Okay, herés the thing. Some 40 years ago I was sexually assaulted while I was on duty at the University of Connecticut’s Poison Information Center, in 1978 (when it was still called that…). I remember without a single shred of doubt who the man was, a dental student with whom I had been friendly when I attended the medical school at UConn. That DI – his initials- would recall this too, I believe is the case, because I believed him when he said he thought my “No!” meant that I really wanted sex with him. And we talked about his aggression against me afterwards.
But I also know that the security guard who heard my crying out and my struggles behind the closed locked door of the PIC and knocked to ask if I was all right’ definitely did not believe me when I opened the door and told him I was okay…yes, DI had stopped his assault when the guard knocked on the door, and he did not recommence anything after I Assured the guard that all was well. He got the point, that I was not interested in the sex he had tried to force on me…
But I was also not okay, certainly not with DI’s behavior. I told the guard all was well because I felt to blame, I felt guilty for being female and “bringing DIs attack on myself.” Not guilty for anything I did, but because of my body, because my body was a woman’s body and so that in and of itself made me “seductive”…I felt I deserved what i got.
This sexual assault happened, and I know it and who the perpetrator was without a shadow of any doubt and I have always remembered it. But could I prove it to anyone? I did mention it, later but not immediately. I had no female friends close enough to trust with my shame…but I did speak of it to several people over the years, whether or not they remember my doing so. I played down the attack as “date rape” rather than a “real attack” because I had been taught that attempted rape by a friend was somehow “less serious” than rape or attempted rape by a stranger…Let that sink in, please.
i do not know precisely what became of DI nor what sort of person he became after the event I describe, but I have always assumed and hoped that it was, as they say, a one-off Incident and Was not repeated. I assumed and hoped that DI learned from my reaction that No means No. and that he became a better person for knowing this. I gave him credit for apologizing or at least explaining why he attacked me…and I gave him credit for the ability to change and never do such a thing again.
So I KNOW that a woman like Christine Blasey ford would remember such an attack in detail and that her attacker esp if stumbling falling down drunk would have every motivation not to…
BUT I must say I did NOT believe Ford’s tearful voice or her tears. I found them utterly fake and rehearsed and it irked me no end. How disgusting that after nearly 40 years she felt it necessary to pretend to be afraid and to fake tears in her voice, high thin and fake fake fake…why would she believe this? Is a woman’s recounting of an assault only credible if accompanied by tears? How disgusting if so. But while I believe her story, i do not believe the tears were real and I found that just as disgraceful, the demands by Democrats that she put on such a fake tearful voice just to convince them of her credibility? Shameful that she could not trust her own words to be comvincing and all those senators and newscasters that fawned and cooed over her tearful voice are the ones who are guilty, forcing her to pretend to be overcome with emotions just in order to be believed that what happened did in fact happen.
I recently sent the letter below to Amazon.com. For those who wonder, I used the name they still had on their account for me, as my new name, Phoebe Sparrow Wagner, was not recognized. In return, I received a nominal customer service email, but none of the promised (or implied) follow-up after that.
The art posted at top was designed for a stop restraints and seclusion group logo in California, which ended up not using it.
Please feel free to use my words as a model or template for your own.
Solidarity! and in several other languages (chosen mostly at random): Solidarité! Solidarność! Solidaridad! Undod! סאָלידאַרישקייַט, համերաշխությու,სოლიდარობა Mshikamano!Umodzi! Ubumbano! تضامن (tadamun), Dayanışma,солідарність!
After reading about the conditions in your workplaces, and the careless disregard you, as Amazon, have shown for human dignity and the basics of humane treatment of your employees, I have decided to cancel a Prime membership I have had since its inception. I have shopped at amazon and been a loyal customer since you began. Indeed, you even sent me a coffee mug with your logo that first year. But no more. Not only am I quitting my prime membership but I will no longer shop at amazon.com or use any “benefits” that amazon claims to offer. Good bye and good riddance.
Pamela S Wagner A once extremely loyal customer, leaving In disgust
Someone I met here in Brattleboro, really just an acquaintance, maybe 2 or 3years ago said, “get over it!” about the trauma I have experienced, and I found that enormously damaging just in itself. My “guide” Wendy, never tells me such things and she is fully committed to helping people who deal with great traumas. Another thing is that true is that global amnesia, such as I had and still have for a couple of weeks-long hospital stays in their entirety, (and I also have amnesia for other life experiences that were documented as having happened but are lost to my memory,) this sort of global amnesia cannot be self-induced. You either can remember what happened or you cannot.
What I have found very helpful, and this may not be something you can or even choose to do, is this: I find that when my thoughts erupt or are triggered by something in the present, into a spasm of terrible memories, the resulting emotions and anger etc are so paralyzing and painful that I did consciously decide “I’m not going there, not until and unless it is safe for me to do so.” To that end, when I notice my thoughts turning bad, I immediately find anything to distract myself away from that terrible rut that trauma has clear-cut into my cortex.
I know the emotions stem from the thoughts I think, and they constitute the story about them I tell myself. So if I try to tell a different story, like, for instance, “okay, that was my life then, but I am here now and if Iam happy now then all of my past including the trauma, has brought me here and I would not be here without it all, yes,even the trauma.” BUT I fully confess that re-telling my story in a more positive way does not work when I am acutely triggered, so that is when distraction plays a huge role.
In some sense, I understand that I cannot remain attached to my story of abuse and victimization, because in areal way this will only lead me down that same trauma path, and even “attract further victimization and trauma”..But to explore these things requires a feeling of safety, which is not usually available, so I get relief from the thinking instead, by distractions and doing things with my mind that I love. Like studying or reading French, or listening to songs, because the verbal aspect of both tend to crowd out the insistent trauma memories.
As Wendy says, it is a practice, like any spiritual practice, to know when your thoughts are headed down an unhelpful path way and to consciously decide not to “indulge” their wish to ruin your day! It does take a lot of practice to do this, and I would be the last to say it is easy. On the other hand, I know there is a safe place for them, for me to experience the memories and even triggers in security, and that is during my sessions with Wendy. She allows these to be as long as necessary for me to get through things, so they are usually 2-2.5 hours every time. But the thing is, knowing I can hold on and let things “in” in a safe place with her allows me to also decide NOT to let them in or to control me at othertimes.
I hope this makes sense. It might not be your cuppa tea, and I dunno if you have a safe place/person with whom you could both process memories or at least let them out, but who also, by being a safe person, might allow you to go the distraction route. I myself have found it very helpful…and you know (I know you above all know!) how terribly I have been tormented by my memories of trauma.
The idea that even trauma memories are part of the story of our lives that we write or create and can de-create also helps me. Because I can decide, of, say, someone who brutalized me, well, in their story I was only a bit character, and they likely told and tell themselves something entirely different from my story about it. But I understand that these are all stories, all dramas, that are not really Truth…and if we can retell the story In such a way as to increase ours and the worlds happiness, that should be our aim.
More to come about blame and being victimized but I have stuff to do and need to distract myself from the pain that even writing about trauma brings on.
I am reprinting this here because it is so true, and because it cannot be located elsewhere on the net, at least not via Google…The author was brilliant but, alas, I can find no name for attribution. A BIG Thank you to Anonymous!
Criteria for Staff Personality Disorder
Staff Personality Disorder 601.83
A pervasive pattern of condescension, degradation of others, and controlling behavior beginning by early adulthood and present in a variety of contexts, as indicated by five (or more) of the following:
1. Condescending or degrading use of body language, vocal inflection, and behavior.
2. Presentation of two or more markedly different personality styles based entirely on context.
3. Persistent protection of people in positions of power even if such people have done something unethical or illegal.
4. Employment in one of the “helping professions”, or other situations in which a person has or can secure power over others.
5. Rigidity in application of rules and explanations to other people
6. Persistent or stereotyped use of euphemisms, jargon, deceptive language, and double standards in language
7. Persistent use of degradation, ridicule, and violence, either gratuitously or grossly out of proportion to the situation
The essential feature of Staff Personality Disorder is a pervasive pattern of condescension, degradation of others, and controlling behavior that begins by early adulthood and is present in a variety of contexts.
Individuals with Staff Personality Disorder display condescending or degrading body language, vocal inflection, and behavior (Criterion 1). They may use a patronizing “contaminated” smile, a sing-song voice, or the forms of language use described in Criterion 6. This behavior would be considered patronizing when directed at the average individual.
Individuals with Staff Personality Disorder present two or more markedly different personality styles based entirely on context (Criterion 2). For instance, while dealing with “clients”, while alone, they may be vicious, punitive, and controlling. When dealing with the general public, they may adopt a saintlike persona. It is not at all uncommon for the antisocial behavior of people with Staff Personality Disorder to go unnoticed, even when that behavior extends to torture or murder.
Individuals with Staff Personality Disorder will persistently protect people in positions of power, even if those people have done something unethical or illegal (Criterion 3). This may consist of putting up a “united front” to clients or to the public. People with this disorder will hide or excuse antisocial behavior in others with the disorder. Hiding may take the form of altering logs and failing to report abuse. Excusing may involve character assassination directed toward victims of mistreatment or abuse, or diminishing their credibility in some other way, while making it seem as if the behavior is the only logical response to certain sorts of people. They will also use these techniques of hiding and making excuses, to justify and rationalize their own behavior.
Individuals with Staff Personality Disorder are often employed in one of the “helping professions”, or other situations in which a person has or can secure power over others (Criterion 4). People with this disorder are disproportionately represented among psychiatric technicians, group home workers, home health care aides, social workers, special education teachers, counselors, nurses (especially psychiatric nurses), direct care staff, and institution staff. People with this disorder may also be grammar-school teachers, prison guards, and other professionals in positions of direct power over others. These positions may be either the cause or the result of the disorder.
Individuals with Staff Personality Disorder are rigid when applying rules and explanations to other people (Criterion 5). This, curiously but characteristically, may not extend to others with this disorder. Individuals with this disorder are likely to use a narrow set of rules to understand the behavior of others, particularly clients. They will see most ordinary behavior as manipulative, attention-seeking, or non-compliant. When confronted with something like violence on the part of clients, they will fail to differentiate between malice, self-defense, and frustration at being trapped. This may result in across-the-board application of punishments such as are described in Criterion 7.
Individuals with Staff Personality Disorder may display persistent or stereotyped use of euphemisms, jargon, deceptive language, and double standards in language (Criterion 6). They euphemistically refer to others as special needs, challenged, or consumers. They prefer jargon to ordinary language, and describe the behavior of others using clinical and psychiatric jargon, often loosely adding such jargon into everyday conversation, e.g. saying that someone they dislike has a Borderline Personality Disorder. They use deceptive language, for instance referring to prisons as hospitals and violence as treatment. They use double standards in language, e.g. referring to themselves as getting bored but to clients as going off task. They may apply certain words in a stereotyped fashion, repeating over and over that others are non-compliant, attention-seeking, manipulative, or playing games, without apparent regard to context or motivation.
Individuals with Staff Personality Disorder display persistent use of degradation, ridicule, and violence, either gratuitously or out of proportion to the situation (Criterion 7). Degradation may take the form of degrading language such as “retard” or “psycho”, denial or pathologization of the existing identity or roles of others (for instance telling someone that thinking he is a writer is a delusion of grandeur), treating people like children, or assigning humiliating tasks. More advanced forms of degradation involve using elaborate methods to thoroughly confuse a person’s sense of reality or self on all levels. Ridicule might include laughing at the aspirations or humiliation of clients, or laughingly dismissing their communication or behavior. Violence includes physical or sexual assault, mechanical restraints, chemical restraints, and solitary confinement. These things may be undertaken gratuitously, on a whim, as a result of boredom or frustration. They may be out of proportion to the situation, such as restraining someone for making eye contact with staff. These things are often justified using the means described in Criterion 3.
Associated Features and Disorders
Individuals with Staff Personality Disorder may have a tendency to take care of people who don’t need taking care of, or imposing their idea of care onto other people regardless of context or other people’s wishes. They may have a tendency to rationalize their own behavior in terms of helping others and be apparently unable to see their victims as fully human. They can be highly manipulative, especially to those they regard as inferior. Staff Personality Disorder may be associated with Stockholm syndrome and complex post-traumatic stress disorder in individuals who have been subjected to abuse by people with the disorder. Thus, a significant minority of people who are in institutional situations may develop features of this disorder or the full-blown disorder. Staff Personality Disorder is sometimes seen in the prodromal stages of developing full-fledged Psychiatry Disorder. Non-disabled children who participate in “Circle of Friends” and other helping-based friendship programs are more likely than other children to develop Staff Personality Disorder by adulthood, as are children who have been raised to be caretakers to disabled siblings or parents. People who go into the “helping professions” or who work in institutions are at high risk of developing Staff Personality Disorder, even if they have shown no signs of it in the past.
Specific Culture, Age, and Gender Features
The pattern of behavior seen in Staff Personality Disorder has been identified in many settings around the world, but is especially common on the top end of unequal power situations. Children imitating adults may transiently show signs that seem to point to Staff Personality Disorder where none is present. In the past, it seemed that Staff Personality Disorder was more prevalent in females, but it is now accepted that due to cultural pressures, it can present differently in males and females.
The prevalence of Staff Personality Disorder is estimated to be about 5% of the general population, about 80% among individuals who work in outpatient settings, about 95% among individuals who work in inpatient settings and other total institutions, and about 20% among inpatients and other people who experience prolonged abuse at the hands of people with Staff Personality Disorder.
While there is considerable variability in the onset of Staff Personality Disorder, there is almost no variability once it becomes entrenched in a person’s identity. The most common pattern is that a person seeks a job in any of a number of “helping professions” and is gradually molded into the behavior patterns that typify Staff Personality Disorder. There is a window of opportunity in acclimation to these behavior patterns, in which a person may still have the insight to quit their job or resist further indoctrination. Once these behaviors become entrenched, they are self-justifying and rarely respond to reason or therapy. This is enhanced by the fact that many people with Staff Personality Disorder spend a lot of time socializing with other people with Staff Personality Disorder. A minority of individuals, when presented with the evidence of the harm they have caused to others with their behavior, truly become cured of Staff Personality Disorder, although literature indicates this requires constant vigilance to avoid falling into their old behavior patterns. Some people with Staff Personality Disorder acquire a disabling condition or another mental disorder and recover after learning what it is like to be subjected to the behavior of people with Staff Personality Disorder, but others will maintain their staff identity even within the inmate role.
Staff Personality Disorder is about five times more common among first-degree biological relatives of those with the disorder than in the general population. There is also an increased familial risk for Psychiatry Disorder.
Staff Personality Disorder often co-occurs with Psychiatry Disorder, and when criteria for both are met, both should be diagnosed. In instances where it is related to the development of post-traumatic stress disorder or other trauma-related disorders, it should be diagnosed in addition to those disorders with a notation that they are connected.
Other Personality Disorders may be confused with Staff Personality Disorder because they have certain features in common. It is, therefore, important to distinguish among these disorders based on differences in their characteristic features. However, if an individual has personality features that meet criteria for one or more Personality Disorders in addition to Staff Personality Disorder, all can be diagnosed. Although Histrionic Personality Disorder can also be characterized by manipulative behavior, Staff Personality Disorder is distinguished by condescension. Paranoid ideas or illusions may be present in both Staff Personality Disorder and Schizotypal Personality Disorder, but in Staff Personality Disorder these ideas are limited to concerns about the behavior of those under the person’s control (often inmates). Although Paranoid Personality Disorder and Narcissistic Personality Disorder may also be characterized by an angry reaction to minor stimuli, the reactions in Staff Personality Disorder have to do with specific situations related to the staff role and distinguish these disorders from Staff Personality Disorder. Although Antisocial Personality Disorder, Borderline Personality Disorder and Staff Personality Disorder are all characterized by manipulative behavior, individuals with Antisocial Personality Disorder are manipulative to gain profit, power, or some other material gratification, the goal in Borderline Personality Disorder is directed more toward gaining the concern of caretakers, and the goal in Staff Personality Disorder is to maintain control over a specific person or group of people. Also, while individuals with Antisocial Personality Disorder rarely show remorse for their antisocial behavior, individuals with Staff Personality Disorder make heavy use of specific rationalizations to justify their behavior to their conscience. However, some people with Antisocial Personality Disorder may have co-morbid Staff Personality Disorder and both should be diagnosed in that case. Personality Disorder can further be distinguished from other personality disorders by the typical pattern of protecting others with the disorder and persistent use of euphemisms and jargon to describe one’s actions.
Staff Personality Disorder must be distinguished from Personality Change Due to a General Institutionalized Condition, in which traits emerge solely in the institutional environment due to the direct effects of people with Staff Personality Disorder on an inmate’s behavior.
It also must be distinguished from Factitious Staff Syndrome, in which a person without Staff Personality Disorder masquerades as a person with Staff Personality Disorder in order to assume the staff role and effect change for the better for those under the power of people with Staff Personality Disorder. Factitious Staff Syndrome does not qualify as a mental disorder, but individuals practising it unwarily may develop Staff Personality Disorder.
I knew we were stupid enough to select DJT, or to allow him to steal the selection…because we permitted the Supreme Court to select GWB too, then cowered and (also laughed at his willful ignorance for 8 years…) kowtowed …but Trump is only our just desserts, imho
My response four years ago to an article in CT papers about the use of restraints and seclusion in CT hospitals.
“As someone who has been subjected to more use seclusion and four-point restraints over the past “decade of change” than in the two decades previous it boggles my mind that anyone would even dare to state that things are improving in CT mental health care institutions. During my nearly month-long captivity in the winter of 2013, the Institute of Living in Hartford regularly restrained me to a bed for as long as 19 hours at a time, without ever releasing me for so much as a bathroom break — I had to defecate in my clothing. I was not even released to eat. When I was not in four point restraints “for not following directions, I was in seclusion, which they called the “Quiet Room” and not seclusion, but by CMS definitions, it was seclusion as I was separated from the rest of the patient population by force, and was not permitted to leave the room I was isolated in.
The one time I did actually saunter away, walk down the hall to look out the window, and return to my non-seclusion Quiet Room, I was punished with immediate use of four point restraints, into which I was placed without a struggle, hoping that would make it easier to win my freedom. Alas, for me, there was no way to earn freedom from restraints I never “deserved.” The entire point was discipline, and that would last as long as the staff wanted me to be in shackles to learn my lesson. There was literally nothing I could do, –stay calm, sleep, quietly ask for release — nothing, until they were finally satisfied that I was submissive enough to obey their orders, some 6-19 hours later. But I had to cry Uncle, and submit to a set of degrading humiliating “debriefing questions” that assured them that I took responsibility for my own being restrained and that my behavior would henceforth conform to their norms.
I was surprised to see Natchaug Hospital being given good ratings of any sort. One of their chief psychiatrists on the Adult Unit, a longtime presence their Chief Idiot Emeritus psychiatrist you might say, Paul Pentz MD was so insouciant about this job as to be nearly incompetent, but probably hard to fire even for negligence. HIs name I have mentioned . He routinely did drive-by visits with his patients– a wave in the hallway might not be a completely standard morning meeting, but it happened often enough that peatients knew that would be all of this doctor they would see for the day. He routinely discharged patients with GAF scores at or around 60, the highest “global assessment of functioning” that one can have and still be rated “disabled” — not because he knew this level of functioning to be the case, but because it made him and his psychiatric ministrations at Natchaug look good. After all, if person comes in with a GAF in the 20s, and barely able to function, and you discharge him or her a week or two and some drive-by counseling sessions later with a GAF of 60, you must be doing a terrific job, esp for a 75 year old doctor not too keen on using anything like trauma-informed or patient-centered care. I had never left a hospital before Natchaug with a GAF higher than 40, but suddenly I rated a 60….by a doctor with whom I never spoke.
Natchaug Hospital, when the nursing director was Sharon B Hinton, APRN, was a decent place, because she made certain that abuses like restraints and seclusion rarely to almost never happened under her watch. I know, because I was there about three times during her administration. I also knew her when she was Hartford Hospital’s psychiatric Head Nurse at CB-3, where she and her never failing humanity and respect for the dignity of every patient made all the difference in the world. I might have come from an abusive hospital in the early 90s, like University of Connecticut’s Dempsey Hospital, which in those days four-pointed people to an iron bedstead, by shackling them spreadeagled to the four corners of the bed, a stress position that is not just tantamount to but is in fact torture. But I would be rescued by someone finding me a bed at Hartford Hospital, where Sharon would discover me arriving there in tears and tell me, unfailingly,”Its not you, Pam, you did nothing wrong, It is the hospital that treats you badly…We don’t have any problem with you, because we treat you well and you respond to it. When they treat you with cruelty, you respond badly…That’s very normal.”
But as to Natchaug…Bravo if they have done away with restraints completely. They had not done so when I was there last in 2012. Nor with seclusion, which was imposed in mostly a disciplinary and arbitrary fashion. Largely it was used to force medication on loud obstreperous patients or for angry fed-up senior nurses to take out their peeves on patients they didn’t particularly like (e.g. me). I still remember one APRN demanding that I be dragged to locked seclusion, and left there alone (despite all Sharon’s previous assurances that such would NEVER happen, that someone would ALWAYS remain in that room with me if I ever ended up there.. Alas, Sharon had left by then, so rogue nurses like D could have their way…) and when I peed on the floor in panic, and took off my clothes they rushed in to take them away from me, and inject me with punishment drugs, then made me stay for an hour alone on the pee-soaked mats, freezing cold, pretending to sleep and calm myself just to convince them I could leave and not bother anyone. I managed to do so, or at least the APRN D. got over her fit of pique and finally released me, but I was not really calm, and when they finally draped two johnnies over my naked body so I could decently traverse the distance to my room, I left, disrobing as I went…Who gave a damn about my flabby flat behind? I certainly did not. And it served them right if everyone got an eyeful…served them right..
Natchaug’s biggest problem was and probably still is a lack of staff cohesiveness and bad morale between the staff nurses and the well-educated techs/mental health workers who were all very dedicated college grads but were treated like grunts…The MHW’s did most of the important patient contact, but were not trusted to write patient notes, or the notes they wrote were never read, or accorded any import. This was not just despicable but very unfortunate in more than one instance during my stay, as the notes they took personally might have saved me from some terrible misunderstandings and outrageous misdiagnoses that harmed me terribly..
Most places use techs who are trained by shadowing for a day or two, which means, badly trained, if at all…
You have to take all such in-hospital diagnoses with such a heavy grain of salt, you know, even when they are labeled with the words, “THIS IS A LEGAL DOCUMENT.” Because they get so much of fact-checkable, factual material garbled that you cannot believe a word it says. And as for diagnosis, well it is all of it opinion, one, and two, it depends largely upon whether you are a likable patient or a disliked one, what they finally say about you on any given day. No one should have that sort of power over another human being, frankly. And the idea that they can brand one for life with certain psychiatric diagnoses just sickens me.
Be that as it may, my recent last experience was beyond the beyond, at Hospital of Central Connecticut, The old New Britain General…and I expect to go back to talk to someone there about it. I always do And I have much to say to them, after the pain and rawness have worn off a little. They considered it SOP to strip me naked and leave me alone in a freezing seclusion cell without any access to human contact, unless they chose to speak to me over a loudspeaker hidden in the ceiling. If not, I was utterly abandoned, no contact or even view of another human being for as long as they wanted to keep me secluded. They also restrained me, having male security guards four-point me stark naked to the bed, before they had the decency to cover me with a light sheet, even though I begged for a blanket for warmth. (A nurse manager came in and shivered, saying “Brrr its cold in here!” but did they relent and let me have a blanket…No, clearly I was not human, didn’t need warmth.)
This is just the tip of the SR iceberg in CT in the current years, Remember this is happening right now, not ten years ago, or before the so-called reforms. Nothing is getting better. Things are worse than ever, And when you are a patient in these hospitals, you have no help, no recourse, anything and everything can be done to you and you have no way to refuse or say “no”. No one will help you, or offer assistance. They can just grab you and seclude you or restrain you without your having the power to stop them or any recourse to make them pause and reconsider. You are powerless to stop anything…And so they get away with it every time. And once it is done, who will fight for you? What lawyer will take your case if the guards hurt your shoulder rotator cuff, or bruise you up, or degrade or humiliate you? No one….so you are deprived of your human and civil rights, completely, but the hospital knows that no one cares enough to fight for you, so they get away with it each and every time, and they know this when they do it. They have nothing to worry about,….You are just another mental patient, a nobody, a nothing.
That’s what you are if you are diagnosed with schizophrenia and hospitalized in CT hospitals in 2014. A nobody that the hospitals can abuse with impunity and will. Just wait and see if any of this changes…I doubt it highly. They have no motivation to change. They don’t think they are doing anything wrong now.”
I have been able to speak now for at least a month, but before that there were four months of what I can only call subconsciously self-imposed silence. Not “selective mutism” because I did not speak at all. There does not seem to be any term for this intermittent affliction, when I cannot speak for long periods of time, but as my poem says, “Nothing locks my lips or seals my tongue” — a paraphrase I fear because I do not recall the exact words.
I would write more, but I have no time this morning. I post this small, 3.5″ by 2.5″ drawing because of Sue B’s comment on my most recent post…as it most eloquently I think answers her question. Whatever the reason for my muteness, I do not consciously choose to go silent. It simply happens, with a bang, so to speak.
This muteness can lift, I have found, with music, with singing, and people encouraging me to sing…and then to sing-talk my words, until finally I “forget” and simply end up speaking.
Here is the poem I wrote that expresses some of htis, It can be found in my newest book, LEARNING TO SEE IN THREE DIMENSIONS, available on Amazon and through any bookstore.
I haven’t spoken out loud for many weeks,
bullied by “voices” to a frightened into myself silence.
Still, what does “speechless” mean
in these days of text-to-speech software,
with its choice of Vikki or Samantha or Victoria voices,
especially when I’m possessed of a blog and writing fluency
enough to speak my mind to my heart’s content?
Even so, being mute is not a manner of speaking.
Yet I tell you I cantalk. Nothing physical impedes
my tongue, or locks my lips
except my brain’s hallucinated snarls,
Jerry Mahoney and Charlie McCarthy thrown
into surrounding shadows
ordering up this stoppage, blockage, blockade.
Now, like Stevens’ fire-fangled bird at the end of the mind
feathered unlucky, tarred, locked in golden cage
my voice remains only a memento
I wanted to say, but could not get out,
I couldn’t get it out, I could not get it out…
*In the Greek myth, Philomela is raped and has her tongue cut out by Tereus, the husband of her sister Procne. Rendered mute, Philomela weaves a tapestry detailing the crime to inform her sister, who, enraged, takes revenge on Tereus. At the end of the story, both Procne and Philomela are transformed into birds. In some versions of this story, Philomela turns into a female nightingale, while in others she becomes a swallow. However, neither of these birds can sing.
*Jerry Mahoney and Charlie McCarthy are two famous American ventriloquists’ dummies
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?
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.
Dear Dr Joseph Lasek, as a recent Alyssum guest, i loved your testimonial on the Alyssum website. Your compassionate writing painted an entirely different picture of the man who just a year ago signed an order refusing to release me, a woman who had not been able to speak aloud for days, (indeed i have a history of having been completely mute for months at a time) from 5- point restraints until i spoke out loud.
Yes, the nurse Annette Brennan wrote that order, and informed you not only that i could speak but that i “refused to” and so you, yourself told me in no uncertain terms, that i would remain in restraints until i obeyed your orders.Despite lying quietly and complying with the restraints, triggering an assessment every 15 minutes, your staff refused to ask me the necessary questions to remove even one restraint and left me alone in that room, time after time, motionless and mute, all because they and you had decided to force speech out of me.
Why? Did you believe you had the right to do this? What had i done to you to make you so angry with me? Why didn’t i have a right to communicate however i chose to or needed? I understand that you believed that i *obstinately* refused to speak to you…and you may continue to choose to hold that belief. I cannot change how you think and i refuse to defend my muteness in the face of your ignorant assumptions.
What i will assert is that the use of restraints has never been or should never be about the power you hold over one of your patients, and it should never be about your power to force a patient in restraints to do something you want her to do. In most parts of the world, and in most people’s minds, for you to force me, by means of physical coercion, to speak out loud would be called torture. What else is it?
What did it matter really why i did not speak? So what if i was obstinate, or unable to form words…neither reason matters a fig. Your only justification in keeping me restrained was if you knew or had determined by communicating with me that i was a danger to myself or others. But time and again, you did not even try to find that out, no.
You assumed things, yes, you assumed that if i kicked the nurse, whose groin inappropriately pressed against my bare feet, a sexual maneuver on her part, that i was aggressive. But you refused to ask me what happened or how i felt or what was going on. You used none of your apparently great capacity for empathy when it came to finding out from me what was going on and how to end the situation as quickly as possible (as you claimed was your desire).
If you really wanted me out of restraints asap, why did you refuse to let me communicate in any fashion except speech. You would not even phrase your sentences in such a fashion that i could answer them with a shake or nod of my head.
So this went on for hours, my frustration and anxiety growing since i was told you refused me even 1/2 mg of Ativan for sleep, for mercy sake. Finally nurse Manusukhani asked me the safety questions at 5:00 am and i answered them all, still mute, but satisfactorily. But the restraints were not removed. No, i was left alone for another hour. When the nurses returned they wanted me to write an essay with a safety plan with one hand, upping the humiliation and degradation till i could not take it any more. I simply shut down and refused.
You won, then. You broke me. I have suffered from that torture every day since that night, a year ago. i did not speak aloud that night, and the next shift took me out of the restraints even though it contravened your orders, because they understood it was an illegal order.
How did you feel about that, feel thwarted, angry? Probably, since you had not been able to successfully break me, break my back and force me to speak…sorry, sorry sorry,
The thing is, my speaking had nothing ever to do with you nor my refusal to speak, that was always only your interpretation. Alway only yours and the nurses interpretation. No one ever asked me why i did not speak, they just made assumptions and always they had negative connotations,,,
Why did they always think the worst about me? They knew nothing at all about me. Dr Malloy had never taken any history, and never talked to me, except to talk at me and dictate to me what he would do if i did not obey his orders. What did i do to deserve this? I had an advance directive before i came into VPCH. Did you ever see it before or during the time i was in restraints? It advises to never use restraints or seclusion as i will only get worse and be further traumatized, but it also provided multiple suggestions for what nursing staff can do instead of restraints or seclusion, none were tried in the minutes before Brennan brought that restraints bed into the room.
I think, from your Alyssum testimonial, that you are probably a very nice guy. I liked very much what you wrote there, and i think alyssum is a wonderful wonderful place. I will never go back to a hospital so long as alyssum, is available to me in any fashion. hospitals only and always torture me. People like you misunderstand and hate and torture me, and seem to get pleasure doing so. I do not understand why…
Now i have to tell you, if you have gotten this far, that i have filed a formal complaint against you with the board of medical practice. If i had been been permitted to speak with you and nurse Brennan and the others face to face and use non violent communication techniques to resolve what happened between us, maybe i would not have had to do so. But the psychologist Elliott Benay would not get people to talk with me, as i proposed and instead told me to do what i had to do.
So complaints were filed and the hospital has already been cited for violation of my rights. What will happen will happen. It wont be bad for you, as you can imagine, nothing bad ever happens to doctors, who always walk away from their misdeeds with a slap on the wrist with a wet noodle; their patients suffer the agonies of hell or iatrogenic illness,you know this or you ought to. I dunno what else to say, you are likely preparing a mental defense of yourself and your actions even as you read this, rather than seeing that perhaps i write the truth, and preparing an apology that might go a long way towards healing the suffering you caused me.
Do you think psychiatrists ever apologize for anything? No, i think it is something they cannot bring themselves to do, not to a patient, it would cost them too much pride and suffering, they would rather the patient suffered…
Nevertheless, I forgive you.
Sadly, forgiveness does not seem to heal or help my suffering, or not yet, possibly because i do not believe you will read this letter. Much less respond. Of course you will not respond, who am i but a stupid mental patient?
no, i will tell you who i am. I am a three-time author, one book of mine was a best selling memoir from St Martins Press for many years. I am also an artist and poet, who, if you will forgive me a tiny bit of pride, will one day be more famous than you ever will. Mark my words. *You* may never hear from me again personally, but someday you will see and hear my name often, just wait.
Sincerely, from the 63 year old woman you kept in 5-point restraints last November, because she could not speak.
Pamela Spiro Wagner
so i went to the commissioners hearing to appeal the APS unsubstantiated decision about Annette brennans part in the above, you can find my account of these events elsewhere in my blog if you do a search on VPFH…anyhow, she took umbrage at my asking her not to call me Pam but Miss Wagner, and rubberstamped the Aps results despite my lawyer arguing on my behalf and my presenting a half hour case…here is her decision, which says nothing about the hearing,
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
After they had me trussed up in restraints…No, let me back up a bit, because it was not that easy…Hannette was the point person, shall we say, the person who had my head between her hands and was cradling it, “oh so gently” as she “oh so soothingly” commanded me to CALM DOWN RIGHT THIS MINUTE!” Again and again, she subjected me to these absurd demnds as if I could possibly do so upon her order. And as if I ever would do anything but attempt to writhe away from her clammy awful grip on my ears that nearly deafened me to her voice even so.
Finally the job was done and they had fastened a thick plate of velcro across my chest so I could not even sit up or do more than bend my neck a bit to see their handiwork, briefly, before i lost strength and had to lie back down. But I was emotionally overwrought with the situation, and what had happened in the space of only minutes.
WTF? How could this have happened when all I ever wanted was an Ativan to calm down and help me speak? And now what?
But they just trooped out, with Annette leaving last, saying, “You will tell us in WORDS when you are safe enough to be released, or you will remain in restraints.” She then departed too.
Although two monitors were posted silently in the adjoining room, I could not see them for my position, nor were they permitted to speak to me, as I knew from prior experience. I let out a scream that echoed through the empty chamber like a banshee howl but it made no difference. Yes, I could hear Chelsea from somewhere, — a sweet female staff member who remembered my Advance directive and the other times I had been restrained — saying, “Pam, take a deep breath, try to stay calm, I am here, you are not alone…” And I mentally thanked her. But as soon as I could remember that she was there, she was taken away, removed by someone who was told not to talk to me….and so it went. A Dr. Lasix came to me within the half hour and told me he wanted me to come out of the restraints as soon as possible but I would have to agree to talk with him. What did I have to say to that?
I could not respond with a shake of my head or a simple nod so I remained silent. He shrugged and left.
Several people attempted to engage me in conversation, but as no one phrased their comments as Yes or NO questions, I had to remain still. I was not unwilling to answer, simply unable to. But time and again they told me I was “unresponsive” or non-compliant, though I was calm and had been rewarded with the requisite assessment to possibly come out of restraints every fifteen minutes. But no one let me, because they would not let me answer their questions without speaking aloud.
The hours passed. First one then two then three. Finally the nurse Jennnifer decided to relent and allow as how I might answer the safety questions with a shake or nod of my head.
“Will you remain safe and not hurt anyone?” she asked me, standing above me.
I nodded my head.
“Will you remain safe and not attempt to harm y0urself?”
I nodded again.
Will you get up go back to the unit to and to your room and continue to behave safely if we let you out of restraints?”
Nod nod nod.
Jennifer seemed happy with my responses but also at a loss as to what to do with them. She paused. “Okay, thank you Pam. I have to go back and confer with Hannette and see if she will agree to take you out of restraints now that you have agreed to be safe.”
She left, turning her back, promising to be back within a few minutes.
Instead, it took a good half hour, and when she did, both she and Hannette arrived with a plan. “We have decided that we want to free up one hand and you will write a safety plan with the free hand. Then we will approve it and if it is adequate we will see about taking you out of restraints.”
I frowned. Even as she spoke, Hannette had moved to the end of the gurney where my stocking feet lay exposed. Her belly squished against my toes and soles of my feet, and I felt an immeidiate disgust and worse. I felt instant revulsion, as if I were being deliberately molested by someone who knew I was helpless to resist. So I kicked at her mightily. If I could have spoken in words I would have yelled something too, like “You effing …something or other…!” but alas, I could say nothing in protest, only scream, and kick. This did have the effect I wanted of getting her to stop and move away. Someone told her to move past me at the head of the bed next time and she did…
But the safety plan writing thing was their way of upping the ante abominably. How dare they? They had already illegally kept me restrained in FIVE points for far longer than necessary, just because they wanted to prove a point and force me to speak. without even offering me Ativan to calm down let alone to promote speech. Now this??? I flat out refused. And so somewhat triumphantly they trooped out, leaving me alone again, still in restraints at 6:00 o’oclock in the morning.
I knew I had to remain as still as possible to earn yet another assessment within the next fifteen minutes. But my muscles and veins hurt becuase I had remainedstill for so many hours, and no one had done any range of motion exercises on me, actively or passively. I was becoming afraid that I would develop a blood clot if I did not move my limbs on my own, and no matter what they interpreted it as, I began a methodical program of movement. I carefully circled each leg ten times in each direction, the restraints clanking as I did do. Then I bent each knee up and down, up and down. Ditto with my arms, until I was satified that I had exercised them at least a minimum and could relax into the required absolute stillness for the next fifteen minutes so I could earn an assessment.
Finally, Jennifer returned a final time. But this time it was only to tell me that they were leaving for the night. “First shift will have to take you out of the restraints. It is too let for is now.”
when end I herd this, I let out a bnshee scream of exhaustion and utter frustration, but it was too no avail. Only when first shift finally came on and found me still in restraints at 7:00 am did they relent and give me Ativan and take me out by 7:30.
“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~~
“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~~