I went off my psychiatric meds over the course of several months without a problem to speak of, until I was off them for a week, when two things happened. First off the withdrawal dyskinesia (see brief video above) was getting better, but I was beginning to feel, well, nothing, no motivation, no pleasure, no enjoyment in doing anything. I know that many people do not do well on Abilify and hate it, in which case I would say it does little good and to stop taking it. For me, ever since I started taking it in 2006 or so, I have had motivation to start doing and learning art in a way I never felt before. And each time I stop it, no matter how fast or slowly, I go down the hole into no motivation or pleasure in anything. I do not like this situation at all, because Abilify also causes me severe double vision, but but but, I must say that i helps me do things, to finish things, to enjoy the process. I do NOT have any idea why this is, but it has always been so since I started the drug, and I can no longer bear being off it, despite the side effects and disapproval by others. Whatever the damage that years of first generation neuroleptics have done to me, this one drug seems to help me do what I want to do..
.Hate me or not as you will, I cannot bear not taking it. Without it I have no impulse to do art or write, and my life is shit. Is that really what I should be satisfied with?
Let me introduce myself. My name is Pamela S. Wagner, and I was for most of my 65 years a resident of Connecticut. I have a long history diagnosed with serious mental illness and have been on disability for many years because of it. Five years ago, I was admitted to the Hartford Hospital’s Institute of Living on a 14-day PEC. I would like to tell you about some of the grotesque brutalities that transpired there and the egregious “treatment” that passes for care in that hospital.
Ever since I was discharged from the Institute of Living in February 2013, to which facility I had been committed as an involuntary patient under an order known as a Physicians Emergency Certificate. I have felt too terrified even to read the partial chart which the Connecticut Office of Protection and Advocacy obtained for me. Indeed, every time I recall what I am able to, or reread the brief nursing notes about what was done to me that winter at the IOL, my heart races unbearably, my body sweats and shakes and I start crying. Even so, because of trauma-induced amnesia, I remember the month I spent there only vaguely and in “snapshot” or flashbulb-like moments” of clarity. It is only now that I have acquired these few records, and learned some of the details of what happened that I’m finally able to put some of the pieces together.
Before I say anything further, I want to say that I believe that I was grievously injured by the “treatment” I received on Donnelly 2 South, and that what the staff did to me was not only unethical and cruel but that it crossed the line into illegality more than once.
I was admitted to Donnelly 2 South, and right from the first I made it clear that I wanted to witness their searching my knapsack. I wanted to know what they confiscated from me. They assured me that, Yes, of course, that is our policy, Don’t worry, Pam, you will have ample opportunity to watch us search your bags… I calmed a bit and followed a nurse to a closed room to do an intake interview. When she released me to the Day Area, I was shown to my room, where I found on my bed, my already searched knapsack and bags. Needless to say, this upset me greatly and I made my feelings known, which did not endear me to anyone. I let the charge nurse know that I felt violated and that she had openly broken a promise and my rights, posted prominently on the hospital wall.
As the Donnelly 2 staff learned, I had arrived prepared with a detailed Psychiatric Advanced Directive and I made it very clear that my online electronic medical record was accessible from any computer. I made the Read-Only access code available to the doctor and nurses. That included documents such as my narcolepsy diagnostic consult and special documentation proving my need for a higher than usual dosage of Ritalin, written by my former sleep specialist (also my psychiatrist from 2000-2009.) Included as well was a letter she wrote to my present psychiatrist, Dr. C, explicitly stating her conviction that I do not, and never did have a personality disorder, borderline or otherwise, a conviction that Dr C also held.
According to Dr. Sanjay Banerjee, the doctor who first took over my care, he read every page of these and all the other documents that I brought with me. That is what he told me. Moreover, when he spoke with Dr. C, my outside psychiatrist, he brushed off my concerns about anyone misperceiving me as having a personality disorder. My brother, P, himself a psychiatrist, brought the same matter to the fore again when in discussion with Laurie Denenberg, LCSW. Again, her response was much the same: “Personality disorders are not a part of the picture here. We intend to honor her PAD. We are glad that she has had the foresight to prepare such a document.”
Nevertheless, Amy Taylor, MD, the doctor who took over my care after Jan 27th decided to summarize my psychiatric history from this stay in words such as these: “long psychiatric history of schizophrenia, paranoid type, PTSD, and personality disorder NOS with borderline traits.” I was treated for four weeks for an active psychotic disorder. No one could know – especially with the significant additional diagnosis of PTSD, whether or not I had any personality disorder, given the two Axis I diagnoses already present. I believe she decided to use this diagnosis as a way to “justify” the brutality that she had ordered to be used to punish me during the hospitalization I write about.
As I said, I was on the Donnelly 2 unit for almost a month. But I was admitted on January 10, 2013, right into to seclusion because of putative “blepharitis.” They called it “infection precautions” but never took a culture of my swollen eyelids to determine if there truly was any infection present. They simply said it had to be blepharitis – as if saying so meant that it was so (but the fact is that blepharitis generally speaking is a benign non-infectious condition, and one that doesn’t produce massive swelling in the entire facial region). There were other factors however that accounted for my swollen face: prime among them the self -inflicted second degree burn on my forehead the size of a half dollar. Knowing this, the fact that my face had swelled to 1½ its size should not have surprised anyone. Blepharitis? The doctor was looking for zebras instead of seeing the common nag right in front of her…
I know I was a difficult patient. I was loud and paranoid and hard for some staff to deal with. That is precisely why I wrote out my Psychiatric Advance Directive the way I did, with explicit and detailed instructions for how best to deal with me when I was upset… When ill, I am frightened, paranoid, and hostile, which makes me easily roused to irritability. I know this, from a distance as it were. But knowing this now does not mean I was in full control of my behavior at the time.
On Feb 5th, I was being held incommunicado in the so-called “side room”, which, when I called it seclusion, the staff insisted it was not so. That afternoon, I simply walked away from it. I had had enough of them saying it was not seclusion, then preventing me bodily from leaving it. So, when I could do so without someone actually wanting to fight me, I walked away.
I proceeded to enter the unit and walk down the hall to the end and looked out the window. I took a deep breath, heard staff behind me, and sauntered back to the proper end of the hall, the “lost end” where they kept anyone from seeing me or knowing what they were doing to me. Once I got there, they descended upon me, some staff I knew, but most I did not. I did not bother to look at who was doing what to me. I simply lay passively on the bed and put my arms where they could do what I knew they would do. Tightly, they shackled my wrists out past my hips so there was no play in the restraints and I could not turn on my side or do anything but lie stiffly on my back. At the same time, others jerked my feet apart and just as tightly shackled my ankles to the lower corners of bed. Then came the coup de grace. They twisted me over onto my side somehow, pulled down my pants, and injected me with three drugs: Haldol 5mg, Ativan 2mg, and Benadryl 50mg. Why, except as punishment I do not know. I had, just a half hour before, been doped up on involuntary Zyprexa 10mg. Then they walked out, leaving someone just outside the door for the usual monitor, and did not release me for 19 hours, despite the fact that I was sleeping much of that time.
Of course, this was punishment. The very fact that they told me it was “not punishment” only “what your behavior brings on every time, Pamela,” proves my point. At first and usually they only said, it was because I “didn’t follow directions” so if they were not punishing me, what were they doing? They most certainly were not following Centers for Medicare and Medicaid regulations for the use of Restraints and Seclusion only in cases where a person is in imminent danger of harming her self or others. Indeed, the best they could do, when I protested, passively, saying just those words, was to respond, “You are not safe” as if that proved somehow that I was in danger or posed any imminent threat to the safety of anyone.
They always restrained me in an X, spread-eagled so tightly I couldn’t move a muscle. They never permitted bathroom breaks or even let my hands free to eat, so several times I had to pee and even defecate in my clothing. I would fall asleep rapidly after those three injections–whether I was restrained while calm or not, it was routine: punishment needles in the buttocks of Haldol 10mg, Ativan (up to 5mg at one time) and Benadryl 50mg—and then they would invent reasons to maintain me in restraints even after I was asleep for hours. When I woke, hardly dangerous to anyone, they would grill me with questions that I was too groggy to answer, and they would use my inability to respond as reason not to release me.
Later in the evening on Jan 5 or 6thth, for the second time that day, they restrained me, this time for throwing half a graham cracker at the wall. Then they left me like that for hours, even after I fell asleep. In point of fact, I could never earn my way to release from restraints by good behavior or quietly, calmly asking for release. Of course not, because I hadn’t done anything to “deserve” them in the first place. They always refused to release me, always, until I cried, “Uncle” when they told me to.
As to those vaunted “shows of force” what does anyone expect? Presented with a cohort of threatening staff personnel I saw only one thing: an impending assault. I know they anticipated my panic; it said as much in my chart. Isn’t that the point of a planned “show of force” – to induce fear and panic? (which when you think about it is grotesque…What sort of person wants to induce fear and more panic in someone who is by definition already terrified?) But why else do it? So why should it be any surprise, when I defended myself as they grabbed me? When they stuffed me into a body bag and were trying to tighten the straps, surely you can understand why anyone would bite the hand of an attacker whose digits came near. It was a matter of life and survival instinct…
But none of it should have happened. My PAD explained in exquisite detail exactly what to do and what I respond to better than fear tactics and force. In fact, it is beyond comprehension, knowing that one of the admission diagnoses I came in with was PTSD, how the director of patient care at the time pre-approved on paper the emergency abrogation of my PAD and a “just in case they are needed” use of restraints and seclusion. Why didn’t he counsel the person asking for this advance “right to restrain” to do instead all in his power not to restrain me and to work with the PAD instead?
TO BE CONTINUED… SEE NEXT ENTRY.
Click and it will re-orient itself properly! This is beautifully done! Brava, Mercy!
AFTERWARDS, WHAT THE MOTHER SAID
I was happy when those green birds
flew shining into my garden.
I thought it meant that Allah had smiled
and fate would be kind.
But the grindstone turned.
For my son, the struggle was all. I did not know
the meaning of his great determination
to be al shaheed al hayy, “the living martyr.”
The small birds clung to the line
for nearly an hour
before they hurled themselves to the sky
in a great shrill.
Now I can think only of the gore
of innocents on a shredded shirt
I’d washed the night before,
the blood on his Quran left on a bench nearby.
I was ashamed when asked
to claim him as my child.
You ask me
am I happy my son has joined the martyrs?
Do I rejoice to be the mother of a hero?
Who cares of heroes or martyrs
I have lost my son.
May those whom he murdered forgive me.
Inshallah, we will not meet again,
no, not even in Paradise.
But had I known of his plans
I would have taken a blade, sliced open my heart
and crammed him deep inside.
I would have seamed it tight to seal him in.
I would have never let him go.
Copyright Pamela Spiro Wagner 2017
Excuse the poor video quality here though the sound is fine. Not sure whether using the “selfie mode” on my iPhone made the video poor or what?? Anyone have suggestions? Anyhow I would love reactions to my reading below….(Just nothing obvious on how bad the vid quality is. I ALREADY know this! By the way, I made this for David H. and his project in the U.K. so that is why I referred to the Brits in it…
I’ve been thinking about this sort of thing for a while, ever since i first came across the notion who knows when. In fact, i always wondered, even as a child, why this was considered so impossible and the answer given was that “people would become lazy…” to which i had not enough life experience to respond adequately or knowledgeably. Now, however, my own life has given my a tiny hint of whether that answer was correct or not. And my answer comes from a life in which i was provided, by virtue of being “on disability” for decades, a poverty-level income, plus shelter and varying levels of food support. I did not become lazy at all. In contrast, as soon as my life stabilized when i no longer was in constant search for housing and had enough to eat for “the forseeable future” at any given time, i could settle down into my life of low but livable income and i taught myself to write poetry. This was a goal that i could accomplish given that it required very little extras in the way of expenditures, beyond a pen and a notebook and eventually an electric tyoewriter, paper, and a few envelopes and stamps. For 25 years i lived and breathed only to read and write poetry, and became an accomplished poet, with hundreds of poems under my belt.
The one thing that my stable if low income did not do was make me lazy, it did deprive me of many other things, but the basic “security” it provided to me of shelter and food and medical care, however basic level they were, permitted me the freedom at least to write my heart out.
Later, when my income doubled due to a a tragedy in the family that had a positive effect on my social security benefit, once again freedom from penury permitted me to become an artist, because i could buy the art supplies that before that time i could never have afforded.
The point is that people will always do what they do, and want to do, when the chains of utter compulsion are taken off. There is plenty of money in this world, enough to fund a system that takes care of all, if we have heart and soul to do this. The question is, Do we dare?
I remember names…some of them. For instance, the short, chubby, blond nurse, who was worried about her weight and who was so instrumental in torturing me? Her name was Debra. And the head nurse who seemed so oblivious to the fact that her policies were indeed torture, even though she admitted that she expected the guards to inflict pain on patients when “escorting” them to seclusion in order to “subdue them faster” as she put it to me, openly. Her name was Barbara, and even though I was horrified by things she told me, I believe that she was innocently deluded and believed in her job, did not mean to be mean, not the way Debra seemed to, and honestly wanted the best for her patients. But let me start at some beginning which is to say, anywhere at all, and give you an idea of what I am talking about.
I have written in multiple places and on many occasions about what happened to me at New Britain Hospital (aka Hospital of Central Connecticut on Grand Street in New Britain) and I do not want to go into the whole thing here. All you need to do is search on the subject of Michael E Balkunas at this blog and you will get most of the gory details. That said, much that happened has never been told not even here. For instance, that Debra was the nurse who in a sadistic impulse and in an apparent fit of frustration, decided to have the security guards strip me naked when she was secluding me for some unknown (and always unnecessary) reason yet again…as they did nearly daily at W-1 in New Britain Hospital in May 2014….that it was Debra who was directly responsible for this I have never stated. But I remember her name clearly, and her face….And the fact that after she did this the second or third time she went on leave for several days, and when she came back told me she had almost quit her job.
I was momentarily cheered because I thought perhaps she had had some serious regrets about what she’d done to me. I asked her, Was it because of me? I thought she would tell me yes. She looked at me, and nodded, then said, “Because you are such a challenging patient.” Huh? I looked at her, and saw no remorse, no regrets only residual anger and scorn…and a certain unrepentant rancor that I had “made her do what she did.” Clearly she felt that I was to blame for her behavior, that I was to blame in general and that it was all justified.
But to get back to what happened. After she had me stripped naked by four male guards, after I loudly and vociferously protested being left alone in that freezing seclusion cell for I never knew how long, I began mildly hitting my head on the wall in protest. They threatened to four-point me and then they came barreling back in and threw me onto a restraint bed. The thing is, I knew, completely naked, I could not take the cold in that seclusion cell. But if they restrained me they would HAVE to cover me with something, and at the very least I would not freeze to death in that frigid cell for an indefinite number of hours…But when they came for me, they grabbed me and angrily threw me onto a gurney, even though I put up no resistance, spread-eagled my legs, deliberately exposing my private parts, and shackled them to the corners of the gurney with my arms pinioned above my head until I shrieked in pain even as they laughed. Then they held me down, gratuitously I might add, since I was already restrained, compressing my neck and chest, in order to give me the usual three-injection cocktail of punishment drugs — Haldol, Ativan and Benadryl — forcibly slammed into my buttocks. All of this done to me while I was naked and immobilized in four point restraints. Then fearing that they would leave me alone there, freezing cold, I screamed for them to cover me. With a look of disgust, someone threw a draw sheet over me, but no more.
The charge nurse came in for my “face to face” interview to see that all was “proper” and she visibly and audibly shivered, but refused me a warm blanket, or any at all, due to “safety concerns.” Then she left with the rest of them and turned off the intercom, so “we won’t have to listen to her scream.” They closed the door behind them, leaving me all alone behind a metal cell door that did not even have an observation window in it.
I screamed from the base of my lungs as deeply and as loudly as I could for as long as I could last. No one took mercy on me or brought me water or a blanket or spoke to me the entire time. Only when, exhausted, I finally lapsed did they relent and ask, from outside the door, “can we turn the intercom back on? She is quiet now…” And apparently got assent for that… Because eventually I heard someone flip a switch but nothing more.
After I was released, the next day, I told the unit director, Dr Michael E Balkunas what they had done to me, and he must have recognized the egregious nature of it because his response is telling. Instead of dismissing it as not so terrible, he said: “They would NEVER do such a thing as that in my hospital. You are a liar!” So he saw how awful it had been, what they had done to me, he just refused to acknowledge it had happened, and that he did not in fact what his staff were up to. But I was never in fact the liar he believed me to be. His stock answer to everything he did not want to see or believe was routinely that I was lying, but this was not true, and he was so sickeningly dismissive of the truth that I did not wait to listen to more this time. I was so wiped off the map by his response that I got up and walked out of the interview room and did not bother with him from then on…I KNEW I was never a liar, and that in actuality it was the STAFF who lied all the time, but telling Balkunas that would have done no good. He wanted to believe what he wanted to believe and nothing i said got through to him from day one…So I thought, so why bother ? WHY BOTHER. Balkunas wanted to murder my body and my spirit, and I could not let him succeed. He could imprison my body in his hospital, but i was damned if i would let him get my spirit. FUCK HIM!
But Dr Balkunas, Michael, you did not in point of fact know what went on at W-1 ever, nor at the ER, when you were there. Abuse was rampant because you encouraged it to be…and you never cared much what they did to achieve “order” so long as it was “quiet” when you were around. So you gave tacit assent to the tortures that they inflicted, and you likewise tacitly approved the very behaviors that you told me would “never happen on your watch”…Yeah? Well, I feel certain that if they behaved as they did towards me, they had done it before me, and did so to others after I left as well…and they continue to inflict these things on patients to this day.
I will leave it there. Your unit staff and you too, Balkie, are Out of control, and deserve, as my Obama post notes, to be CLOSED down for good.
The other day I made this little polymer clay figure to illustrate what Debra did to me.
It blew me away and I could not sleep all night the night I made her….Until Wendy and I decided to heal her, and perhaps heal me, from the experience, First, talking to the figure in the little bed calmly and with compassion, we covered her with a thick cotton blanket. That brought me some relief as I no longer felt chilled. Then we took off the restraints, which despite being made of polymer clay actually slipped right off, and we brought her arms down to her sides so she could sleep in comfort. By the time we were through I felt immensely better.
Neither of us could even imagine treating another human being as Balkunas had had me treated on numerous occasions by routine.
Please listen to this. You will find Cortland Pfeffers intro fascinating, and of course pamela as usual has much to say!
Here is a little new art to entice, just a small drawing i did while at fhe hostel in Boston during the Hearing Voices Congress. I hope to post that power point soon.
Poems start at around minute 9…If you need or want to skip over my reading of the essay. (!)
This poem is in my new book, LEARNING TO SEE IN THREE DIMENSIONS. Alas this final version did not get there as i had misplaced it and did not find it till after the publication date!
(pour ma jumelle)
Sometimes when you’ve spent hours rushing somewhere
and just as many hours rushing back
you ought to make yourself stop ten minutes from home
ten minutes short of where you think
you can put your feet up
finally, and get out at the road’s edge
and ask yourself where you are
going and where have you been and why
are you hurrying just to get it over with, or is there no point
to this day but in the ending of it?
Ten minutes, this pause
wrenched out of the rush by the roadside
getting the kinks out, lets you hear the sudden quiet
of your own thoughts
as the out-of-doors pours in and gives you pause.
What have you been doing all day
racing, rushing, wasting your time all day
for what, to get what over with?
Better to have rested more along the way,
to have seen, to have been, to have watched, listened
to have paid attention
than to have beeped and swerved so much
sped and sweated in bottlenecks
and cursed the traffic for what could neither be avoided
nor its fault, being its nature.
Where had you been all day
in your hurrying to get home, but on your way
along the only way there was: yours.
Oh, but you should have known better–
how all homes are but temporary shelters:
a roadside shack or leafy park bench,
a ramshackle timber lean-to —
each a place to rest as good as any mansion
ten minutes away. Ten mere minutes from home
the roadside beckoned with saffron mustard sprigs,
brave bouncing bet. But you had no time
to pay attention, so nearly home to rest and relax.
Oh, but you should have known better—
The day scattered like dry leaves
and ended without you.
Now you pay with the rest of your life.
Available at Amazon.com here (dont worry about the different covers, it is the same book!):
This is the finished portrait STUDY of my friend Mott’s grandson Dylan (the final portrait will be in oils but this one is a study done in my note book in acrylics, with the background still a bit wet):
Recently a friend wrote to me that she was exhausted with worry about whether the future would work out as she wanted it to. She has many concerns and young sons to generate a lot of worries, so i sympathize completely. Nevertheless, this is what i wrote to her and more…
Remember that there are plenty of futures out there and we have absolutely no way of knowing which one will come to us as the present, not until it is the present. So you can spend your time worrying in the present about a future you cannot change by worrying about it (can you?) or you can choose to ENJOY THE FUTURE now by assuming that it will all work out beautifully. That means of course, that freed from worrying about a disastrous outcome, you will enjoy the present, too. Yes, it is possible that what comes will bring disaster, but that pain will be of its time and place alone. You won’t have spent all the weeks and months leading up to it also in pain, dreading what your worry could not possibly change. If disaster does happen, but you spent all that time anticipating the best possible outcome, then guess what? You enjoyed your life, and if disaster happens you can say, well, so this is disaster, but i did not waste my life in fear, worrying myself sick anticipating it. No, no, i enjoyed every minute of a different future that may not have happened, but i lived life to the fullest. Now, life changed but i don’t regret a thing!
I believe that people who can enjoy the best future imaginable also build resilience to the worst future that becomes present in their lives, and in a feedback loop they end up never facing the worst outcome, because in the simple process of facing it, and facing it down, they have already begun to overcome it. But they could not do this without learning the skills of enjoying the best possible future now, instead of worrying. This is how they have become resilient and their resilience feeds back and makes them even stronger when like everyone else, challenges do come their way.
You can do it. You can stop worrying today. You can stop that flow of tormenting thoughts that say xyz is going to happen to ruin everything. How? Not by stopping them but by replacing them with daydreams that are far easier and better. You know how some teachers used to scold the class daydreamer and tell him or her to come back to reality and Stop daydreaming?! Well, i am going to say the opposite: when you are worrying yourself sick, start day dreaming instead, start fantasizing about the dreamiest most glorious future you can give yourself, and then goddam it, give it to yourself! I mean this. Start believing that that future is real and think about you would act and be “if you really knew this” it would change you, wouldn’t it? Well…be that future, enjoy that future as if you know right here and now that it will be on your plate at such and such a time…i promise you, you will enjoy your present so much more than you ever did worrying! And who knows, instead of Not paying the mortgage on time (your worry) you just might end up buying a boat as well as owning your home free and clear (your fantasy)…but even if not, you have not lost anything but your misery. And that, my friend, is a very good thing to lose.
New work in progress by pamela spiro wagner, a large collage about 2′ by 3′ made of tiny scraps of torn up reproductions of Gustav Klimt’s artwork and reassembled as my version of The Kiss…