) and do a random case study to look for general evidence of irregularities. Sure, they found some, and one case even involved the ER use of unnecessary or at least excessive use of restraints in a dually diagnosed young man…
But NOTHING was even looked at that had anything to do with what they did to me, or even the psych unit in particular. NOTHING was specific to my complaint, so I don’t know how they expected this evaluation to give them any sort of reasonable results. They may or may not have censured or sanctioned the hospital. I did not read the entire huge file of support the bill got over the years. But I got the drift and the worst punishment meted out for repeated violations seemed to me to be a whipping on the wrist with a flimp ramen. Period.
Yet I was punished by the psych unit staff time and time again.
I know, I know! I was loud, I was angry, I was impossible to “handle” — I know this. Partly this was par for the course for a Lyme disease flare up for me. But I think Lyme wasn’t all of it. Why else was I so irascible (aside from them giving me Abilify without the requisite Geodon…) if not in response to perceived and real threats from them? I am not generally irritable and snappy at Natchaug, and never was at Hartford Hospital in the 80s and 90s. ONLY at hospitals where the standards of care are coercion and control and abuse is the name of the game do I react with anger and hostility…I wonder why.
More to tell, more to say, but as I wrote in the first paragraph above, sleep is overwhelming my desire to do just about anything. I will try to get back to this asap.
This piece and many others will be on exhibit at the Wethersfield, Connecticut public library from May 1- June 30, 2012. Another new small sculpture below will be in the display case, along with The African Queen of Paranoia, which may be seen if you do a search for it on this blog site or go to my photobucket artwork site, and small jewelry or pill boxes I made with reproductions of my artwork on the tops.
I made this bird because I wanted simply to make a hummingbird. But after I did so, it reminded me of the poem “Of Mere Being” by Wallace Stevens.
by Wallace Stevens
The palm at the end of the mind,
Beyond the last thought, rises
In the bronze decor.
A gold-feathered bird
Sings in the palm, without human meaning,
Without human feeling, a foreign song.
You know then that it is not the reason
That makes us happy or unhappy.
The bird sings. Its feathers shine.
The palm stands on the edge of space.
The wind moves slowly in the branches.
The bird’s fire-fangled feathers dangle down.
Speaking of Wallace Stevens, here is a poem I wrote that one of Stevens’ lines inspired. It will be in my next book, LEARNING TO SEE IN THREE DIMENSIONS (saison d’enfers means “season of hell”)
by Pamela Spiro Wagner“For the listener, who listens in the snow…”
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
But there was the wind
There was still 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 held long in their wood
Changes change us: rings of birth, death, another season
and we hold on for nothing and no reason
but to sing.
Although most of this post was written and posted back in 2011, I have both edited it and written an addendum, especially for the students in Holly C’s course, with whom I will be doing a Skype class on Monday. If others do not want to reread the post and wish to skip to the end where I have placed the addendum, feel free.
First though, please be aware that descriptions and names of places and so forth have been changed back to their originals except for the names of some people involved, such as my doctors. Those names are somewhat similar, but still disguised. In Divided Minds, we were forced by the publishers to completely disguise everyone, including their physical descriptions, and to make amalgams in some cases, taking two doctors and blending them into one. In Blacklight, by contrast, I am determined that my descriptions of people, previously altered in order to “protect them,” will be honest and forthright, rewritten so that while their names may be changed, their descriptions are as aboveboard as memory makes possible. After all, I write nothing but the truth as I remember it. I wrote a fair amount in my journals at the time and I referred back to my notes there in writing this. What is more, I intend no libel and in fact, I want only to be fair and to bend over backwards in giving as much credit as possible where it is due.
I am delivered like a piece of mail to the Hospital of St Raphael’s, on a stretcher, bound up in brown wool blankets like a padded envelope. It’s the only way the ambulance will transfer me between Norwalk Hospital and this one. The attendants disgorge me into a single room where de-cocooned, I climb down and sit on the bed. All my bags have been left at the nurses’ station for searching; this is standard procedure but I hope they don’t confiscate too much. An aide follows me in to take my BP and pulse, and bustles out, telling me someone will be back shortly. I sit quietly for a half an hour, listening to the constant complaint of the voices, which never leave me, sometimes entertaining me, most of the time ranting and carping and demanding. A thin, 30-something woman with curly blonde hair, rimless glasses and residual acne scars that give her a kind of “I’ve suffered too” look of understanding, knocks on the door-frame..
“May I come in?” she asks politely.
“I can’t stop you.” My usual. Don’t want to seem too obliging or cooperative at first.
“Well, I do need to take a history, but I can come back when you’re feeling more disposed…”
“Nah, might as well get it over with.” Then, nicer, I explain, “I was just being ornery on principle.”
“What principle is that?”
“If you’re ornery they won’t see you sweat.”
“And they won’t expect you to be medication-compliant right off the bat.” I shrug my shoulders but grin, I want to think, devilishly.
“I see you have a sense of humor.”
“You should see me…”
“I’m sure we all will. A sense of humor is very healthy. But it worries me that you already plan not to take your meds.”
“I’ll only refuse the antipsychotic. Look at the blimp it’s turned me into.” I haul my extra-large tee-shirt away from my chest to demonstrate. Fatso, Lardass! Someone snipes. She doesn’t know it but you really believe you’re thin. Ha ha, you’re a house! Look at yourself! LOOK at yourself! Ha ha ha ha! The voices are telling the truth: I know the number of pounds I weigh is high, outrageously high for me, having been thin all my life, but I haven’t lost my self-image as a skinny shrimp, so I can’t get used to being what others see. The voices love to remind me how fat I really am. Only the mirror, or better, a photograph, reminds me of the honest to god truth, and I avoid those. I avert my eyes, or search the concrete for fossils, when approaching a glass door. Anything not to be shocked by what I’ve become. Pig! Glutton! It seems they don’t want to stop tonight…
I realize suddenly that I’ve lost track of the conversation.
“I don’t think they’ll allow you to do that for long.”
“Don’t you remember what we were talking about? Were your voices distracting you?”
“Just thoughts, you know, plus some added insults.”
“You’ll have to take all your meds eventually.”
“Then they’ll have to switch me to a different pill, even if it’s less effective.”
She sucks the top of her pen and looked down at her clipboard. “So,” she starts the formal intake. “What brings you here to St Raphael’s?”
The voices break in there, again, confusing me. When I can get my bearings I tell her what made me transfer from Norwalk Hospital and why I opted for shock treatments. She takes a closer look at the mark of Cain I’ve burned into my forehead, writes something, then corrects me.
“We like to refer to them as ECT here. ‘Shock treatments’ brings to mind the terrible procedures of the past. These days you feel nothing, you just go to sleep and wake up gently. I know. I assist at the ECT clinic.
“Oh, I know, I know. I’ve had ECT before. I know what it’s like and it’s a snap. I asked for this transfer because I hope it will help again.”
We talk some more about why I’m here and what I’ve been through and the voices keep to a minimum so there’s not too much interference. She says she’s going to be my primary nurse and that she thinks we’ll work well together. I nod, thinking she’s pretty okay, for a nurse.
I’ve arrived after lunch, which is served at 11:30am so someone brings me a tray and I pick at it in my room. People come in and out of my room but only speak to me a second or two before they leave, a doctor does a cursory physical, someone takes me down the hall to weigh and measure me. I return to my room, too scared to do otherwise, constrained by the Rules of the voices. The first break in the afternoon is medications in the late afternoon, when someone tells me to line up in front of a little window near the nurse’s station. When it’s my turn, I look at the pills in my cup. Ugh, 20mg of Zyprexa, an increase, plus a host of other pills I can’t remember the names of. I hand the pill back to the med nurse. I’m not taking this, it makes me fat, I say. Give me Geodon. at least I don’t put on weight with Geodon.
“Sorry, Dr Kroeder has ordered this one. We can’t just go around changing doctor’s orders. You either take it or you refuse.”
I was in a quandary. I hadn’t even met the doctor and already I was fighting with her? Should I take it and argue with her later? But then I’ll eat my whole dinner tray and more. Better to start off with my principles intact, so she knows what I’ll take and what I won’t take. I hand the pill back. ”Sorry, I won’t take it.”
“If you decompensate further we will have to give you a shot, you know that, don’t you?”
“I’ll be fine.” I do a little dance step.
“Yeah, and look what you’ve done to your face. Come closer.”
Wondering what she wants, I lean in gingerly, fearing her touch, but she only takes a tongue depressor and smears some ointment on the big oozing sore.
“You’re done.Go eat some supper.”
At 4:30? That’s pretty early. I can’t cross the threshold of the dining room, the Rules the voices make forbid it. I cannot enter the milling crowd, suffering little electric shocks every time my body makes contact with another. Instead I retreat to my room. Sitting on the edge of my bed again, I wonder what to do. How can I get supper, or any meal, if the voices won’t let me go into the dining room?
Just then, the thin blonde nurse with the glasses, what’s her name, leans into my room. “Aren’t you hungry? There’s a tray for you waiting outside the dining room.”
“They made a rule I can’t eat with other people, and I can’t get in the dining room…So I can’t eat.” I read her name tag. “Prisca.”
She smiles and glances down at the tag on her chest. ”Oh, just call me Prissy, everyone else does. I hate it, but what can you do? What are you talking about? There’s no such rule. For now, I guess I’ll let you eat in your room, but that is against the rules and we’ll have to get you into the dining room eventually, whatever the voices tell you.
She brings in the tray: white bread with two slices of bologna and a slice of cheese tossed on top, a packet of mayonnaise, a small green salad in a separate bowl, with a plastic slip of French dressing, and a packaged Hostess brownie for dessert. I didn’t eat lunch, though they brought it in, so even this impoverished repast looks good to me and I eat everything, despite not having taking the hated Zyprexa. I curse myself for it, of course, and do some leg lifts and crunches for exercise afterwards. Ever since I’ve been refusing the drug, I have lost weight. Now I am down to 155 lbs from 170 the last time I weighed myself and I intend to get much thinner, since I started at 95 before medications over the years slowly put weight on me.
After supper the voices start in again, louder and louder, telling me how fat I am, how disgusting and terrible I am. I notice the clock hanging on the wall, which ticks audibly punctuating each sentence. The voices were carping, now they are threatening, and demanding…Finally, their all too familiar sequence segues into telling me I’m the most evil thing, and they don’t say person, on the planet. I’m the Ogre that ate Manhattan, I’m Satan, I’m a mass murderer, I killed Kennedy and deserve to die, die, die!
I’m wearing a heavy pair of clogs with wooden soles and almost before I can think about it, I know what to do. I heave one up at the clock, hitting it dead center. It crashes to the floor. Scrambling to grab a shard of the clear plastic cover before the staff comes running in, I lunge towards where I saw the largest piece fall, one with a long jagged point. I have my hand closed around it when someone tackles me from behind. He’s not very big and I can feel him struggling to keep me pinned. I almost succeed in stabbing myself, but he manages to engulf my hand with his two and press them closed against the flat sides of the shard.
Other people crowd into the room now and they pry the shard from me and grab my arms and legs so I’m completely immobilized. Then at a word murmured by one of the male aides who have materialized out of nowhere, they swing me up onto the bed, like pitching a sand bag onto a levee. I scream but they ignore me and strap my ankles and wrists into leather cuffs which have been rapidly attached to the bed frame: four point restraints.
I continue to scream and scream, but nobody pays attention. A nurse comes at me with a needle, saying it is Haldol and Ativan and proceeds to inject me. Although I am still crying that I want to die, that I’m Satan, the Ogre that ate Manhattan, that I killed Kennedy, I’m the evil one, the room then empties, except for a heavy-set café-au-lait sitter, who hollers louder than I do that her name is Caledonia. She pulls up a chair in the doorway, pulls out a cosmetics bag and proceeds to do her nails in spite of me.
I am told by Prissy that I scream most of the evening and keep the whole unit awake until given a sleeping pill and another shot. All I remember is restless twilight sleep coming at last, broken when a short sandy-haired woman, dressed in a sweater set and skirt, comes in and takes my pulse. I’m groggy with medication but she speaks to me nonetheless.
“I’m , Dr Kroeder, your doctor. You’ve had a bad night I see. Well, perhaps tomorrow we’ll get a chance to talk.”
“Get me out of these things!” I mumble angrily. I can’t sleep like this!”
“”Not yet. You’re not ready. But try your best to sleep now. We’ll re-evaluate things in the morning.”
Then she turns and is gone.
As I get to know her, I will like Dr Kroeder for her kindness, toughness and honesty, but I will hate her too for opposite reasons and it will be a long time before I know whether the liking or the hating or something else entirely wins out.
The first thing that makes me know ECT is going to be different at St Raphael’s than where I had it before is that we all have to get there on under own steam rather than travel in wheelchairs, the way I’ve known since childhood all hospital patients must travel. We walk there, all of us, down interminable corridors, around several corners, through doors to more of the same. In short by the time we get there I have no idea where we are. I said it was a snap when I had it before, but now I feel like a prisoner going to the hangman, a “dead man walking.” Something about our going there in a group voluntarily, by choice and yet somehow not totally by choice, makes it feel like punishment, like having to cut your own switch, not a medical procedure at all. This sets my nerves on edge. When we finally get to the rooms clearly marked “ECT Suite,” instead of the doctor being ready for us, no time to anticipate or fear what is ahead, we have to wait and wait and wait. We’re told the outpatients have to be “finished up” first. My apprehension grows. I’m used to getting to the ECT rooms and immediately climbing up on the table and getting it over with. Waiting and having time to think about it brings me close to tears.
Finally four in-patients are to be taken. I think the nurse calling us in senses I am too anxious to wait any longer, for she makes sure I’m with the first group. I clamber up on the table, and see Dr Kroeder looking down at me, smiling. I notice how white her teeth are and the little gap in her shirt across her chest as she bends over me, strapping something over my forehead as Prissy puts a needle into the heplock already in my arm. I feel my arms and legs quickly cuffed down by others in the team, a mask clamps down over my face and I’m told to breathe, breathe in deeply and I breathe and breathe and a chasm in hell opens and the demons reach out and scream as I plummet past into a terrible inky blackness…
I wake up a second later and immediately vomit into a kidney basin hastily held out by a nurse. “Why didn’t you do it?” I cry out, confused. “Why didn’t you do it, why did you made me wait? I can’t go through this again!”
Strangely, Dr Kroeder has disappeared, and so have Prissy and the nurses that had surrounded me just an instant before. Instead a plump, baby-faced older nurse smiles as she takes away the kidney basin and says, kindly, “You’ve been sleeping soundly for an hour. They did the treatment already and you’re waking up. How about trying to sit up now?” Slowly, I push myself to a sitting position and swing my legs over the edge of the table. No dizziness, no more nausea. I feel okay, except for a slight headache. So I slide off the table and ask where to go. Surely they won’t make me stay a long while this time. The nurse leads me to a wheelchair and asks an aide to take me back to the unit. Ah, a chair at last. At least I’m not expected to walk on my own after that ordeal.
ECT Takes place on Monday, Wednesday and Friday each week and though I vomit many times upon waking up, that is the least of it. What I dread most is the anesthesia, how I plunge from perfect alertness into the dark pit and feel like I wake a second later, sick and confused. I grow more and more afraid until, at the end of a series of 8 sessions, I refuse to go on to a second series. I thwart this by grabbing something to eat every morning, which is forbidden as you cannot have ECT if you have eaten or drunk anything within 12 hours of hte procedure. Because my symptoms are still severe and Caledonia comes to sit with me one to one more often than not, Dr Kroeder tries to persuade me, but I am adamant. I am not depressed (quite despite what she tries to convince me of). ECT hasn’t helped my obsessive intrusive thoughts/hallucinations this time so no more of it. No more! Then she threatens to have the next series court-ordered and to add insult to injury, she says she will force me to take Zyprexa as well, the drug I so hate. I explode.
“What! You f—ing can’t do that! I’m a free citizen, I’m not a danger to myself or anyone else.”
“In fact, I can do it, and I am going to do it, whether you like it or not. You need more ECT and unfortunately you refuse the only drug that is effective for you. Pam, look, how can you say you’re not a danger to yourself? Look at your forehead! That’s not the mark of I it’s just self-mutilation. Look at where you carved that mark into your hand when we weren’t watching you carefully enough. Isn’t that danger enough?”
“But I’m NOT going to kill myself. I don’t want to die. I just want to be disfigured so no one will want to be around me and they’ll stay safe and uncontaminated.”
Dr Kroeder’s eyes suddenly glitter and she has to blink a couple of times. “Well, I’m not going to let you continue to do what you want. Period.”
She was standing at the foot of my bed, one foot on a lower rung, casually holding a clipboard. But she moves closer to me, standing to one side, the clipboard clasped business-like across her chest. Gazing intently at me, she shakes her head in what appears to be sadness. I’m not sad, I know what I have to do. I don’t understand why she feels this is so terrible, but I know enough to remain quiet. Finally, she turns and quietly slips out of the room.
This alarms me; it shocks me. I know she means what she says. Worst of all, Dr O’Maloney, my outpatient psychiatrist, has signed off on it well, agreeing it is the only thing left to do, that already I’ve been in the hospital two months and little has changed, that the situation is desperate. Their only problem is that to get a court order they have to get me a conservator who will agree to it. They want to appoint my twin sister and they discuss with her whether or not she’ll agree to forcing more ECT on me, in addition to Zyprexa. Despite fearing that I’ll hate her, she too is convinced there are no other options.
So Dr Kroeder wins and I endure eight more ECT sessions. Finally I’m discharged a month later, much improved, so everyone says. As a condition of my release, I promise that I’ll continue to take Zyprexa. Forced to, I do promise, even though my history clearly suggests that I will not. I’m also supposed to return once every two weeks for maintenance ECT treatments and Dr Kroeder threatens me with a police escort if I don’t comply. But this time I thumb my nose at her. So, she’s going to get both the Hartford and the New Haven police involved? She thinks they are going to bother to arrest me just to drive me down to the hospital for ECT, something they themselves probably consider barbaric? J’en doute fort. I doubt that big time! In fact, after a call to the Legal Rights Project, I learn that any conservatorship was dissolved the moment I was discharged from St Raphael’ s and that the doctor has no power over me at all now, zilch. So I write Dr Kroeder a nice apologetic letter — sorry, doc, but no more of your ECT for me. Ever.
Several months later, hearing command hallucinations, I pour lighter fluid over my left leg and set it on fire. So much for the restorative powers of shock torture, excuse me, electro- convulsive therapy.
The first time I had ECT was in 2003 at John Dempsey Hospital, which is connected to the University of Connecticut’s medical school. There, in desperation, because of an “obsession” — and I say that advisedly, because I was not so much obsessed as consumed — with the face that I saw in the biohazard sign (which we called the biohazmat man in DIVIDED MINDS) as well as a little red figure I saw running through it, I asked whether something like ECT might help me. The head psychiatrist of the unit wasn’t certain, it wasn’t commonly used for that. But he was willing to try it nonetheless. It took some doing. I was very scared, and the procedure scared me even more, as it turned out that a “heplock” had to be placed in your arm hours beforehand, so a needle could be easily inserted and anesthesia given later during the procedure. But this frightened me and I balked. I also balked at signing various papers. I almost backed out, and rescinded permission at least once. But finally I went through with it.
The actual ECT was near torture, both because of my terror of anestheisa and also because at Dempsey Hospital absolutely no attention was given to the comfort of in-patients, so that we were made to wait until afternoon before our treatments, meaning that we could eat neither breakfast nor lunch on those days. Or at least we could not eat until the treatments were given. Since meals in-hospital loom large in importance, especially when there is little else to do and one’s medications induce hunger, this was a huge problem, particularly when I was already very apprehensive. I never did understand the rationale behind this. It seemed to be particularly bad planning to have any ECT patient have to have treatment so late in the day, given that fasting was essential. But hey, who was I but a mere mental patient? I had no rights, I just had to do what I was told!
Anyhow, I suffered the agonies of hell, but I went through with it, hating each session, until, after I’d undergone five of them, I began to complain that my memory was being affected. I decided to stop, but I noted at the same time, strangely enough, that the biohazmat man had also disappeared from my radar. Weird! It seemed to have worked, ECT had broken the back of what had been consuming me. In point of fact, ECT at that time worked so well that the biohazard sign has never bothered me again in such a fashion. Which is close to a miracle in my book.
Tyrant, they called you, emperor, bully,
the first time I was in the psychiatric wing.
You finger-painted, yes, getting down on your knees
to smear pigment with stiff abandon
but afterward, in the hall, when I froze, contorting,
you let the whole world of the ward know
your scorn, imitating me, calling me “crazy.”
I seemed finally better. I came home.
But when I failed you, leaving med school,
an embarrassment and a humiliation
who couldn’t even keep work as a clerk or waitress,
you claimed suddenly “three children” not four.
Between us interposed silence for thirty years
as I learned to live on $3 a day, to write my life
into poems when I had words to share.
Years passed in “the bin” and out “on the farm,”
as I called the hospital and those programs by day
that structured my life. But hospitals shape-shift
after a dozen or more and there are decades
of my life that are lost even to memory,
each melding into another like shadows
on night-lit walls in carbon paper alleys.
One keyhole through which I see the past:
Shock treatment with its drowning anesthetic drops
and stunned awakenings. Then there you are,
standing in the seclusion room door
resuming conversation as if begun just yesterday
not thirty years before, no older, or at least
no grayer than “Daddy” again, shorter, yes,
but kinder. What could I do but respond?
I never dreamed that at eighty-three
you’d lose your fire, habanero, old Nero,
or that I, Rome, would ever stop burning.
The above poem tells a long story in a few words, though necessarily only part of it. I have to leave it there for now, as I lack the energy to flesh the story out further. But in later days, after the memorial service and as the spirit moves me, I will try to write more. Thanks for your patience. As a good friend said, It — grief, tears, feeling alone or lost– comes in waves, but when it hits, it hits hard…
Poems can express many ideas and experiences. In my first book of poems, We Mad Climb Shaky Ladders, part of CavanKerry Press’ Laurel Books literature of illness series, I tried to express how I felt both during psychosis and afterwards. I also often tried to put myself into the experience of others who experienced symptoms that I might not, but which I could imagine.
One thing I know, having had this illness for so long, is that misinterpretation is rife. I mean things when I do things, just as anyone else does. But people simply make assumptions about my behavior and forget that they might need to ask why I do what I do. I have often asked others why they did whatever strange or seemingly outrageous thing they did, and lo and behold there has always been an understandable rationale behind it. For instance, when I stripped naked in that freezing seclusion room, I was neither “acting out” nor totally around the bend, no, my reasoning was that if I were naked they would have to give me something to cover myself with, i.e. a blanket, which is what I had been begging for all along. But they never asked me why I had taken off my clothing — a flimsy tee shirt and lightweight jeans. They just assumed — whatever they assumed. Ditto for almost every other interaction I had with them, and the same almost uniformly went for other people when they behaved in a way that was somehow contrary to expectations. The meaning of their actions was reasonable, given the context.
I tell you this because in my poem, Word Salad, even though it appears to be, well, “word salady” and incomprehensible, in truth there is “method” to it, and in fact if you read it with a mind towards understanding the links, you would appreciate them. But you might have to “surrender” to getting it, and let it in without trying to rationally, intellectually understand. Only afterwards could you perhaps try to figure out what precisely is being done and said in the poem. One clue you might need, if you have not been subjected to this directly is that often, at least in the past, “patients” of a certain kind were asked to interpret proverbs. “Can you tell me what, ‘A rolling stone gathers no moss’ means?” or “What does ‘People in glass houses shouldn’t throw stones’ mean?”
As for Grandiose, the same thing holds. Read it aloud and try to get the sense of it, how it reads. Then you may in fact understand what is going on “in one blow,” so to speak. It is full of double entendres, on purpose. Remember that “live” can be pronounced in two ways. Both of these hold.
“Word salad,” a term used for the completely disjointed, incomprehensible language sometimes seen in schizophrenia
Unpinned, words scatter, moths in the night. The sense of things loses hold, demurs. Everything means. Numbers soldier with colors and directions, four by four in a pinwheel: this is the secret wisdom. I inscribe it on sacred sheets of paper. The Oxford Dictionary holds not a candle. The self reduced to a cipher, a scribble, the Eye is all, with a Freemason’s lash, and 26 runic hieroglyphs to share how a stitch in time saved the cat and if a messy rock gathers no stones, clams must surely be lifted higher by the same rising boats. Why, why not throw glass tomes at grass huts? It is a question of propriety: grass is too dignified to lie down before gloss. Whirligig! How to pull the center back into the world? It would take all the OED to recapture the moths, all Harcourt’s English Grammar to pin them again. GRANDIOSE He says: I was always more important than you though with your cutting me down to size quarrel about just who I thought I was. I thought I was with my long dark hair and beard and rough working clothes John the Baptist, prophet of God wild man of the wilderness and would have to preach the word of a savior I didn’t quite believe in. I mentioned my conviction to a friend who told me to make friends with a mirror, discover which John I really re-incarnated. Lo, I looked and saw the more famous than Jesus John staring with his small important eyes behind his too small eye-glasses at me staring into the mirror at myself, yes, I wrote the songs you grew up on: Yesterday, Give Peace A Chance, Eleanor Rigby— yes, I was the one you swooned over and screamed for, yet now you only shriek at me, taking me down from a peg on the wall. Why do you yell, Get lost, baby? Imagine all the people who would rejoice to see me live once more.
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.
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 blue 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
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.
Poetry demands surrender,
language saying what is true
doing holy things to the ordinary.
Read just one poem a day.
Someday a book of poems may open in your hands
like a daffodil offering its cup
to the sun.
When you can name five poets
without including Bob Dylan,
when you exceed your quota
and don’t even notice,
close this manual.
You can now read poetry.
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.
TTFN or TaTa For Now
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:
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!)
TO FORGIVE IS…
and there is so much to forgive:
for one, your parents, one and two,
out of whose dim haphazard coupling
you sprang forth roaring, indignantly alive.
For this, whatever else followed,
innocent and guilty, forgive them.
If it is day, forgive the sun
its white radiance blinding the eye;
forgive also the moon for dragging the tides,
for her secrets, her half heart of darkness;
whatever the season, forgive it its various
assaults — floods, gales, storms
of ice — and forgive its changing;
for its vanishing act, stealing what you love
and what you hate, indifferent,
forgive time; and likewise forgive
its fickle consort, memory, which fades
the photographs of all you can’t remember;
forgive forgetting, which is chaste
and kinder than you know;
forgive your age and the age you were
when happiness was afire in your blood
and joy sang hymns in the trees;
forgive, too, those trees, which have died;
and forgive death for taking them,
inexorable as God; then forgive God
His terrible grandeur, His unspeakable
Name; forgive, too, the poor devil
for a celestial fall no worse than your own.
When you have forgiven whatever is of earth,
of sky, of water, whatever is named,
whatever remains nameless,
forgive, finally, your own sorry self,
clothed in temporary flesh,
the breath and blood of you
Dying, forgiven, now you begin.
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.
night and day
to a teetotaling
bog; whose noisy
lieder of drink
and bawds last all
of water striders
dimpling the surface
of the black pond
with the quick ribbon
of his tongue;
who after all
is not a Prince
in disguise; who
suffers himself to be
pithed for science;
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
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,
waiting for the one car to cross the bridge
whose toll is so high we all pay with our lives.
Tonight I’m up late worrying
about a badly canned chestnut puree
and botulism, which is useless
since I’ll know soon enough from
what the Merck Manual describes as
“difficulty speaking or swallowing,
drooping eyelids, double vision,
lassitude and weakness progressing
to paralysis” that I have it
or not. Not very likely with only
130 cases in the U.S. in a year,
but as I said, I worry, and worry attaches
to anything: leprosy, asteroids falling
from the sky, dirt on your hands.
Most people worry too much
about things that won’t matter
after six months. My friend doesn’t
have to worry about those. He is
losing his speech to Lou Gehrig’s. In six
months who knows what won’t work
any longer or which will matter
most. His assistive device says
the words he types, but how I miss
the sound of his voice, which I’ve forgotten
except when I call and the old
machine picks up: Joe speaking.
I can’t answer the phone right now
but I’ll call you back as soon as I can.
But still worth reading.
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