Why the name, Phoebe? asked Inkbiotic in a comment on my last post. Thank you for this question; it meant a lot to me. The name Phoebe is the feminine form of Phoebus, which is Greek in origin and means, “bright, shining, radiant.”
I have not always understood why I needed the name Phoebe, not in fifth grade. But it has always felt “given” to me, and in that sense my True Name. To explain, I offer the last lines of Rainer Maria Rilke’s poem, which ends, in translation, “from here there is no place that does not see you. You must change your life.” These lines have always called to me. They meant that I, my “me-ness,” needed to die to the artificial self and become what it is, a being of love and light, I needed to change the “false self” full of memories, of deep woundings and petty gripes, of anger and dreams of revenge to a self of pure light and boundless forgiveness and love. In a similar way, just so my name change, from Pamela, which is Greek too, meaning “ All Sweet”, but is also a synonym for cloying, to a name that means “radiant light,” because it is only in the light of love that we humans can be seen for who we really are, children of God, the Source, the Force for Good in every human heart.
I no longer accept the world (or my past) of hurt and anger and the urge to revenge. It is gone, over and done with, a figment of my imagination, which is the only place it can live. Falter though I may, my body being only flesh and human, with this name change I hereby offer myself to Change itself, that is to the Infinite, which can be called space or The Void, but which I saw in a vision of beauty is nothing but Creative Love itself.
Remember that we are ALL of us beings of light and life, we are all God, and we all partake of and participate in That Which Creates, the Space or Void that loves everything into being. My name change is only to remind me of the Source from which I came, as did we all, and to which we all return.
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?
who may be sitting as I am
in a green recliner with a cup of tea
staring out through the porch
to a darkened streetlamp outside the diner,
with a book in her lap, mine, I hope
the only one I feel I should have to mention
if I mention a book in a poem I write;
to the reader, the nitpicker, the one
who may be wondering why
on p. 47 there are two ands, one
right after another, and whose fault that is;
and to the reader, who may be tired
after a long ride home on the bus
after dark and a meal not worth mentioning
who picks up my book but finds his eyes
closing before he has opened the cover,
I say: Forgive me
I am only a writer sitting in a green recliner
with a cup of tea, I can’t explain
those two ands or the mysterious
streetlamp or warm the feet of a tired
reader in his bed. I can only put music on
and tell him stories to make movies
turn in his head, to let him wake
with the sudden understanding that poetry
may be all it takes to make a life—
well, my life at any rate, and maybe his,
and maybe the nitpicker’s and yours, too,
staring through the porch to the streetlamp
where what happens so mysteriously is poetry—
and the whole night is wrapped
in the words spoken by two strangers
meeting there, or not spoken, which is poetry too,
and all of us who listen are waiting
for the music of what is to happen.
(Last line, thanks to Helen Vendler)
Mosaic: a word that means from the muses, from Moses
and a work of art created from broken fragments of pottery,
stone or glass.
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.
FORGETTING TO REMEMBER
Multiples: former shorthand for people diagnosed
with multiple personality disorder, believed to arise
from early sexual trauma and abuse; now considered
a dissociative disorder.
Two suicides and such a multitude of multiples
wrung from their imagination the year I was there
by student psychologists eager to make names for themselves,
the halfway facility would be shut down for good the next.
But not before seeds of uncertain certainties were sown:
repressed memories miraculously recovered from the abyss,
of incests, sodomies, satanic abuses, so even my stalwart insistence
on a happy-go-not-so-unlucky childhood
became stained by the sepia of doubt:
had I really escaped such clutches?
Knowing memory’s foibles, it’s hard to trust
what my sister tells me was true: that there really were
neighborhood “Bad Boys” and a shack in the woods
where they kept a stash of comic books and pin-up calendars,
the price to read there all afternoon if you were a girl
a feel, that I’m not wrong to believe I read my fill
of “Archie” and “Prince Valiant” and “Peanuts” inside.
Though I had to find my own way out afterwards
after they’d gone, taking their comics with them,
leaving just June, now unpinned from the wall
in her tiny shorts, the shine of her raspberry lips
pouting next to a tractor, I recall only
dry motes falling through the last rays
of sun, the smoky smell of sawdust and dust,
and grit under my bare feet, my trembling relief,
as I studied a stroll through the back door at home,
perhaps worse for the wear but on time for supper
so nobody questioned the dirt in my hair.
1. Would you rather be beautiful, an astronaut or able to walk up any surface (ie up walls and along the ceiling)? Why?
Definitely I would love to be able to walk up any surface — it would provide such a “superpower” and afford me entirely new experiences.
2. Would you rather physically age, mentally age or visibly age?
At 65 I have been told I do not “look my age” to which my response is, this is was 65 looks like! That said, my mental and intellectual aging are of prime concern to me, and along with that is generally the requirement of good physical health. So if I had to choose for one of the three, I suppose I would opt for signs of visible aging.
3. What was the last good deed you did?
I hate to tell people what the good things are that I do in the world, it is boasting and so I keep these between “my concept of god” and me, where any accounting of good deeds belongs.
4. I’ve been watching the Good Place. It’s great. To give a spoiler-free description, it’s a comedy about a Heaven-like place, where you can live in your ideal house in a perfect village, eat all your favourite foods, and hang out with your soul-mate. What three things wwould you choose to have in your good place?
Good friends, good books, good memories.
5. You get a time machine watch that can only go up to an hour into the past or future. What would you use it for?
If such a machine existed, I would reserve its use personally for revisiting all the times that I have written and sent impulsively some email I should not have, or likewise, to repair words I spoke that might have caused immediate harm. I would not use it to visit the future, as that could tamper with the present big time and also I prefer the future to remain tantalizingly unknown and unknowable.
6. You’re such an awesome person, that the mayor of your town has asked you to come up with a national holiday, what would you want the holiday to be for (eg Tree Day, Festival of Dreams), and when would you want it?
Peace Day would be a national holiday of forgiveness where people are supposed to reconcile and make amends for past conflicts , both on the micro or personal scale and on the macro or international level, where this day is reserved for nations to think and act peaceably towards each other, and make attempts to end conflict.
7. What small something would you change right now?
I would start being able to speak again, having been mute since November 2017…
8. What are your plans for getting older? How do you want to spend your time when/if you stop working? Where do you want to be?
Having been on disability and not working all my adult life, retirement is meaningless, but I hope to be able to do art till the day I die.
9. You find out (probably from a magic floating wizard or by text or something) that nothing you do today will have consequences. What’s your itinerary for the day?
First of all, everything we do has consequences, absolutely everything, it is unavoidable, that is the beauty of what is called The Butterfly Effect. Small changes in a system can have enormous down stream consequences, like the butterfly that flaps its wings in Beijing and by a long series of directly traceable consequences and events eventually leads to a hurricane in the Atlantic. We all always affect others and the world in ways we can never perhaps predict or understand the full ramifications of. So given this, I cannot in any rational way answer this question.
10. When you die your ghost will be trapped in the place of your death, where do you want to die?
Sorry, but this question again leaves me bereft of an ability to answer. I do not believe in trapped ghosts. Energy exists, yes, and maybe we can “leave behind” personal energy that imbues a place, but I do not think one’s Life energy could get trapped in any place just because you died there. And frankly I think your “living ghost,” the life energy and intentionality you project and leave in your LIVING wake is far more important than where you die. We are trapped only insofar as we believe in traps. Ghosts or spirits or just human energy, life is where energy matters, as it warms the blood and invigorates the mind and body. I worry less about where I will die, and whether my “ghost” might be trapped, than that while living I am free in mind enough not to feel trapped or in a prison of someone else making. Freedom is a state of mind, an attitude. Where the body or the ghost is scarcely matters when your mind is truly free.
The biggest barrier to my recovery from what had always been diagnosed as schizophrenia or schizoaffective disorder was, I regret to say, the mental health system and psychiatry itself. Yes, for many decades I had been told I was ill and needed interventions like medications and the hospital for my “brittle psychosis”. I was told even that obvious brutalities, like 5-point restraints and seclusion in locked freezing cold cells, devoid of anything but a slab in the wall and a grate in the floor for drainage, were helpful treatments for my condition and not the torture and punishment that I felt them to be. No one or very few people treated me with kindness or any understanding or with the idea that there was hope for recovery, even though I had a genius level IQ and had shown some significant talents in many areas, and still did even when sick. They seemed bent on only one thing: coercion and control, and to prove that they were able to dominate me, and the other patients. If you dared to question their superiority or their information you would either be dismissed as delusional or worse, treated with more abuse.
Needless to say, I lived up to these expectations for many years, and i did not get better or even come near to recovering. In fact, before I took the drastic step of giving almost all I owned away and leaving my home, the state where I had lived for all my life and moving to another 100 miles away, by myself, knowing no one and nothing about it, I ended up again in the hospital and almost did not make it out. Not only did the guards there attempt to strangle me, but the doctor was convinced that I should be committed to the state’s one public facility that provided long term treatment…from which I might not leave for a long time.
Instead, I managed to play the game this sadistic doctor insisted on, and was finally discharged from a city hospital that had spent weeks doing nothing but torturing me, daily throwing me into their seclusion cell or shackling me in restraints …for no better reason than that I “disturbed the unit milieu”.
But discharged I was, with newly acquired PTSD from my treatment there, and within a week I was two states away, safe for the first time from these ministration that had inflicted on me nothing but damage.
It was here, in this northern state that I finally began to heal, with the help not of the mental health system but of a non-licensed therapist (she has a psychotherapist license from the UK) who taught me Marshall Rosenberg’s non-violent communication or NVC, and is the first person I felt sees me for who I really am, not “just another schizophrenic.” Even though I still take medications, I am slowly tapering off of them and doing well after decades on the massive doses I was told I absolutely could not survive without. Why? Because I’m proof of the fact that you can recover from life-long “mental illness” when given enough unconditional acceptance and understanding. When someone sees you and understands you and does not dismiss you, crazy as you might have been told you are, a lot of the craziness just falls away and you become another human being, no more and no less.
There is no normal, there is no abnormal. We are all just human beings trying to get along in society and often society is sicker than “we are” in its demands that we conform to some impossible standard. Maybe my experiences — hearing voices, thinking things that might be called delusions, etcetera — are not common but they are not outside the realm of human experience either. We should rejoice in our differences as in our similarities and look for common cause between us, not find reasons to fear what is Other in each other. Love really is what it’s all about. Maybe that sounds squishy and sentimental, but have you ever met someone diagnosed with schizophrenia who says they both love themselves and feel that they are adequately loved in the world by others?
Here’s what SAMHSA the substance abuse and mental health services administration publication has to say on seclusion and trauma:
“Studies suggest that restraints and seclusion can be harmful and is often re-traumatizing for an individual who has suffered previous trauma…
“Further, there is a common misconception that seclusion and restraint are used only when absolutely necessary as crisis response techniques. In fact, seclusion and restraint are most commonly used to address loud, disruptive, noncompliant behavior and generally originate from a power struggle between consumer and staff. The decision to apply seclusion or restraint techniques is often arbitrary, idiosyncratic, and generally avoidable.
“Moreover, some studies indicate that seclusion and restraint use lead to an increase in the behaviors that staff members are attempting to control or eliminate.
I have been traumatized, and not just by hospitals. I was date-raped three times in my twenties and experienced traumatic domestic abuse. The cover sheet on the PAD made very clear that due to these trauma issues, I could not tolerate being secluded or restrained without severe consequences: regression and serious worsening of symptoms. Unfortunately, as soon as the staff saw fit to use physical methods of coercion and control on me, that is to say, punishment, from the first time a staff member grabbed me, all bets were off as to how I would behave. I certainly ceased improving, and my symptoms went downhill. Did they really think they were being kind and compassionate? Violence begets violence….
I tried to get help even when on the unit, at least I tried when I was free to make calls or leave my seclusion, err, forced-voluntary “time-out” two-week-long stay in the so-called side room” last winter. I do not know how many times I called the patient advocate office, but the sole time anyone made contact was when she came to hand me some paperwork – I believe I was actually in 4 point restraints at the time – some papers I could not read about a forced medication hearing they would be holding. I needed her advocacy, but she never responded to my panicked called. I wanted her help, but she never came by to ask me what I needed. She was less than useful, the fact that I had to go through her, and her refusal to respond contributed to my ongoing panic and desperate feelings of aloneness and depression. No wonder Dr. Banerjee tried to force me into ECT (about which my feelings of horror and revulsion were stated clearly in my PAD).
And where did the ECT discussion come from at all? My PAD states that I would refuse ECT under any and every circumstance. My brother would be my conservator if Banerjee had sought to go down that road, and he would never have made any decision to counter my wishes on that subject. If Banerjee really read my PAD, he would have known that. He told me that “Dr Mucha and I have made the decision to force you to have ECT.” I recorded the conversation in my journal immediately after it happened and Dr. Banerjee presented it as a two-man decision only, one that I had no choice in.
Regarding ECT and my so-called “depression,” Sanjay Banerjee MD had stopped my 75mg of the antidepressant Zoloft during the first or second week I was there. “Do you really need that?” he had asked, “You don’t seem depressed to me.” Obedient, and in any event glad to get off any medication at any time, I nodded my head, assenting to the change. At least, I thought, if things go haywire, it will not be due to self-fulfilling prophecy, a doctor looking for symptoms he expects to find and conveniently finding them. And at least he will know the reason.
A week later, instead of reinstating the Zoloft, Banerjee blamed my sudden “depression” on my refusal to take Lamictal, a drug I had not taken in 6-9 months. Now he was applying to force me to have ECT, something I was terrified of, convinced it caused deliberate brain damage.
It was this threat, and the brutality with which the decision was made, that started the downhill course of my IOL stay.
The very next day, all hell broke loose. When I entered the conference room, I pushed some important notes I needed Dr Banerjay and Laurie to read across the table in front of them. They refused, claiming that I threw the papers at them. Instead, Dr Banerjay proceeded to berate me, and told me how he had consulted with other hospitals and providers and had read my records against my instructions and Advance Directive, thus violating my HIPAA rights. Moreover, he threatened me with a behavioral treatment plan that would not permit me to do art or writing unless I “behaved.” I hit the roof, telling him I would sue the hospital and complain to JCAHO, then summarily left, slamming the door, an act that stemmed from feelings of utter impotence, because I couldn’t actually say in words anything more effective.
It could have ended there. I could have been left alone, to cool down and calm myself. But no, Dr. Banerjee had to write for stat meds again, and even though I was on the phone and trying to find someone to talk to, to calm myself, I had to be physically dragged off the chair I sat on, away from the phone and brought to the floor in a physical struggle (because they had attacked first, i.e. physically grabbed me, I defended myself, instinctually). They could have waited for me to finish the call. They could have waited to see if I calmed myself. I was not hurting anyone. I did not threaten anyone or myself with harm. ALL that I had done, in terms of physical threats was yell at the phone and refuse to take a pill. Furthermore, it was done and over with. I had left that area and gone to my room. I had then come back and now sat on the chair by the phone, speaking to my interlocutor on the other end. There was no need to pick a fight or encourage a struggle. A wait-and-see policy could have successfully guided things to a better resolution not only for the situation at hand but for my entire hospital stay. As a famous poem by Dylan Thomas ends: “After the first death, there is other.” Once the IOL staff decided to use restraints, there was no going back. The first time broke everything. So, they used them again, and again, and each time more freely and without justification but for convenience and punishment.
Some final points:
CMS regulations on use of Restraint and Seclusion
Restraint or seclusion may only be imposed to ensure the immediate physical safety of the patient, a staff member, or othersand must be discontinued at the earliest possible time.
At no point in my stay was anyone ever in immediate physical danger except me, from the staff who were assaulting me…They may have claimed that I bit and fought and resisted, but this was always in response to their manhandling me first. Always. In fact, my medical records show they had restraints re-evaluated and approved while I was sleeping. They even discharged me from the hospital directly from restraints and seclusion, on a day when the usual attending physician happened to be out of town.
(ii) Seclusion is the involuntary confinement of a patient alone in a room or area from which the patient is physically prevented from leaving. Seclusion may only be used for the management of violent or self- destructive behavior.
This means thatIOL’s definition of seclusion as being “kept alone in a room to which the door is locked” is wrong. I protested that I had been secluded all along, for a good two weeks before they instituted formal seclusion. I was not violent or self-destructive, and certainly not imminently dangerous to self or others…Never was anyone in immediate physical danger.) Yet the IOL allowed staff to abuse me and seclude me because I was loud and made people uncomfortable…I was surely not the first person to be so treated and brutalized. It remains traumatizing to this day, and I know it is still happening to patients at the IOL even now, because no one can stop them if they don’t know it is happening. Due to this sort of brutal treatment, my PTSD escalated. I think about what happened there and I can’t stop trembling. I have nightmares every night that literally keep me from sleeping.
“The highest price of all is the price paid by the people who are restrained: their recovery is stalled by a practice that can disempower them, break their spirit, and reignite a sense of helplessness and hopelessness…” from Recovery Innovations
Worst of all, using restraints doesn’t work to make either the patient calmer and safer or the unit a calmer safer environment to work in for staff. In truth, things only go from bad to worse once you restrain an unruly patient…Violence only begets more violence…Moreover, when I was another hospital, I was told by one of their mental health workers that she had wanted to experience the process of being four-pointed so she could identify with patients. She was told no, because as the aide informed me, hospital administrators feared it would be too traumatizing.
Restraints are traumatizing, let’s face it, in order to restrain me the manifold times I have been brutally restrained, putting up no resistance whatsoever, even the most jaded and brutal should have felt a twinge of conscience and questioned why he or she was doing. Unless they had become so inured to cruelty that they no longer considered it degrading and obscene to spread-eagle a naked woman, shackling her legs to the bed posts, so hardened to sadism that they did not consider tying her wrists to the underside of the bed as torture, only a mild form of discipline, meted out in order to teach her the lesson they had decided to teach her…
I hope you manage to read this letter and look at the supporting materials. You could learn a lot. You have more power than I do in this world, and could change things, if you know they are happening and are wrong. I beg you to think about what I have written to you. The IOL is not an isolated case. Brutality happens in nearly every psychiatric ward and hospital in Connecticut, and I believe this is the reason: As long as seclusion and restraints are permitted in any fashion, brutality and abuse will continue and at rates that are higher than where they are eschewed.
The problem is not that there may remain some exceptional cases who, it is claimed, will need to be restrained, but that someone somewhere will start finding such exceptions and boom, we’ll be right back where we started, with abuse and mistreatment of the most vulnerable. I believe the only way to stop the abuse of seclusion and restraints is to simply stop using them, period. Killing in self-defense is a good defense in law, and every decision to use restraints should be evaluated with similar strict thinking. Say No, we don’t go there, first, and then if done, know that it was a violation of the law and harmed the patient above all else, but under some conditions, this is the lesser evil compared to what might have eventuated without their use.
Now hospital workers are allowed to use restraints and seclusion as legitimate forms of “treatment. But when you permit staff to use violence against even one patient, it imbues their culture with an acceptance of violence as a treatment modality rather than something criminal. Restraints help no one. They are always retaliatory. Always discipline and punishment. Oh, in the short run the unit may seem quieter and easier to manage, but in the subsequent days, when the prisoner in restraints re-enters the community more chaos than ever may ensue.
SPIRO, Marian Wagner, 89, of Madison, CT and Amherst, MA died on June 18, 2017 at the Hospice of the Fisher Home after a lengthy illness. Marian was born in Fall River, MA on February 16, 1928 to Oliver and Carolyn Wagner. She was raised in Fall River during the Depression and graduated from BMC Durfee High School. She then earned a two-year degree from Vermont Junior College that enabled her to work as a lab technician. It was at a lab at Harvard Medical School that she met her husband Howard Spiro. They were married in 1951, made a home in New Haven, CT and quickly had four children: Pammy, Lynnie, Martha, and Philip. In the meantime, she returned to school, received her undergraduate degree and in 1970 began a twenty-year career as a renowned teacher of science and math at The Foote School in New Haven. She introduced computers to her students long before they ended up in their back pockets and once built a solar-heated oven to bake the Thanksgiving turkey. She helped to revive the school newspaper, which was later renamed the “SPI” in her honor. Her dogs were frequent guests in her classroom, and when she wasn’t helping to train her friends’ dogs or hosting canine pool parties in her backyard, Marian was taking her own retrievers to local hospitals or mental health facilities to hang out with patients. Throughout her life, she was known for expert woodworking skills, her intuitive ability at navigating a sailboat, her competitiveness on the tennis court or in a game of bridge or scrabble, her love of golden retrievers, her lasting friendships, and her deep devotion to her family. She never let the social conventions of her day block her dreams: she embarked on a lifetime avocation of woodworking despite being told it was not for girls, she became a teacher of science before most scientists would accept women as their peers, and she even made the phone call to Howard for a date that led to their eventual marriage. She will be sorely missed by her four children: Pamela Spiro Wagner, Carolyn Spiro Silvestri, Philip Spiro and Martha Spiro; her six grandchildren: Allison Spiro-Winn, Jeremy Spiro-Winn, Hannah Spiro, Claire Spiro, Oliver Spiro and Adriane Spiro; and her many friends and students. She follows the passing of her parents Oliver and Carolyn, her husband Howard of 61 years, her sister Barbara, and her brother Oliver. A memorial service will be scheduled at a later time. In lieu of flowers donations may be made to the Marian W. Spiro Fund for Science Enrichment at The Foote School in New Haven, CT or the Hospice of the Fisher Home in Amherst, MA.
The obituary above was written by my wonderful “cousin in law,” Jere Nash, who is Holly Wagner’s husband, my uncle’s daughter (who was my mother’s late brother, Oliver who died many years ago of malignant melanoma).
All that follows is my interpretation of things, as all observation is of course but in my case you have to understand that I speak largely as an outsider, not knowing very much since I was not “in” the family for so many years…
Although I lost many years with my mother as an adult, due to my father’s “exxing” me out of the family in anger and a profound lack of understanding of “mental illness” and what was going on for me at the time, I still remember her in my childhood, how when there were still trolleys in New Haven Connecticut (oh, how young I must have been then!) she would either bravely or completely nonchalantly wear jeans to go shopping downtown at Malleys or whatever the stores were there at the time. For anyone else this would have been extremely difficult, disregarding all the social mores of the 50s dictating that women had to wear skirts and heels and make-up to go out presentably in public. I do not know how my mom felt about it, only that she did it and did not seem to care what others thought. She cared only that she was more comfortable in pants, and low- heeled “girl scout” shoes, the same kind I wear to this day, and she saw no sense in getting all dressed up just to bring 2 very young children out to go on a stressful shopping expedition. As for that, my mother to my knowledge never wore more make-up in her life than a dash of lipstick, though I do remember her applying that with care every morning and blotting her red lips on a fold of toilet paper, thinking both how beautiful she looked (though she never in her life agreed with me or anyone else on this, even though when she was younger — when we lived in England — my friends thought she looked like a “movie star”) and how I never wanted to have to put “that stuff” on my own lips.
Unlike her children, who suffered from oily skin and troublesome largely untreated acne as adolescents, my mother’s bane of existence was her dry skin and its tendency to wrinkle so her one vanity, if you could call it that, was moisturizers and trying to deal with skin that aged earlier than she might have wished. She was also a outdoors lover, a sailor and a tennis player in the days well before the publicized benefits of sun screen, which may or may not have played a role in this (I am not completely convinced of the safety of sunscreens with their nano chemicals nonetheless)…Whatever is the case, it seemed true that her skin did show the effects of being out in the weather early on, but this to me only gave her face character and the true beauty of an older woman…though I know that as I was growing up it may have caused her more regret than I knew.
We are all of us subject to society’s images and social pressures, and my mother was not immune to these, no matter how iconoclastic and “her own person” she may have been in so many ways. For example, as a result of having been a self-described “chunky athletic tomboy with a tiny petite older sister” — and feeling rejected for this all her life, she fought a poor self-image, body hatred, and deep conflict on that account, such that I have always felt that in some sense while she loved food and eating, she also never took a single bite that she did not simultaneously regret and chide herself for. This was painfully obvious to us children, I think, at least it was to me, and it continued throughout her life. Even after nearly forty years of not seeing her, I would go out to lunch with her when she was in her 80s, and hear her criticize herself about what she was eating. How I wished she could simply enjoy food for once, without the concomitant agonies of needing to punish herself for it.
Maybe she got some peace at some point, perhaps dementia granted it to her, but at what a terrible price.
I think that for my mother, one of the sad consequences of being married to a man like my father was that she never felt that he took her intellect or her creativity seriously or even consequentially. True, he got her to go back to college and finish a four-year degree, and take up teaching, but he never truly treated her with the same esteem he granted an equal, and we all felt it and knew it, and what is more, she did too. No doubt this was largely behind all her words of abuse and rage in later years when she could scarcely speak to him civilly even when he had himself ceased to be abusive. It was hard to listen to her snark and scorn him, when he was trying his best…But by then it was much to late to undo the damage his lack of care and cold abusiveness had wrought for so many years beforehand. It seemed to me that she just could not forgive him, especially not for “changing” on her so unaccountably in his latter decades…
This is the rather in-expert poem I wrote for my mother’s birthday in 2007 about all that she gave us growing up…
YOUR OWN OCCASIONAL POEM 2/16/07
You push the wood under the saw,
the sawdust scent is sharp and familiar.
First time in months, you’re in the woodshop;
at the end of the day, you’re sorry to stop.
It’s mid-February, the pale wintry light
has long ago left. You look up. It’s night
and you haven’t appeased yet your hands’ appetite,
their urge to create. I know as I write
that hunger of hands to handle and make,
your children all feel it, the pleasure, the ache.
You taught us love, gave us skills that you knew
copper enameling, pen and ink, too,
the weaving of baskets and papier maché
antiquing desks and working with clay,
sand casting, knitting (you couldn’t crochet).
You fired up a hunger that’s better than food
a hunger that drives us, the right attitude
to make things of beauty, for need and for use.
With paper pulp, wood, fabric, clay, we produce
unique objets d’art not entirely planned.
We make them with care and the love they demand
and when they are finished, we give them away.
(The joy’s in creating; they’re not meant to stay.).
PLEASE go to the embedded link to finish reading JULIE MAD BLOGGER;s following article, which was succinct and brilliant.
“The following is my commentary on a “fact sheet” from NAMI New York. This is some material from the URL http://www.naminys.org/nys/educational-materials/ Here, what you see in italics is what I have copied verbatim, directly off the NAMI page. Here and there I am replying, as I see fit, with commentary of my own, in non-italics.
Here are some important facts about mental illness and recovery:
Please note: Much of what NAMI tells you ain’t facts!
Mental illnesses are biologically based brain disorders. BTW, the “brain disorder” theory was disproven almost immediately after it was proposed. There is no scientific evidence of any brain disorder in those with the so-called major mental illnesses such as schizophrenia or bipolar. They cannot be overcome through “will power” and are not related to a person’s “character” or intelligence. The implication here is that these so-called “brain diseases” are permanent conditions that will not go away on their own nor can they possibly be transient or outgrown. This is false, as many are indeed temporary, or can be overcome by changing one’s life circumstances, growth, maturity, improved physical health, changing one’s environment, nutritional changes, or improving one’s relationships.
Mental disorders fall along a continuum of severity. Even though mental disorders are widespread in the population, the main burden of illness is concentrated in a much smaller proportion — about 6 percent, or 1 in 17 Americans — who suffer from a serious mental illness. It is estimated that mental illness affects 1 in 5 families in America.
Electroshock, variously known as electroconvulsive therapy, ECT, shock treatment, or simply shock, is the practice of applying 70 to 150 volts of household electric current to the human brain in order to produce a grand mal, or generalized, seizure. A course of ECT usually consists of 8 to 15 shocks, administered every other day, although the number is determined by the individual psychiatrist and many patients receive 20, 30, 40 or more.
Psychiatrists use ECT on persons with a wide range of psychiatric labels, from depression to mania, and have recently begun to use it on persons without psychiatric labels who have medical diseases such as Parkinson’s disease.
A conservative estimate is that at least 100,000 persons receive ECT each year, and by all accounts this number is growing. Two-thirds of those being shocked are women, and more than half of ECT patients are over the age of 65, although it has been given to children as young as three. ECT is not given at all in most state hospitals. It is concentrated in private, for-profit hospitals.
ECT drastically changes behavior and mood, which is construed
as improvement of psychiatric symptoms. However, since psychiatric symptoms usually recur, often after as little as one month, psychiatrists are now promoting “maintenance” ECT—one electrical grand mal seizure every few weeks, given indefinitely or until the patient or family refuses to continue.
THE EVIDENCE FOR ECT BRAIN DAMAGE
There are now five decades of evidence for ECT brain damage and memory loss. The evidence is of four types: animal studies, human autopsy studies, human in vivo studies which use either modern brain-imaging techniques or neuropsychological testing to assess damage, and survivor self-reports or narrative interviews.
Most of the studies of the effects of ECT on animals were done in the 1940s and ’50s. There are at least seven studies documenting brain damage in shocked animals (cited by Friedberg in Morgan, 1991, p. 29). The best known study is that of Hans Hartelius (1952), in which brain damage was consistently found in cats given a relatively short course of ECT. He concluded: “The question of whether or not irreversible damage to the nerve cells may occur in association with ECT must therefore be answered in the affirmative.”
Human autopsy studies were done on persons who died during or shortly after ECT (some died as a result of massive brain damage). There are more than twenty reports of neuropathology in human autopsies, dating from to 1940s to 1978 (Morgan, 1991, p. 30; Breggin, 1985, p.4). Many of these patients had what is called modern or “modified” ECT.
It is necessary to clarify briefly here what is meant by “modified” ECT. News and magazine articles about ECT commonly claim that ECT as it has been given for the past thirty years (that is, using general anesthesia and muscle-paralyzing drugs to prevent bone fractures) is “new and improved”, “safer” (i.e. less brain-damaging) than it was in the 1940s and ’50s.
Although this claim is made for public relations purposes, it is flatly denied by doctors when the media is not listening. For example, Dr. Edward Coffey, head of the ECT department at Duke University Medical Center and a well-known advocate of ECT, tells his students in the training seminar “Practical Advances in ECT: 1991”:
The indication for anesthetic is simply that it reduces the anxiety and the fear and the panic that are associated or that could be associated with the treatment. OK? It doesn’t do anything else beyond that…There are, however, significant disadvantages in
using an anesthetic during ECT…The anesthetic elevates seizure threshold… Very, very critical…
So it is necessary to use more electricity to the brain, not less, with “modified” ECT, hardly making for a safer procedure. In addition, the muscle-paralyzing drugs used in modified ECT amplify the risks. They make the patient unable to breathe independently, and as Coffey points out this means risks of paralysis and prolonged apnea.
Another common claim of shock doctors and publicists, that ECT “saves lives” or somehow prevents suicide, can be quickly disposed of. There is simply no evidence in the literature to support this claim. The one study on ECT and suicide (Avery and Winokur, 1976) shows that ECT has no effect on the suicide rate.
Case studies, neuroanatomical testing, neuropsychological testing, and self-reports that remain strikingly similar over 50 years testify to the devastating effects of ECT on memory, identity, and cognition.
Recent CAT scan studies showing a relationship between ECT and brain atrophy or abnormality include Calloway (1981); Weinberger et al (1979a and 1979b); and Dolan, Calloway et al (1986).
The vast majority of ECT research has focused and continues to focus on the effects of ECT on memory, for good reason. Memory loss is a symptom of brain damage and, as neurologist John Friedberg (quoted in Bielski, 1990) points out, ECT causes more permanent memory loss than any severe closed-head injury with coma or almost any other insult to or disease of the brain.
Reports of catastrophic memory loss date to the very beginning of ECT. The definitive study of ECT’s memory effects remains that of Irving Janis (1950). Janis conducted detailed and exhaustive autobiographical interviews with 19 patients before ECT and then attempted to elicit the same information four weeks afterwards. Controls who did not have ECT were given the same interviews. He found that “Every one of the 19 patients in the study showed at least several life instances of amnesia and in many cases there were from ten to twenty life experiences which the patient could not recall.” Controls’ memories were normal. And when he followed up half of the 19 patients one year after ECT, there had been no return of memory (Janis, 1975).
Studies in the 70s and 80s confirm Janis’ findings. Squire (1974) found that the amnesic effects of ECT can extend to remote memory. In 1973 he documented a 30-year retrograde amnesia following ECT. Freeman and Kendell (1980) report that 74% of patients questioned years after ECT had memory impairment. Taylor et al (1982) found methodological flaws in studies that purport to show no memory loss and documented deficits in autobiographical memory several months after ECT. Fronin-Auch (1982) found impairment of both verbal and nonverbal memory. Squire and Slater (1983) found that three years after shock the majority of survivors report poor memory.
The highest governmental authority on medical matters in the United States, the Food and Drug Administration (FDA), agrees that ECT is not good for your health. It names brain damage and memory loss as two of the risks of ECT. The FDA is responsible for regulating medical devices such as the machines used to administer ECT. Each device is assigned a risk classification: Class I for devices that are basically safe; Class II for devices whose safety can be assured by standardization, labeling, etc.; and Class III for devices which pose “a potential unreasonable risk of injury or illness under all circumstances. As a result of a public hearing in 1979, at which survivors and professionals testified, the ECT machine was assigned to Class III. There it remains today, despite a well-organized lobbying campaign by the American Psychiatric Association. In the files of the FDA in Rockville, Maryland, are at least 1000 letters from survivors testifying to the damage that was done to them by ECT. In 1984 some of these survivors organized as the Committee for Truth in Psychiatry to lobby for informed consent as a way of protecting future patients from permanent brain damage. Their statements challenge the assumption that survivors “recover” from ECT:
Most of my life from 1975-1987 is a fog. I remember some things when reminded by friends, but other reminders remain a mystery. My best friend since high school in the 1960s died recently and with her went a big part of my life because she knew all about me and used to help me out with the parts I couldn’t remember. (Frend, 1990)
I haven’t had a shock for over ten years now but I still feel
sad that I can’t remember most of my late childhood or any of my high school days. I can’t even remember my first intimate experience. What I know of my life is second hand. My family has told me bits and pieces and I have my high school yearbooks. But my family generally remembers the “bad” times, usually how I screwed up the family life and the faces in the yearbook are all total strangers. (Calvert, 1990)
As a result of these “treatments” the years 1966-1969 are almost a total blank in my mind. In addition, the five years preceding 1966 are severely fragmented and blurred. My entire college education
has been wiped out. I have no recollection of ever being at the University of Hartford. I know that I graduated from the institution because of a diploma I have which bears my name, but I do
not remember receiving it. It has been ten years since I received electroshock and my memory is still as blank as it was the day I left the hospital. There is nothing temporary about the nature of memory loss due to electroshock. It is permanent, devastating, and irreparable. (Patel, 1978)
ECT AS TRAUMATIC BRAIN INJURY
Both psychiatrist Peter Breggin (Breggin,, 1991, p. 196) and
ECT survivor Marilyn Rice, founder of the Committee for Truth in Psychiatry, have pointed out that minor head injury as a result of trauma often occurs without loss of consciousness, seizures, disorientation, or confusion, and is thus much less traumatic than a series of electroshocks. A better analogy would be that each individual shock is the equivalent of one moderate to severe head injury. The typical ECT patient, then, receives at least ten head injuries in rapid succession.
Proponents as well as opponents of ECT have long recognized it as a form of head injury.
As a neurologist and electroencephalographer, I have seen many patients after ECT, and I have no doubt that ECT produces effects identical to those of a head injury. After multiple sessions of ECT, a patient has symptoms identical 😮 those of a retired, punch-drunk boxer.. .After a few sessions of ECT, the symptoms are those of moderate cerebral contusion, and further enthusiastic use of ECT may result in the patient functioning at a subhuman level. Electroconvulsive therapy in effect may be defined as a controlled type of brain damage produced by electrical means. (Sament, 1983)
What shock does is throw a blanket over people’s problems. It would be no different than if you were troubled about something in your life and you got into a car accident and had a concussion. For a while you wouldn’t worry about what was bothering you because you would be so disoriented. That’s exactly what shock therapy does. But in a few weeks when the shock wears off, your problems come back. (Coleman, quoted in Bielski, 1990)
We don’t have a treatment. What we do is inflict a closed-head injury on people in spiritual crisis.. .closed-head injury! And we have a vast literature on closed-head injury. My colleagues are not eager to have literature on electroshock closed-head injury; but we have it in every other field. And we have considerably more than people are allowing for here today. It is electrical closed-head injury. (Breggin, 1990)
There has never been any debate about the immediate effects of a shock: it produces an acute organic brain syndrome which becomes more pronounced as shocks continue. Harold Sackeim, the ECT establishment’s premier publicist (anyone who has occasion to write about or refer to ECT, from Ann Landers to a medical columnist, is referred by the APA to Dr. Sackeim) states succinctly:
The ECT-induced seizure, like spontaneous generalized seizures in epileptics and most acute brain injury and head trauma, results in
a variable period of disorientation. Patients may not know their names, their ages, etc. When the disorientation is prolonged, it is generally referred to as an organic brain syndrome. (Sackeim, 1986)
This is so expected and routine on ECT wards that hospital staff become inured to making chart notations like “Marked organicity” or “Pt. extremely organic” without thinking anything of it. A nurse who has worked for years on an ECT ward says:
Some people seem to undergo drastic personality changes.
They come in the hospital as organized, thoughtful people who
have a good sense of what their problems are. Weeks later I see
them wandering around the halls, disorganized and dependent. They
become so scrambled they can’t even have a conversation. Then
they leave the hospital in worse shape than they came in.
(Anonymous psychiatric nurse, quoted in Bielski, 1990)
A standard information sheet for ECT patients calls the period
of most acute organic brain syndrome a “convalescence period” and warns patients not to drive, work, or drink for three weeks (New York Hospital-Cornell Medical Center, undated). Coincidentally, four weeks is the maximum time period for which proponents of ECT can claim alleviation of psychiatric symptoms (Opton, 1985), substantiating the statement made by Breggin (1991, pp. 198-99) and throughout the ECT literature that the organic brain syndrome and the “therapeutic” effect are the same phenomenon.
The information sheet states as well that after each shock the patient “may experience transitory confusion similar to that seen in patients emerging from any type of brief anesthesia.” This misleading characterization is belied by two doctors’ published observations of patients after ECT.(Lowenbach and Stainbrook, 1942). The article begins by stating “A generalized convulsion leaves a human being in a state where all that is called the personality has been extinguished.”
A compliance with simple commands like opening and closing the eyes and the appearance of speech usually coincide. The first utterances are usually incomprehensible, but soon it is possible to recognize first the words and then sentences, although they may have to be guessed at rather than directly understood…
If at this time patients were given a written order to write their name, they would not ordinarily follow the command…if then the request was repeated orally, the patient would take the pencil and write his name. At first the patient produces only scribbling and has to be constantly urged to continue. He may even drop back into sleep. But soon the initial of the first name may be clearly discernible…Usually 20 to 30 minutes after a full-fledged convulsion the writing of the name was again normal…
The return of the talking function goes hand in hand with the writing ability and follows similar lines. The muttered and seemingly senseless words and maybe the silent tongue movements are the equivalent of scribbling.. .But as time goes on it “is possible to establish question and answer sessions.. .From now on, the perplexity of the patient arising from his inability to grasp the situation pervades his statements.
He may ask if this is a jail. ..and if he has committed a crime.. The efforts of the patient to re-establish their orientation almost always follow the same line: “Where am I.”… know you” (pointing to the nurse)… to the question “What is my name?” “I do not know”…
The patient’s behavior when asked to perform a task such as to get up from the bed where he lies demonstrates another aspect of the process of recovery.. .he does not act according to voiced intentions. Sometimes urgent repetition of the command would set off the proper movements; in other cases beckoning had to be initiated by pulling the patient from the sitting position or removing one leg from the bed.. .But the patient then frequently stopped doing things and the next series of actions, putting on his shoes, tying the laces, leaving the room, had each time to be expressly commanded, pointed out, or the situation had to be actively forced. This behavior indicates lack of initiative…
It is possible, indeed likely, that a patient and her family could read the entire information sheet mentioned earlier and have
no idea that ECT involves convulsions. The words “convulsion” or “seizure” appear not at all. The sheet states that the patient will have “generalized muscular contractions of a convulsive nature”.
Recently Dr. Max Fink, the country’s best-known shock doctor, offered to let the media interview a patient right after a course of electroshock… for a fee of $40,000 (Breggin, 1991, p. 188).
It is common for persons who have received ECT to report being “in a fog”, without any of the judgment, affect, or initiative of their former selves, for a period of up to one year post-ECT. Afterwards they may have little or no memory of what happened during this period.
I experienced the explosion in my brain. When I woke up from the blessed unconsciousness I did not know who I was, where I was, nor why. I could not process language. I pretended everything because I was afraid. I did not know what a husband was. I did not know anything. My mind was a vacuum. (Faeder, 1986)
I just completed a series of 11 treatments and am in worse shape than when I started. After about 8 treatments I thought I had improved from my depression.. . I continued and my effects worsened. I began experiencing dizziness and my memory loss increased. Now that I had the 11th my memory and thinking abilities are so bad I wake up in the morning empty-headed. I don’t remember many past events in
my life or doing things with the various people in my family. It is hard to think and I don’t enjoy things. I can’t think about anything else. I can’t understand why everyone told me this procedure was so safe. I want my brain back. (Johnson, 1990)
LONG-TERM EFFECTS OF ECT ON COGNITIVE AND SOCIAL FUNCTIONING
The loss of one’s life history–that is, loss of part of the self–is in itself a devastating handicap; but added to this unique quality of ECT head injury are the cognitive deficits associated with other types of traumatic brain injury.
There is not now nearly enough research on the nature of ECT cognitive deficits, or of the impact of these deficits on social roles, employment, self-esteem, identity, and long-term quality of life for survivors. There is only one study which examines how ECT (negatively) affects family dynamics (Warren, 1988). Warren found that ECT survivors “commonly” forgot the very existence of their husbands and children! For example, one woman who had forgotten she had five children was furious when she found out her husband had lied to her, telling her the children belonged to a neighbor. Husbands frequently used their wives’ amnesia as an opportunity to reconstruct marital and family history, to the husbands’ advantage. Clearly, Warren’s study suggests there is much to explore in this area.
There is currently no research which addresses the question of how best to meet the rehabilitative and vocational needs of ECT survivors. One such study, proposed but not implemented in the 1960s, is described in Morgan (1991, pp. 14-19). Its hopeful conclusion that “with enough data, it may some day be possible to deal therapeutically with ECT-damaged patients, perhaps with some radically new approach to psychotherapy, or direct re-education or modification of behavior” has, a generation later, not come to pass. Funding sources such as the National Institute on Disability and Rehabilitation Research must be encouraged to sponsor such research.
The research which exists shows that sensitive psychometric testing always reveals cognitive deficits in ECT survivors. Even given the differences in available testing methods, the nature of these deficits has remained stable over 50 years. Scherer (1951) gave tests of memory function, abstraction, and concept formation to a group of survivors who had received an average of 20 shocks (using brief-pulse or square wave current, the type that is standard today) and to a control group of patients who did not receive ECT. He found that “lack of improvement as between pre- and post-shock results may indicate that shock has injured the patient to the extent that he is unable to achieve his premorbid intellectual potentialities, even though he can shake off the intellectually debilitating effects of the psychosis.” He concluded that “harmful organic results in areas of intellectual function.. .may nullify the partial benefits of the treatment.”
Templer, Ruff and Armstrong (1973) found that performance on
the Bender Gestalt test was significantly worse for persons who had received ECT than for carefully matched controls who had not.
Freeman, Weeks and Kendell (1980) matched a group of 26 ECT survivors with controls on a battery of 19 cognitive tests; all of the survivors were found to be significantly cognitively impaired. The researchers attempted to attribute the impairment to drugs or mental illness, but could not do so. They concluded that “our results are compatible” with the statement that ECT causes permanent mental impairment. The interviews with survivors revealed almost identical deficits:
Forgetful of names, gets easily sidetracked and forgets what he was going to do.
Forgets where she puts things, can’t remember names.
Memory poor and gets confused, to such an extent that he loses jobs.
Difficult to remember messages. Gets mixed up when people tell her things.
Said she was known in her bridge club as the “computer because of her good memory. Now has to write things down, and misplaces keys and jewelry.
Can’t retain things, has to make lists.
Templer and Veleber (1982) found permanent irreversible cognitive deficits in ECT survivors given neuropsychological testing. Taylor, Kuhlengel and Dean (1985) found significant cognitive impairment after only five shocks. “Since cognitive impairment is such an important side effect of bilateral ECT, it seems important to define as carefully as possible which aspects of the treatment are responsible for the deficit,” they concluded. Although they did not prove their hypothesis about the role of an elevation in blood pressure, “It is important to continue to search for the cause or causes of this impairment. If this important side effect could be eliminated or even modified, it could only be a service to patients…” But there is no separating the so-called therapeutic effects from the disabling cognitive effects.
A study-in-progress designed and implemented by members of the National Head Injury Foundation (SUNY Stony Brook, unpublished thesis project) with the same size sample as the Freeman et al study uses a simple self-scoring questionnaire to evaluate cognitive deficits in both the acute and chronic organic brain syndrome stages. The study also elicits information about coping strategies (self-rehabilitation) and about the amount of time it takes to accommodate to deficits.
All respondents in the study indicated they suffered from common symptoms of head injury both during the year after ECT and many,
many years afterwards. The average number of years since ECT for
the respondents was twenty-three. 80% had never heard of cognitive rehabilitation.
Only one-fourth felt they had been able to adjust to or compensate for their deficits by their own efforts. Most indicated they were still struggling with this process. Of those few who felt they had adjusted or compensated, the average number of years to reach this stage was fifteen. When those who had adjusted or compensated were asked how they did it, the most frequently cited answer was “hard work on my own.”
Respondents were asked if they would have liked acknowledgment of or help with their cognitive problems during the year after ECT, and whether they would still like help regardless of how long ago they had been shocked. All but one of the respondents said they would have wanted help in the post-ECT year, and 90% said they still wanted help.
In the last several years with the increased availability of neuropsychological testing, increasing numbers of ECT survivors have taken the initiative where researchers have failed, and have had testing done. In every known case, testing has shown unmistakable brain dysfunction.
Patients’ accounts of cognitive deficits from diverse sources
and across continents remain constant from the 1940s to the 1990s. If these people are imagining their deficits, as some shock doctors like to claim, it is unthinkable that patients over five decades should all imagine exactly the same deficits. One cannot read these accounts without calling to mind the description of minor head injury in the National Head Injury Foundation brochure “The Unseen Injury: Minor Head Trauma”:
Memory problems are common.. .You may be more forgetful of names, where you put things, appointments, etc. It may be harder to learn new information or routines. Your attention may be shorter, you may be easily distracted, or forget things or lose your place when you have to shift back and forth between two things. You may find it harder to concentrate for long periods of time, and become mentally confused, e.g. when reading. You may find it harder to find the right word or express exactly what you are thinking. You may think and respond more slowly, and it may take more effort to do the things you used to do automatically. You may not have the same insights or spontaneous ideas as you did before.. .You may find it more difficult to make plans, get organized, and set and carry out realistic goals…
I have trouble remembering what I did earlier this week. When I talk, my mind wanders. Sometimes I can’t remember the right word to say, or a co-worker’s name, or I forget what I wanted to say. I have been to movies that I can’t remember going to. (Frend, 1990)
I was an organized, methodical person. I knew where everything was. I’m different now. I often can’t find things. I’ve become very scattered and forgetful. (Bennett, quoted in Bielski, 1990)
These words eerily echo those of the ECT survivors described by Dr. M.B. Brody in 1944:
(18 months after 4 shocks) One day three things were missing, the poker, the paper, and something else I cannot remember. I found the poker in the dustbin; I must have put it there without remembering. We never found the paper and I am always very careful of the paper. I want to go and do things and find I have already done it. I have to think about what I am doing so that I know I have done it.. .it is uncanny when you do things and find you cannot remember them.
(One year after 7 shocks) The following are some of the things I forget: the names of people and places. When the title of a book is mentioned I may have a vague idea that I have read it, but cannot remember what it is about. The same applies to films. My family tells me the outlines and I am able to remember other things at the same time.
I forget to post letters and to buy small things, such as mending and toothpaste. I put things away in such safe places that when they are needed it takes hours to find them. It did seem that after the electric treatment there was only the present, and the past had to be recalled a little at a time.
All of Brody’s survivors had incidents of not recognizing familiar people:
(One year after 14 shocks) There are many faces I see that I
know I should know quite a lot about, but only in a few cases can I recall incidents connected with them. I find I can adjust myself to these circumstances by being very careful in making strong denials, as fresh personal incidents constantly crop up.
38 years later, a woman who had 7 shocks wrote:
I was shopping in a department store when a woman came over to me, said hello and asked me how I was. I had no idea who she was or how she knew me.. .1 couldn’t help feeling embarrassed and helpless, as if I were no longer in control of my faculties. This experience was to be the first of many encounters in which I would be unable to recall people’s names and the context in which I knew them. (Heim, 1986)
The deficits in storing and retrieving new information associated with ECT may severely and permanently impair learning ability. And, just as the NHIF brochure states, “Often these problems are not encountered until a person returns to the demands or work, school, or home.” Attempting to go or return to school especially overwhelms and commonly defeats ECT survivors:
When I returned to classes I found I couldn’t remember material I had learned earlier, and that I was totally unable to concentrate… My only choice was to withdraw from university. If there was one area in which I had always excelled, it was in school. I now felt like a complete failure and that I’d never be able to return to university. (Heim, 1986)
Some of the things I tried to study was like trying to read a book written in Russian—no matter how hard I tried I could not get the sense of what the words and diagrams meant. I forced myself to concentrate but it continued to appear gibberish. (Calvert, 1990)
In addition to destruction of entire blocks of pre-ECT memories I have continued to have considerable difficulty in memory with regard to academic pursuits. To date, of embarrassing necessity I have been forced to tape-record all education materials that require memorization. This has included basic classes in accounting and word-processing materials. I was forced to retake accounting in 1983. Now, I am again forced to retake a basic one-semester course in computerized word processing. Currently, I am finding it extremely embarrassing and hurtful when fellow classmates (however innocently) refer to my struggles in grasping my study materials, thusly: “You are an AIR-BRAIN!” How can I explain that my struggles are due to ECT? (Winter, 1988)
I started school full time and found I did much better than
I could imagine remembering information on field placement and classes—but I couldn’t understand what I read or put ideas together—analyze, draw conclusions, make comparisons. It was a shock. I was at last taking courses on theory.. .and ideas just didn’t remain with me. I finally accepted the fact that it was just going to be too much torture for me to continue so I quit my field placement, two courses, and attended only one discussion course until the end of the semester when I withdrew. (Maccabee, 1989)
It is often the case that the ECT survivor is disabled from
her or his previous work. Whether or not a survivor returns to work depends on the type of work previously done and the demands it makes on intellectual functioning. The statistics on employment of ECT survivors would seem to be just as dismal as statistics on employment of head-injured persons in general. In the SUNY survey, two-thirds of the respondents were unemployed. Most indicated that they had been employed prior to ECT and unemployed since. One elaborated:
At the age of 23 my life was changed because after ECT I experienced disabling difficulty understanding, recalling, organizing and applying new information and also problems with distractibility and concentration. I had ECT while I was teaching and because my level of functioning had changed so dramatically I quit my job. My abilities have never returned to pre-ECT quality. Pre-ECT I’d been able to function in a totally individualized sixth-grade classroom where I designed and wrote much of the curriculum myself. Due to the problems I had after ECT I never returned to teaching. (Maccabee, 1990)
A nurse writes of a friend at one year post-ECT:
A friend of mine had 12 ECT treatments in September-October 1989. As a result, he has retrograde and anterograde amnesia and is unable to perform his work as a master plumber, cannot remember his childhood and cannot remember how to get around the city where he has lived all his life. You can imagine his anger and frustration.
The psychiatrists have been insisting that his problem is not ECT-related but is a side effect of his depression. I have yet
to see a severely depressed person fight so hard to regain their ability to think clearly and be able to go back to work again. (Gordon, 1990)
She has stated clearly the impossible situation of ECT survivors. There can be no help for them until there is recognition of the traumatic brain injury they have sustained and its disabling effects.
ECT survivors have the same needs for understanding, support,
and rehabilitation as other head injury survivors. If anything, it could be said that their needs may be greater, since the massive retrograde amnesia unique to ECT can precipitate an even greater crisis of identity than occurs with other head injuries.
Neuropsychologist Thomas Kay, in his paper Minor Head Injury: An Introduction for Professionals, identifies four necessary elements in successful treatment of head injury: identification of the problem, family/social support, neuropsychological rehabilitation, and accommodation; Identification of the problem, he says, is the most crucial element since it must precede the others. Tragically at this time it is the rule rather than the exception that for ECT survivors none of these elements come into play.
This is not to say that ECT survivors never successfully build a new self and a new life. Many courageous and hardworking survivors have—but they have until now always had to do it alone, without any help, and it has taken a sizable chunk of their lifetimes to do it.
As time goes on, I have made a great effort to regain the maximum use of my brain by forcing it to concentrate and to try to remember what I hear and read. It has been a struggle… I feel like I have been able to maximize the undamaged parts of my brain.. .I still mourn the loss of a life that I didn’t have. (Calvert, 1990)
Survivors are beginning to share their hard-won strategies with other survivors, professionals who would help them would do well to listen to those whose daily business, even decades after ECT, is surviving.
I tried a course in general psychology, which I’d had As on in college. I quickly discovered that I couldn’t remember anything if I just read the text.. .even if I read it several times (like four or five). So I programmed my materials by writing out questions for each sentence and writing the answers on the back of the cards. I then quizzed myself until the material was memorized. I have all the cards from two courses. What a stack… I memorized the book, practically… and worked five to six hours a day on weekends and three or four during the work week… It was quite different from when I was in college. Then, I read things and remembered them. (Maccabee, 1989)
She also describes her own cognitive retraining exercise:
The main exercise consists primarily of counting from 1-10 while visualizing, as steadily as possible, some image (object, person, etc.) I thought of this exercise because I wanted to see if I could practice using the right and left sides of my brain. Since I began this I think I read that that isn’t what I was doing. But, it seemed to work. When I first started the exercise I could hardly hold an image in mind, much less count at the same time. But I have become quite good at it and I relate it to an improved ability to deal with distractions and interruptions.
Similar exercises, in fact, are practiced in formal cognitive rehabilitation programs.
Often self-rehabilitation is a desperate, trial-and-error process that takes many lonely, frustrating years. A woman describes how she taught herself to read again after ECT, at age 50:
I could process language only with difficulty. I knew the words, how they sounded, but I had no comprehension.
I did not literally start at “scratch”, as a preschooler, because I had some memory, some understanding of letters and sounds—words—but I had no comprehension.
I used TV for newscasts, the same item in the newspaper, and tried to match these together to make sense. Only one item, one line. Try to write it in a sentence. Over and over, again and again.
After about six months (this was daily for hours), I tried Reader’s Digest. It took me a very long time to conquer this–no pictures, new concepts, no voice telling me the news item. Extremely frustrating, hard, hard, hard. Then magazine articles. I did it! I went on to “For Whom the Bell Tolls” because I vaguely remembered I had read it in college and had seen the movie. But it had many difficult words and my vocabulary was not yet at the college level, so I probably spent two years on it. It was 1975 when I felt I had reached the college level in reading.(I started in 1970.) (Faeder, 1986)
One survivor for whom the slow process of rehabilitation has taken two decades expresses the hope of many others that the process might be made easier for those being shocked in the ’90s:
I might never have thought that rehabilitation was something that ECT patients could benefit from until I was examined in 1987, at my request, at a local psychogeriatric center because I worried that perhaps I had Alzheimer’s disease because my intellectual functioning still caused me problems. During the psychological testing, which extended over a period of two months due to scheduling problems, I observed that my concentration improved and I functioned better at work. I reasoned that the “time-encapsulated” efforts to concentrate and focus my attention carried over. The tests were not meant to be rehabilitative, but they somewhat served this purpose—and convinced me that sequential retraining or practicing of cognitive skills could be beneficial to ECT patients. Of course, this was almost 20 years after ECT…
I hold a responsible, though poorly paying, job as an administrative assistant for a professional organization—performing at tasks that I never thought I would be able to do again. I might have been able to do them earlier if I’d had rehabilitation training. At this time I am concerned about the plight of ECT patients who are still struggling. While these ECT “complainers” are at risk of becoming increasingly depressed—and perhaps suicidal—because
of their disabilities, professionals continue to argue about whether or not ECT causes brain damage using insufficient and in some cases outdated data.
I wish that some brain trauma research and rehabilitation
center would accept a few ECT patients and at least see if practicing or “reprogramming” of cognitive skills could result
in improved performance. (Maccabee, 1990)
In 1990, three ECT survivors were treated in the cognitive rehabilitation program of a New York City hospital. Slowly, attitudes and preconceived ideas are changing.
ECT IN THE ’90s
ECT has gone in and out of fashion during its 53-year history; now on the wane, now making a comeback. Whatever happens in this decade (ironically designated by President Bush the Decade of the Brain), ECT survivors cannot afford to wait until a favorable political climate allows them the help they need. They need it now.
There are some hopeful signs. The 1980s saw an unprecedented boom in ECT (medical malpractice) lawsuits citing brain damage and memory loss, to the point where settlements are steadily increasing for those with the stamina and resources to pursue legal redress. The ECT machine remains in Class III at the FDA. ECT survivors are joining head injury support groups and organizations in record numbers.
State legislatures are toughening ECT laws, and city councils
are taking courageous stands against ECT. On February 21, 1991, after well-publicized hearings at which survivors and professionals testified, the Board of supervisors of the City of San Francisco adopted a resolution opposing the use of ECT. A bill pending in the New York State Assembly (AB6455) would require the state to keep statistics on how much ECT is done, but its accompanying strongly worded memorandum opens the door for stricter measures in the future. In July 1991 the Madison, Wisconsin city council proposed a resolution to recommend a ban on the use of ECT. (Shock was banned in Berkeley, California in 1982 until the local psychiatrists’ organization overturned the ban on a technicality.) The council’s Public Health Committee unanimously agreed that accurate information about the effects of ECT on memory must be presented to patients, and they are writing a resolution to contain full and accurate information. And in August 1991 ECT survivors testified, and a manuscript containing accounts of memory loss by 100 survivors was presented, at hearings in Austin, Texas, before the Texas Department of Mental Health. Subsequently the Department’s regulations were revised to contain a stronger warning about permanent mental dysfunction.
It is difficult, even in so many pages, to paint a full picture of the suffering of ECT survivors and the devastation experienced not only by the survivors but by their families and friends. And so the last words, chosen because they echo the words of so many others over the years, belong to a former nurse estranged from her husband and living on Social Security Disability, fighting in the legal system for redress and working with an advocacy group.
What they took from me was my “self”. When they can put a dollar value on theft of self and theft of a mother I would like
to know what the figure is. Had they just killed me instantly the kids would at least have had the memory of their mother as she
had been most of their lives. I feel it has been more cruel, to
my children as well as myself, to allow what they have left to breathe, walk, and talk.. .now the memory my kids will have is of this “someone else” who looks (but not really) like their mother. I haven’t been able to live with this “someone else” and the life I’ve lived for the past two years has not been a life by any stretch of the imagination. It has been a hell in the truest sense of the word.
I want my words said, even if they fall on deaf ears. It’s not likely, but perhaps when they are said, someone may hear them and at least try to prevent this from happening again. (Cody, 1985)
Avery, D. and Winokur, G. (1976). Mortality in depressed patients treated with electroconvulsive therapy and antidepressants. Archives of General Psychiatry, 33, 1029-1037.
Bennett, Fancher. Quoted in Bielski (1990).
Bielski, Vince (1990). Electroshock’s Quiet Comeback. The San Francisco Bay Guardian, April 18, 1990.
Breggin, Peter (1985). Neuropathology and Cognitive Dysfunction from ECT. Paper with accompanying bibliography presented at the National Institutes of Health Consensus Development Conference on ECT, Bethesda, MD., June 10.
Breggin, Peter (1990). Testimony before the Board of Supervisors of the City of San Francisco, November 27.
Breggin, Peter (1991). Toxic Psychiatry. New York: St. Martins Press.
Brody, M.B. (1944). Prolonged memory deficits following electrotherapy. Journal of Mental Science, 90 (July), 777-779.
“The world is charged with the grandeur of God.” Gerard Manley Hopkins
As an older adult with severe double vision, no depth perception, and “convergence insufficiency,” I saw a special Vision Therapy trained optometrist for about a year. The experience I write about below happened just before I ended treatment.
Early one morning, well before day lightened behind the fence of trees to the east, I went to move my snowed-in car to make way for the plows. As the automatic door opened, letting me out into the cold, I could see that falling snow against the street lamps made sparkles and sparks. I headed towards the car, thinking of nothing but the cold. Then, brain clicked, like the flip of a switch, and something in my vision changed. Instead of seeing the snow fall in a sheet, curtain-like, in front of me as I always had before, I now walked inside it, as if in a snow globe, separate flakes plummeting around me, each on a different plane, riding a separate moving point in space as it fell.
Startled, I blinked my eyes, thinking the curtain would close in again. Nothing. I looked down at a snow-covered bush next to me on the sidewalk. The ends of its bare twigs were lightly mounded, contrasts heightened, the whiteness of the snow and twigs gently vibrating with laser-etched clarity and precision of detail. I can only describe what came over me then as a feeling of connectedness, of affection for the universe. I smiled as I stood there, realizing that I was seeing depth, I was seeing space, and the spaces between things, for the first time. At least for the first time that I could remember, for the first time since who knows how long. That was all, and it was everything.
I had a dream once that I never forgot, a dream in which I actually ate chocolate. I tasted it and I swallowed it, and in which I stroked a cat and was able even in the dream to feel the soft silkiness of its warm fur. Both of these acts, though in reality mental, not physical, took enormous effort, even courage. I felt, while sleeping, that if I were to break the spell of whatever made these experiences “forbidden,” neurologically speaking, something would happen. It was not clear to me at the time of this dream whether it would be catastrophic or miraculous, and as a result, while I managed to push through those barriers, even in sleep, my apprehension, indeed my terror, was immense.
This experience in the snow felt very similar. Space, I saw with sudden breath-taking enlightenment, is not negative. The “negative space” artists speak so passionately of doesn’t exist. Space is a real, solid kind of stuff that gives definition and substance to matter. In fact, if space, the medium that surrounds everything, changed the ordinary boxwood in the snow before me into a burning bush of miracles, what couldn’t it do?
Now, I must admit that contemplation of snow-covered shrubbery and buried cars and yellow street lamps, among other things, in sub-freezing temperatures has never been my favorite way to spend an early morning, yet it was a long time before I went indoors. When finally, rubbing my hands to warm them, I made my way to my computer to jot down some notes, I put my fingers out and, was immediately taken by the fact that my hands went outwards into space! The very sight of the keyboard elevation made my heart ache. What could be lovelier than the fact that keys themselves protruded above the keyboard? The words were palpable and delicious, not just with possibility but with reality: outwards,protrude, elevate, above. My typing fingers — they hovered in a tangible space over the keys, and I could see that there was a space between my fingers and the keyboard. Indeed it was a small miracle the way space gave form to those small squares, indented just slightly to fit the pads of my fingertips! All this was too much for me and alone in my room I found myself laughing aloud. Suddenly, the entire world was friendly.
I went around my apartment. Look at this! Look at that! I couldn’t pry my eyes from things. Dish towels announced themselves, as their threads stood up, cupped and rounded by space, each one loved into being by the fact of the empty air that surrounded it. Folds struck me as the most beautiful objects I had ever seen. Folds in terrycloth fabric differed utterly from folds in other fabrics. Even paper bent around an angle, embracing a fold, allowed sculpted space on each side to nearly bring tears to my eyes. Who would have thought that material, bent, could become a form of such magnificence?
And on it went. Doorknobs yearned, reaching out from doors into space. Bookshelves provided welcoming recesses, intimate and implicit with corners, as if saying, Come in, we will protect you. There were delicious concavities in every spoon! My circuit of the room over and over would have been ridiculous, had not everything been so lovely, and so thoroughly devastating.
Snow-covered bushes computer keyboard, a hand extended into the air — I understood in an instant that it was space, this lovely positive space, that sculpts the entire world, just as a sculptor carves stone. I knew then that it is only because most people get so used to depth perception all their lives that they lose all ability to perceive the beauty of space, to see how much space quite literally embodies.
Later the vision faded and as my eyes relaxed, my ability to see “3-D” was lost. But I still remember, towards the end of the experience, how as I looked into an empty wastebasket I was bowled over to understand that it had a rounded interior. The sheer “interiority” of it, the fact that the space inside it implied roundedness so matter-of-factly that I did not have to feel it to know this– why hadn’t I understood any of this before? It struck me as a terrible failure and yet the most transcendent discovery of my life. I knew then that if the world was charged with the grandeur of anything, it must be a positive, optimistic Shaper of things and that this Shaper is the world’s, the universe’s, Creator, which we instead call, as if it were nothing, “empty space.”
Could it be possible that most people will never have an opportunity to experience such overwhelming love for spoons and doorknobs and computer keys or even for hands above the paper or every possible human nose that sticks out into space? If so, it might even be the reason we humans have let ourselves destroy our environment, the most precious matter in the Creative Space around us.
Because we did not understand how space is our Creator, we have destroyed it and ourselves in the process. How could we have done otherwise? We did not know because we could not see. And if we could not see, how could we know the truth: that Space is Love that creates the world and makes us and all matter beautiful.
Aside from the fact that it is really stupid and cruel to say this to a student taking your course on creativity, and I was stupid enough to listen to him without objecting…Aside from all that, when Robert Fritz says artists can’t use art to work out their problems, I say, Balderdash! SAYS WHO? SAYS WHO?!!!
Can you imagine what the world would be like without artists who did NOT work out their problems in and through their art? A world without the likes of, and I am just selecting a few very famous examples from all over the art world:
Edvard Munck’s numerous depictions…
Just in case you doubt that he was rendering his emotional turmoil in pastel and paint, he wrote these sentences on the frame of one of the four known original versions of what the world now knows as
I was walking along the road with two friends – the sun was setting – suddenly the sky turned blood red – I paused, feeling exhausted, and leaned on the fence – there was blood and tongues of fire above the blue-black fjord and the city – my friends walked on, and I stood there trembling with anxiety – and I sensed an infinite scream passing through nature.
And where would the world of poetry be without Sylvia Plath. Surely it would be a milder and less rich place without her magnificent and moving poem, “Daddy”, which I will quote only in part below:
“You do not do, you do not do
Any more, black shoe
In which I have lived like a foot
For thirty years, poor and white,
Barely daring to breathe or Achoo.
Daddy, I have had to kill you.
You died before I had time——
Marble-heavy, a bag full of God,
Ghastly statue with one gray toe
Big as a Frisco seal
And a head in the freakish Atlantic
Where it pours bean green over blue
In the waters off beautiful Nauset.
I used to pray to recover you.
The poem continues for several more stanzas which are well worth reading before ending with the incredible punch of:
“…So daddy, I’m finally through.
The black telephone’s off at the root,
The voices just can’t worm through.
If I’ve killed one man, I’ve killed two——
The vampire who said he was you
And drank my blood for a year,
Seven years, if you want to know.
Daddy, you can lie back now.
There’s a stake in your fat black heart
And the villagers never liked you.
They are dancing and stamping on you.
They always knew it was you.
Daddy, daddy, you bastard, I’m through.“
A contemporary poet who has for many years mined her life and traumas for art, is undeniably Sharon Olds. But one poet who made art out of exquisite spiritual agonies was the British Jesuit convert,
Gerard Manley Hopkins in the mid-1800s, who wrote what are now called The Terrible Sonnets, terrible because they portray with astonishing depth the suffering and spiritual anguish he experienced as a parish priest going through the dark night of the soul. I do not know of any poet, then or now, who has done it better.
This is one of my all-time favorites of Hopkins. But you really need to read it aloud…
Not, I’ll not, carrion comfort, Despair, not feast on thee;
Not untwist — slack they may be — these last strands of man
In me ór, most weary, cry I can no more. I can;
Can something, hope, wish day come, not choose not to be.
But ah, but O thou terrible, why wouldst thou rude on me
Thy wring-world right foot rock? lay a lionlimb against me? scan
With darksome devouring eyes my bruisèd bones? and fan,
O in turns of tempest, me heaped there; me frantic to avoid thee and flee?
Why? That my chaff might fly; my grain lie, sheer and clear.
Nay in all that toil, that coil, since (seems) I kissed the rod,
Hand rather, my heart lo! lapped strength, stole joy, would laugh, chéer.
Me? or me that fought him? O which one? is it each one? That night, that year
Of now done darkness I wretch lay wrestling with (my God!) my God.
Speaking of artists, does anyone else perhaps believe that Francisco Goya might have been working out something in this painting?
Francisco Goya Saturn Devouring Son
But as Robert Fritz said to me in class, and I stupidly took to heart, “ARTISTS CAN’T USE ART TO WORK OUT PROBLEMS”…
Geee, they can’t? How dumb of me to think they can and do it, all the time.
Remember Franz Kafka? Why do I think he too might have been dealing with his authoritarian father in such books as THE TRIAL, THE CASTLE, THE PENAL COLONY or a story like “The Hunger Artist”…No, that is impossible, right? After all, artists cannot and do not do such things, not real artists…Not according to Robert Fritz, who is the arbiter of all things art!
Songwriters are notorious for displaying their hearts on their sleeves, as most of us know. But VIc Chesnutt, who later committed suicide, did this in spades, with his song, “Coward.” This song is far too raw and painful to me to place it here as a sound file. But I will give you the lyrics and tell you to look for a version of Vic singing it, as no one can do it better.
The courage of the coward Is greater than all others A scaredy-cat’ll scratch ‘im If you back ‘im in a corner But I ,I ,I, I am a coward I, I, I am a coward Courage born of despair and impotence Submissive dogs can Lash out in fear and be Very, very dangerous But I ,I ,I, I am a coward I, I, I am a coward
Anyhow, I think I have made a case for stating that art — which can be used for a great many purposes, in fact can be used in whatever fashion and for whatever use you want to employ it, because truly there are no rules — most certainly one can work out one’s problems in and through using art. What better way to do so in fact? Better than taking a load of guns and shooting up the nearest _________! (fill in the blank with the most recent mass shooting locale.)
I welcome my readers to send me examples of artists who expressed themselves or used their problems to make art. I will add them to the list, especially if you provide a link to an example of their work.
Much love to all,
Pamela Spiro Wagner
Oh, I plum forgot! Here is my own example of using art to deal with problems:
Please note that i am reposting this frorm a week ago as it got accidentally deleted, but i cannot repost the comments. Anyone who wishes to recomment is welcome to.
It all started when i bodily “escorted” the nurse,KJ out of my bathroom, where I had situated my mattress, and had her leave my lunch on the table outside. I had been vocalizing loudly and softly virtually only the three words, “oswall wistofi matootam” for days uncontrollably, and over the past hour i had screamed at the top of my lungs from my room, which the nurse had to have heard but made no response. When she simply left my lunch at the table, i felt utterly ignored and abandoned, and in a rage of certainty that she was plotting against me, picked up the cup of coffee and threw it straight at her. With unusual accuracy, it found its target in her center. My next lob hit only the wall.
In certainty of repercussion, i slammed my door and waited. Soon the usual code was called, but instead of burly men bursting in the door, i heard them packing up the sitting area for quite some time, and it knew it took them some several minutes to prepare an injection of my medications. But my terror only increased, so i grabbed a chair to defend my self. Finally they opened the door. KJ in an oh so nice voice said, “pam, i have medication for you.” And they quickly grabbed the chair and four men upended me and laid me on the floor near the bed frame, which was covered in my artwork and books. It took quite some time for the staff to methodically pack up all items they feared, apparently, might go flying at them afterwards ( though if proper protocol had been followed from tHe first, nothing would have).
This proper protocol, by the way, had been developed by another nurse and i after much discussion of my detailed advanced directive and my intense horror of locked seclusion and mechanical restraints, both of which i have experienced in abundance and usually for discipline or convenience, almost never for any truly emergent reason. That said, i believe the first nurse, KJ had lost her temper with me, and decided not to follow this protocol on the unit because she wanted to punish me, as will be demonstrated by what followed.
Having brought the two IM medications with her, which the protocol for agitation we had worked out calls for, she eventually called for the men to deposit me on the bed frame so she could inject them, one in each leg. She did so. Then, instead of having them keep me in a protective hold for as long as i needed to calm myself and potentially fall asleep, which usually took little more than 10-15 minutes, she said, she was having everyone leave and locking me alone in my emptied room. I screamed aloud at this. “I have an advanced directive! You cannot do that!” I pleaded but they forced the door closed against me and locked it.
I screamed to no avail and then started hitting my head in terror against the door in an effort to get them to open it. This worked in a short time, and three aides were sent in. We sat on the bed frame and they actually held my limbs, i thought in such a way as to comfort me. Little did i understand the truth, because even as i very quickly calmed down, soon through the door, the same angry nurse pushed a big prison-issue restraint chair. She yelled at me, “now you are going to have to sit in this!!!
I yelled back, “No!!! No restraints. My advance directive says so!”
I want to interrupt here to quote the government’s own research. SAMHSA’s issue brief #1 March 2010 on promoting alternatives to the use of seclusion and restraints says:
“…the use of seclusion and restraint has often been perceived as therapeutic to consumers. This misconception has been challenged and refuted. Increasing research has identifed the role of trauma in mental and addiction disorders. Research into trauma and trauma-informed care identify common themes about the impact of trauma and how traumatic life experiences can impede an individual’s ability to manage his or her own behaviors or engage in appropriate behaviors in the community.
“Also, there is a common misconception that seclusion and restraint are used only when absolutely necessary as crisis response techniques. In fact, seclusion and restraint are most commonly used to address loud, disruptive, noncompliant behavior and generally originate from a power struggle between consumer and staff. The decision to apply seclusion or restraint techniques is often arbitrary, idiosyncratic, and generally avoidable . Moreover, some studies indicate that seclusion and restraint use leads to an increase in the behaviors staff members are attempting to control or eliminate.”
But they grabbed me and forced me into that chair and despite my struggles and terrified screams of protest they forced nine straps around my body, yes, 9-point restraints because K— J—-, RN, was still angry with me and refused to utilise our calming no-restraints, no seclusion protocol. This protocol had not only helped me but had also since then, so i was told, been used to calm and help other agitated patients without seclusion cells or mechanical restraints after i insisted that the unit staff start doing their “best to avoid restraints” with everyone, not just for me because my A.D insists on it.
Once strapped in to that horrendous chair, i screamed at the nurse, “You are just punishing me!” And calmly, she answered back, “Well, you threw hot coffee at me, what do you expect but punishment!?”
Then she walked out of the room, leaving two aides in the room to tighten the straps so tight that i could not move and felt the circulation in one hand go dead.
In horror, i shrieked for help. I pleaded for anyone to help me, for god’s sake. What the hell were they doing to me?!? Please just help me, someone!!? It upset the other patients to hear this just outside my room. I even begged them to put me in regular 4-point restraints on a bed where at least i could relax and fall asleep. Why hadn’t the nurse not brought me to the seclusion room to begin with, where the walls and door were all were padded if she was not going to follow the protocol?
In the end, it took two hours and two episodes in that terrible chair before they freed me.
That evening, as a response to the trauma, i defecated on the rug in the dining area, and painted with feces on the wall.
Surely this is no way to treat an animal, let alone a troubled psychiatric patient, especially not when there is already a calming,non-violent protocol set up to deal with her when she is agitated?
I say, chairs like this need to be trashed. Once a hospital orders one — and where do they get them? From prison suppliers!) they will use it. They say they use it for emergencies only, but as i have shown, once they have such a chair, it will be used abusively–always, always, always.
The only way to end seclusion and restraints is to stop it now and. For good. The more hospitals dilly-dally saying, soon, we will when we can, they will never stop. There will always been someone to say, no, what about this or that. But abuse is abuse and restraints are abusive by definition. Stop the use of a restraint chair and bed and all use of mechanical restraints by stopping. And then you will find a way to deal with problems arising that work better.
The painting i did below depicts the chair they held me in, minus the waist strap but with the toe restraints.
“There is no negative space, only the shapely void. Hold your hands out, cup the air. To see the emptiness you hold is to know that space loves the world.” P. Wagner
Pamela Spiro Wagner
rutland regional medical center
Rutland vt 05701
(Sorry but my last post about their use of the restraint chair was very unexpectedly deleted…i still have the draft and can find the emailed comments, but i dunno that i have the heart to repost it unless someone requests it…)
I was left alone like this, offered neither food nor water and given only an apple when I begged for one, for three days and two night at John Dempsey Hospital in the 1980s at University of Connecticut Health Center, in Farmington Connecticut. If anyone remembers having been through this, Please get in touch with me! ( If anyone know whether Jim or Don Steadman, the aides, are still alive, please let me know…or have them get in touch too. I believe they would remember attending to me while the doctor kept me trussed up like this…)
I do not know where this photo came from originally nor who made it but i obtained it from Sarah Grace Wolfram’s facebook page, so i am crediting her. In any event, what it says means the world to me.
I DID NOT CHANGE…IN FACT, MAYBE I NEVER NEEDED TO CHANGE, I JUST WOKE UP…to the fact that the world i had been living in was wrong.
I don’t know what to do. My skin is thinner than gossamer yet people think i am thick-skinned and hide-bound as a hardbound book packed with information and feeling nothing. They have no idea i feel everything from the words people speak to the experiences they have and they describe. I feel it all in and under my skin down to my marrow, i feel, how to explain the knife-edge sensitivity of my life? When Jesse blithely talked about breaking glass and stepping on it, the shard penetrating his foot, MY FOOT felt the glass pierce my arch and plunge straight up through my entire foot until it broke the skin at the top of my foot, and i had to muffle my scream of pain so i did not embarrass myself…it is always this way.
I do not “like” dogs but i feel them too. I feel them! I know where they need to be scratched under their chins and between their ears…always. And why? Because i myself feel it under my chin and between the ears. I love cats, yes. Dogs and cats both understand that i feel them. All animals know that i feel them. But it is too much for me. To feel everything and all that pain. In medical school i could not draw blood from another student because i was too inexpert at it and i felt the pain i was causing him…and despite my hardened exterior, i feel everyone’s pain and sensations, except perhaps their pleasure….i might be able to feel that too, but i distance myself from that because it feels like an intrusion on their privacy. When teddy lays his head on someone’s shoulder, i can feel that pressure on my shoulder. I do not know whether Teddy feels pleasure or relief, that is to say, viscerally, i could feel it, but i must not enter that feeling because it is too private.
I also know what people are thinking. I read people’s minds. They speak what they think to me, and i hear it out loud because they think too loud, but then i get confused between their thoughts and what only i can hear and i respond to what i heard out loud. Then things go haywire, because they say they never said such a thing, and others agree, and i look “crazy” because they did only think them. But in fact, i did hear them think it and they spoke it to me out loud with their thoughts, and my only crime was not knowing the difference and responding out loud. In such cases, they always have the benefit of plausible deniability, and i have nothing…but the truth of knowing what i know, which is that i know what is really going on.
This exquisite sensitivity is both a gift and a curse. Over the years the brutality of hospitals and “treatment” has forced me to try to ignore what i feel or at least pretend to. But things keep happening between me and others that force me to know more than i would ordinarily — if i did not have this gift/curse — want or have to know.
I was always told, “you are just paranoid” …”this is not happening”. And was made to ignore the reality of what i felt was going on around me, rather than speak about it and explore it. But i knew it was true, it was real, it was happening. You see, i feel people too, the way i feel animals, and i understand them, and i knew that they could not bear the fact that i heard their thoughts and knew what they really thought.
i always knew it was not paranoia, just truth they needed to conceal, due to fear and other difficult emotions. So they labeled me paranoid as a way to escape from admitting that i was able in fact to read their minds….
“In India when we meet and part we Often say, ‘Namaste’, which means: I honor the place in you where the entire universe resides; I honor the place in you of love, of light, of truth, of peace. I honor the place within you where if you are in that place in you and I am in that place in me, there is only one of us." ~~Ram Dass~~