Category Archives: Schizophrenia

Health, Life, Schizophrenia

“Lady Quixote” on Recovery from Hearing Voices

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Today I have a guest poster, someone who has been contributing a lot of comments to my blog and who wrote one that I thought deserved a post of its own. Without a lot of introduction, since she tells it pretty much as it is, I offer the following: one brave woman’s unique and amazing recovery story.

From “LADY QUIXOTE”:

I believe it is a normal part of grief to have moments of hearing and seeing those close to us who have died. This is true of our pets, as well as the people in our lives, who have recently passed on. I’ve experienced it, as have many people I know, most of whom have never been diagnosed with any kind of mental illness.

What I don’t know, of course, is whether these experiences are “real,” meaning do they exist independently of our own grieving mind? I believe that at least some of these ghostly grief visitations may be real. The reason I think this, is because on two separate occasions, with two different deceased loved ones, my paranormal experience was witnessed and experienced simultaneously by other people who were with me at the time.

 

Life is a mystery. Death, even more so.

 

When I feel that someone who has recently died may be trying to communicate with me in some way, I tell them that I appreciate their caring enough to contact me, and that I miss them and hope they are in a wonderful place where I will join them someday – but to please refrain from contacting me again, because it is a “trigger” for the schizophrenia I was diagnosed with in 1967. I have not been bothered with continual voices since 1969, and I don’t ever want to go back to that miserable real-life-nightmare, again.

 

In most cases, when I make this request, the “visitation” immediately and permanently stops. On the rare occasion when it has not stopped, I prayed to my Creator for help and protection, and I also studiously ignore the voice or vision, and in every case it soon stopped.

 

My voices started when I was 14, shortly after my paternal grandfather died. His spirit seemed to visit me twice, the first time immediately after his death, when I was sitting at my desk in school and had no idea that my grandfather was about to die. Suddenly, I “knew” he was dead. It was so real, that I started to cry, right there in the classroom. When I got home from school that day, my mother met me at the door and said, “I have some bad news…” I stopped her and said, “I already know what it is, my Grandfather ‘R’ died today.” She asked me how I knew, and I said I “just did.”

 

A few months later a friend of mine introduced me to her Ouija Board. She said it was a tool for contacting the spirits of the dead. I had never heard of such a thing and was eager to try to contact my grandfather through her Ouija Board. We seemed to have success in contacting some kind of spirit, but whatever it was, it wasn’t my loving grandfather

 

My friend who owned the Ouija Board then decided to hold seances with me and some of our other friends, but nothing much came out of those, except that one girl starting screaming at the top of her lungs during one of the seances, saying that she saw a horrible vision. But no one else could see whatever it was that had her so terrified.

 

Around that time another school friend told me he had heard about the seances I was involved in, and he loaned me a book which he said gave excellent instructions on how to contact the dead. I don’t remember the name of that book, but it should have been entitled “Spiritism for Dummies,” or better yet: “How To Become A Schizophrenic in 5 Easy Steps!”

 

That book gave point by point instructions for things like “autonomic” (spirit) handwriting, and also on how to become a medium, so that spirits could use your body and your mouth to speak through. Good grief, what was I thinking when I went ahead and followed those instructions? I really must not have been very bright, when I was 14.

 

So, naive me, I carefully followed the book’s instructions and put myself into a trance, then I called forth the spirits, and – lo and behold – suddenly my hand was writing words all by itself, and the next thing I knew, I had a head full of loud voices that would not shut up even for a second. My only escape from the nonstop circus in my head, happened when I was asleep. During my waking hours, every moment was a real-life NIGHTMARE.

 

I begged the voices to PLEASE go away, go back to where they had come from. But they just laughed, cursed, and mocked me. Sometimes they told me to kill myself if I didn’t like my life anymore. They even told me to pray to Satan, since praying to God didn’t seem to help. Truly, I was in a living hell!

 

In desperation I went to my mother and told her about the Ouija Board, the seances, the How-to-be-a-Medium book, my “success” with autonomic spirit handwriting, and the visions and the voices that would not leave me alone. I desperately wanted help to get rid of those maddening voices, because I couldn’t even go to the bathroom without a crowd watching, mocking, and commenting! I couldn’t have a private thought without a multitude listening to it, and commenting and mocking me for the silly 14-year-old things I thought about! I asked my mother if she knew what I could do to make the horrible spirits go away?

 

My mother responded by making ME go away. Although I had never tried nor threatened to harm anyone, myself included, she immediately put me into a mental institution. The year was 1967, during that era when the answer to mental illness was to drug you up, lock you up, and throw away the key. My mother assured me that I would only be in the institution for a few weeks, until they made me well. But right after taking me there, as I later learned, she went home and took every item I owned to the town dump. I was never supposed to come out of the insane asylum, you see, because the schizophrenia I had been diagnosed with was “incurable.”

 

One of the other young teenagers involved in our seances, also ended up hearing voices, seeing visions, diagnosed schizophrenic, and committed to the same insane asylum. He had been trying to contact his mother, who died when he was six.

 

After nearly 2 years in the asylum, a social worker who saw me periodically because of my young age, asked me why I was there, when I always “seemed” so normal? (I was asked that question a lot, because I was not one of those who went around behaving oddly. I never talked aloud to my voices; I had no need to, since they could hear my thoughts, anyway.)

 

I told the social worker that I heard voices, and she asked me how the voices had gotten started. So I told her all about the Ouija Board, the seances, and the book on spiritism that had taught me step-by-step how to put myself into an hypnotic trance and contact the dead.

 

Then this brilliant social worker said, “Well, it seems to me that all you did was hypnotize yourself into hearing voices! You’ve seen hypnotists on TV, haven’t you? How they can hypnotize a person into believing something ridiculous, such as that they are a dog, and the next thing you know that person is barking and behaving like a dog? Then the hypnotist gives them the suggestion that they are no longer a dog, that they are themselves again, and they instantly revert to their normal human behavior. Why don’t you try hypnotizing yourself once more, and while you are under hypnosis, tell yourself that the voices are not real, and that when you wake up, you will not hear those voices, ever again.”

 

I went back to the ward, got into my bed, and did what she said. I highly doubted it would work, because the voices seemed as real to me as anything – how could I make myself believe via hypnosis that they were not real, when I “knew” better? But, I went ahead and tried the self-hypnosis-reverse-suggestion like my social worker had advised me to do, and…. IT WORKED! When I woke myself out of my self-hypnotic trance, the voices were GONE! There were only a few, very distant, occasional “echoes” of “little voices” now and then, for a brief period of time, but they were so quiet and intermittent that they were very easy for me to ignore, and soon even that stopped.

 

In this manner I have been free of voices, 99% of the time, since 1969 when I was 16 years old. I have also not taken any anti-psychotic medication since that time. The only exception to my not hearing voices is, like I said at the beginning of this long-winded post, when someone close to me dies. But in every case, I handle it by telling them to please leave me alone, with a brief explanation of why I need for them to leave me, and most do so immediately. Those that do not comply with my request, quickly go away after I pray to the Lord for help, and then I tell the voices to “get behind me,” and after that I ignore them until they get bored enough, I suppose, to go bother someone else. 😉

 

Today, my residual “mental problems” have to do with my chronic PTSD, general anxiety, and an occasional dark depression. I am in therapy for those things, and I also take a low dose of an antidepressant and an anti-anxiety medication. But I have no schizophrenia, and no psychosis of any kind, not in over 40 years, YAY!

 

I shared my story here in the hopes that it may help you in some way. You are someone I feel very privileged to call a friend, and I feel sad when you are having a rough time.

 

Health, Mental Health, Mental Illness, Schizophrenia, Trauma, Uncategorized

Am I Crazy? Hallucinations, Delusions or Consensual Reality

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What is real? Is anything true and factual? Or are we all just deluded and mad as hatters? This is a serious question.

What I recall and what was written down in my chart about a certain four days in July 2012 are so different it is difficult to figure out whether my experience was fact in any sense of the word or, as “they”claimed, simply paranoid and delusional. Of course there is some truth in paranoia and delusion, since even a paranoid’s beliefs are based in feelings that arise honestly and from a foundation, I firmly believe, in true things sensed but unacknowledged. Feelings always have their own veracity. But whatever the philosophers may say about the fiction of facts, still there is, there must be, something more to the consensual world of what happens than mere perception.

I mean, either that security guard in the Emergency Department last July deliberately attempted to strangle me, or he did not. Either it happened or in some fashion I imagined it. It is that simple, isn’t it? Yes or no, red or green, one or zero. Like a digital configuration, there’s nothing vague about it: either it happened or it didn’t.

There are records. I know what the ones they wrote say, as far as they go. But how to interpret them since so little was written down, and unless my memory is so completely at odds with reality as to have confabulated the entire episode – which by the way, is what they claimed all along – how to explain the discrepancies when so much is not even mentioned. That they whisked my gurney into a seclusion room and assaulted me en masse is my version. In theirs, the room change is noted only in passing, and of the IM medication all that is said is that it was given “NOW”. Nothing else of the incident I recorded in great detail in my journal some days later, and raged about from the first day I was admitted to the day I left. In fact, I’m still outraged, months later.

I wanted to go home, they wanted me to stay. That I was abjectly terrified of being kept there meant to them that I was “paranoid.” I claimed I had no problems and had never been diagnosed with a psychiatric disorder. That was a problem for they had more power than I did as well as my lengthy psychiatric history on their side to prove I must be crazy to make such a claim. Worse, I was loud, demanding, and in my increasing panic, getting angry. They saw my screaming as a threat. Even though I was blind to what was going on, any onlooker could have seen that I could not win and in the end of course I lost mightily.

But let me go back towards the beginning.

It didn’t help that I had arrived at the ED by ambulance and immediately refused to have my “vitals” taken, asserting that I was “fine!” I then accused the nurse of just wanting to get paid for taking them. In short order I was whisked to the so-called “purple pod” where the psych patients were buried for hours until the on-call psychiatrist deigned to come down to see them.

“Here,” someone said, thrusting a hospital johnnie and a pair of pajama pants at me. “Undress and put these on.”

I looked down and saw that I was already wearing pj pants from another hospital. No one ever knew the real nature of what I wore — they simply passed for scrubs — and they were so comfortable that I kept them on day and night. “I’m already wearing pajama pants. I only need to change my shirt,” I said.

“No, you are wearing very nice blue slacks. Now, put on the pajamas, or do you want a couple of strong men to put them on for you?”

“Actually,” I sniped, “they are hospital pajama pants. I pilfered them from –“ and I named the hospital. But I made a show of undoing the snaps so they would see that I was going to comply. The last thing I wanted was anyone touching me or “helping” me undress.

Soon an APRN, came by and I thought, Wow, they are quick here, maybe it isn’t so bad being taken to a big hospital. Maybe I can get discharged from here in no time. Unfortunately, she was there only to do a 15 second “physical exam” that consisted of looking in my mouth and listening to my back with her stethoscope. Period. Pronouncing me cleared for a psychiatric interview, she rushed off to clear someone else. Then I sat on the gurney in my cubicle and waited. And waited.

I remember being cooperative for what felt like a long time. I tried to sleep, and I listened patiently to what was going on around me. I swore that I would simply hold my breath and bide my time until someone saw me, so that, calm, I could present my case and they would see I was safe and sane enough to be sent back home, not admitted or sent to some hospital against my will. But it was taking so long, it was taking hours for someone to see me, and I knew they were doing it to me on purpose. Did they think I, too, was drunk or on drugs just like the others here? I started to complain that I had waited long enough and needed to see someone. I was NOT drunk, did not need to dry out. Where was the doctor? There was nothing wrong with me, I did not need to be here. I wanted to go home!

Things started happening then. Memory fails me however and even the chart, which I just obtained a couple of days ago leaves out way too much. All it says is that I was uncooperative, then irritable, screaming and combative. Meds were “offered”.

I remember this: When I refused to take soul-deadening Haldol by mouth, they descended on me, wheeled my gurney into a solitary room and jumped on me, intending to inject me by brute force. In the struggle, a guard gripped my neck and compressed the arteries, strangling me. I tried to get the nurse’s attention, burbling through forcibly compressed lips that I could not breathe. But her response, attending only to her needles and not even looking at me, was an impatient, “You’re all right!” In a pulse of panic, I jerked away as she started to shove the first needle into my arm.

“Damn!” she cried as a rush of blood spattered us and the needle danced away from my skin. “Hold still!”

I’d hoped to get some respite from strangulation but instead of letting go of me, the guard reasserted his grip on my neck and pressed down harder. I felt the light go black as blood failed to reach my brain. Darkness descended. Sounds grew confused and dim. Suddenly I knew that I could die, that this was how patients had been “accidentally” killed during notorious restraint episodes in Connecticut. I did the only thing I could: I went limp, hoping the nurse would get the injections over with quickly and that the guard would not kill me before she was through.

One, two, and then, astonishingly a third needle punctured my arm. She wiped my deltoid muscle with an alcohol wipe then removed herself from the gurney. “All done,” she said, removing her gloves with a smack and she nodded, indicating the door.

With a cruel leisure, the guard let go of my neck, but he leaned down as he did so and muttered in my right ear: “That’ll teach you a lesson about bringing a JCAHO case against M— Hospital…” Then he and all the others strode out of the room, leaving me alone in what I had already been warned was a soundproof room where you can “scream all you want, but no one will hear you.”

In other circumstances, I would have screamed, soundproof or not, as the door was left open. But nothing was ordinary anymore. A guard –  thuggish bully, no doubt a reject from the police academy — paid to protect people, had just partially strangled me in revenge for – what? What had I done to him? My case against that other hospital should have meant nothing to him. But what was clear to me, trying to get a breath and calm myself, was that I was not only not protected in the this ED, I was in mortal danger. I could not scream or rage in outrage, I could not even complain or demand to see a patient advocate. My life was imperiled. Still panting, trembling, in shock, I lay in the semi-dark of that single room and prayed — not to any god, mind you, but simply for my life, prayed to get out of that ED alive. I promised myself that I would not say or do anything “wrong,” would comply with everything they asked from then on in order to survive the night. But it was a long night ahead of me and I had no idea whether or not the guard would come back and finish the job. I was so terrified my teeth chattered. I felt a hollow coldness inside me of unutterable fear. And there was nothing I could do but lie there and hope he did not return.

__________________________________

I did not name the hospitals in the piece above, though I usually do, and I refrained from doing so because I do not know whether what I am going to write now is indeed true or not. But if it is not, then I do not want certain people being alerted to this blog post and reading it and taunting me with “Yehaw, we got away with it!” Read on, and you will see what I am talking about further on.

So as I said, I am in possession of my chart, the entire thing, 60 pp for a mere four day stay in the hospital about which I speak, including an approximately 10 hour stay in the ED.  In it, there is absolutely no evidence that anyone ever took me or what I had to say seriously at any time. Everything I said was dismissed as paranoid and delusional, grandiose, disorganized or confabulating. (BTW Confabulate does not mean lying, it means to unintentionally “fabricate imaginary experiences as compensation for loss of memory.” But whatever they thought I was confabulating I have not the faintest idea. Or memory. Alas, the chart says nothing of what I spoke about.)

What has completely upset the applecart is my own statement, written in my journal and elsewhere: “Why on earth would that guard care whether or not JCAHO was involved in that other hospital?” On that thought rests everything, because of course, he had to have cared mightily to have wanted to strangle me for it. Or did he? Did he care, and  in fact did he try to strangle me, and did he even say those words in my ear? I am serious.

 

You have to understand something: Once, years ago, I heard, or hallucinated, hospital nurses announce over the public address system in nearly the same words how they were going to “teach me a lesson” about — whatever it was I had done…and I knew I had heard it, knew I was hearing it at the time, except for the fact that I was on the phone with my sister at that time.  I held out the phone in the air so she could hear it too, but she told me she heard nothing, assured me that I was hallucinating. What I described was not only unlikely but so beyond the realm of the likely that she was certain  it could never have happened. “Its just your voices, Pammy,” she said, “you have to trust me, you are hallucinating.”

So remembering this, it gives me pause. For why would that guard care about JCAHO and that other hospital in the first or even the last place? What could it possibly mean to him? Security guards are usually hired from outside agencies so his over-involved concern with another hospital’s accreditation suddenly seems to me absurd.  And if he did not care, why would he have tried to strangle me? Oh, maybe he did hold me down too hard, and I felt that, yes. But if I could speak, then I know I could breathe, so I was not actually being strangled either.

Perhaps I was simply frightened? And could it be that in fact he never said anything at all? That I “imagined” those words, hallucinated them, and then continued to believe that I heard him say them and that he wanted to kill me, all the time since then? Could it possibly be that some of what the hospital personnel said was true — NOT all of it, but some part of it. That I was in fact hallucinating and delusional? It doesn’t make their behavior right. It doesn’t justify throwing me into seclusion and injecting me with IM meds when I was not a danger to myself or others. It doesn’t even make admitting me to the hospital the proper thing to do in the first place. But, but, but…if I have heard people say things, visible people say things that they simply have not said, when they have not said anything at all, and I know this has been the case, then it is, I admit, just possible that what happened at the ED this summer might be another instance of the same…It pains me to think this. It frightens me to think that I could have been so mistaken for so long.

But what’s more, I worry that I am wrong to believe I might be wrong!  That the guard DID say what I think he said, did intend to strangle me, and that I am giving him what he wanted: I am letting him drive me into believing I was/am crazy!

I do not know what to think. And I may never know for certain what happened. Not about this. However, one fact that I can corroborate in the record I am painfully aware I “knew” for months: I was given 3 IM drugs during that episode. Yet you only have to read my chart to see that I was given only 2: Geodon and Ativan. The third drug, Haldol, was canceled immediately after it was ordered. The records clearly state that only the Geodon and Ativan were ever administered. This is so striking an error of memory  that it too makes me think again about trusting what I was certain I heard in that terrifying room where they held me down and injected me.

 

I don’t know what to do with this…I don’t know how to handle it or deal with it. It doesn’t feel good, or give me any sense of relief. I dunno how I feel. Just shocked, I guess. And perturbed, because I don’t know what else I have experienced that never “really” happened.

Death penalty, Health, Health Care Reform, Mental Illness, Schizophrenia

Florida to execute paranoid schizophrenic tonight absent intervention from Supreme Court

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Florida to execute paranoid schizophrenic tonight absent intervention from Supreme Court.

 

Thanks to the excellent blog, Dispatches from the Underclass, we have the post above. It is disgusting but true that in some – too many states! – “we” are still executing the most severely mentally ill…

Health, Health Care Reform, Medication, Mental Health, Schizophrenia, Uncategorized

Psych Meds: Are We Crazy to Take Them?

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We are broken in so many ways. Here I am naked in the seclusion room in the left lens, and the right lens is broken over the biohazard sign, a symbol that stands for so many dangers…© All rights to this picture are reserved. Please contact me if you want to use it for any reason.

On Medscape yesterday they ran an article/video by a Dr Jeffrey Leiberman, lamenting the failure of three psychotropic drugs –one for the treatment of schizophrenia, and the others  for Alzheimer’s — to pass beyond either phase 3 or phase 2 clinical trials. This is part of what Leiberman had to say (please note that the emphasis is decidedly mine…)

 

“The brain is an organ that is orders of magnitude more complex than any other organ in the body. The brain has 100 billion cells. Each of the areas of the brain is organized cytoarchitecturally differently, and the cells connect via over 30 trillion synapses. Compare this to the heart, the liver, the gastrointestinal system, or the lungs, and there is no comparison in terms of complexity and intricacy. In addition, given the fact that we are developing treatments for brain disorders that affect mental function and behavior, the animal models that are an essential component of biomedical research and drug development are limited, because how can lower species like rodents model the complexity of human behaviors and mental disorders that we are trying to correct pharmacologically?

 

“In addition, the biomarkers we use to signal the effect of the treatment or prove the target engagement of a molecule at the desired location in the brain or protein in the brain are still in development and not fully validated. Thus, the complexity of the brain and the limitations of existing tools make the prospects of certainty in drug development [for brain disorders] more questionable than in other organ systems and disease areas. “Certainly the research community and the National Institutes of Health (NIH) understand the importance of redoubling our efforts to develop treatments for this important group of disorders. The NIH has recently established a new Institute, NCATS, or National Center for Advancing Translational Science, which has as part of its core mission drug discovery and development. In addition, various other Institutes have put out RFAs [request for applications]; this includes the National Institute of Mental Health, which has initiated a series of what are called the “fast programs” to identify drugs that exist within the pharmaceutical industry and may no longer be under development, but can be repurposed for study for specific disorders. A quick, rigorous study using a fast-fail strategy can determine whether these agents have the potential for further development.

 

“New efforts are coming from the biomedical research community as well as the NIH to spur drug development. I hope this will act as a catalyst for the pharmaceutical and biotech industries to not despair or back away from the risk of developing drugs in these areas, but rather to find the resources to support drug-development programs for these disorders.

 

 

“What is the benefit? Anyone who works with psychiatric patients knows that there are tremendous unmet clinical needs, whether in schizophrenia, depression, bipolar disorder, autism, or Alzheimer disease. With these needs come tremendous market potential, so for those who stay the course and persevere, there will be very lucrative rewards .To me, this seems like a great opportunity, and I think our partners in the private sector should appreciate this. I look forward to partnering with them to try and work in a way that uses their precious resources most efficiently but still serves our scientific goals and the needs of our patients. Thank you for listening.”

 

 

Yes, I noted the last statement, that he wants to serve science and his patients, but i could not help but feel great dismay at the other statements, including the first, that largely states what I already suspected: using animals to prove anything about human brain disorders or states of mind is downright ridiculous. All you can say about a rat’s “schizophrenia” is that it appears to  “behave” in some fashion that looks similar to someone who is psychotic…but how would you know if a rat is psychotic, or hallucinating or thinking in a delusional fashion?

 

Come on? How would you know if a rat had negative symptoms of schizophrenia, or was depressed, or simply felt lethargic because  it was hungry or drugged or sleepy or some other physiological reason. Well, you likely could not! Using animals that can not communicate with us to model human mental functioning is downright silly, and yet it seems to have only just occurred to Dr Leiberman, perhaps in his own disappointment with the glutamate-dampening anti-schizophrenia drug that just went bust…I dunno.

 

 

Once again, having read about how they are using Ketamine to treat 6-12 years olds with bipolar illness (mind you, I am not convinced that the children are actually Bipolar, only that more and more kids are being diagnosed because conveniently shrinks are allowed to drug them with Abilify and Seroquel and other adult antipsychotics and the drug companies push it on them, pay them for using it etc)

 

 

I believe that the use of psychoactive drugs and the rampant use of them is more often inappropriate than not. Truly.   The very idea that Abilify and Seroquel are prescribed willy nilly for everything from insomnia to mild anxiety is just plain SCARY. Has anyone out there taking these drugs even bothered to read the side effects, or do they no longer care what they are taking? Obesity no longer scares anyone, but what about diabetes and high blood pressure, nope, I guess not, since those are epidemic too.

 

 

It truly astounds me how both  those drugs, not to mention a whole host of other powerful drugs are being pushed on the American public, but we are a public that LOVES to take drugs rather than deal with problems by, well, looking at ourselves and thinking about what our responsibilites are and how we might change things…and doing some hard work and hard thinking about things…No, god forbid, why not just take a pill and forget about everything else, and if the pill doesn’t do anything, well, then, probably we are incurably ill and need to take those useless pills for the rest of our lives, because if we didn’t take them we might might might be even worse than we are taking them, right?

 

 

Not! Why do we take drugs that don’t help us, or that we do not notice any benefit from (though the shrinks are always willing to point out to us how much better “you are feeling”), drugs that might even make us feel worse in other ways.

 

 

Some people who are depressed lose all sexual enjoyment and functioning from their antidepressants, but refuse to stop the drugs because they are afraid…even though the drugs themselves make little difference in their mood, but their lack of sexual pleasure and responsiveness surely has…in a negative way. Why do they continue taking the pills? Hope? Obedience? Uncertainty? Perhaps all three…They may hope that if they take the antidepressant just a little longer, the side effects will “go away” as their doctor likely assured them, and they naturally want to be an aobedient and good patient, so they keep complying. And of course, depressed as they still are, uncertainty about the future plays a huge role, since how do they know that things wouldn’t get even worse, should they cease taking these pills that the doctor says not only will help them but somehow noticeably is helping them, whether they feel it or not.

 

 

Argh. I am reading a book, Rethinking Madness, by Paris Williams,  PhD. and it is a very interesting take on psychosis and the treatment of it. He suggests that it is NOT always a lifelong condition, or that one breakdown means that one needs to be on medication for life, or in fact that even with repeated psychotic episodes, one can be on intermittent medication and at low doses. I have difficulty reading, myself, so I have not read far along, but the first case study discussed a man who became psychotic suddenly in the late 60s or early 70s when he was threatened with the draft. After that he was ill for a long period of time, in and out of madness until he met the “right doctor” at age 28 or so. I believe it was then that he made the slow transition off all medication and since he was 35 or so has been off meds altogether. And has been well. Recovered, in every sense that matters, completely.

 

 

Everything about his history would today dictate that he never be taken off meds, and would mitigate against his ever dreaming of working in the mental health system, let alone as a worker in a state hospital. Yet this is where he has been employed for many years…(I may misremember some details, but that is the gist of it.) I could scarcely wrap my mind around such an outcome…it seemed that amazing.

 

 

Yet, I cannot be envious, because I know how often I tried to get off my medications, and because I did not know how, I likely induced a recrudescence of psychosis without even understanding that was what was happening. And naturally, they put me back on the drugs again…It was not my fault, just how it was in those days. I didn’t know, and they still don’t! Even now, though, I do not know if I could get off the meds.

 

 

But in my case, I am not sure I want to, largely because I function so well on them. I write, I do art, I sleep well, I am not obese, I have no chronic physical health problems because of them…So I have no pressing need to get off the antipsychotics, nor the anti-seizure meds, which I may need due to temporal lobe epilepsy anyhow. I would like to get off the sertraline, yes, and we are working on that. But why fix what ain’t broke at this particular time? I mean, I only got out of the danged hospital a month ago, and it would seem a little, er, crazy to fiddle with things this soon, much as I wish I could. On the other hand, I don’t mind taking these meds, because by and large, I believe, frankly, that my body has re-established some kind of homeostasis and has adapted to the lowered dopamine…so it has ramped up production to a different balance, meaning that I am fine where I am, but would risk a massive overload should I stop cold turkey.

 

 

OTOH, I do not yet understand the absolutely immediate improvement in all my mental capabilities when I take Zyprexa. Yes, I eat and eat and eat. But I can read and pay attention to people telling me things to movies and the TV and just “intake” in a way that I cannot now and have not in years…And it is literally within 2 doses. That cannot be a matter of homeostasis so what is it? Can Zyprexa be the ONLY drug that actually has some beneficial effects? I doubt it. So what is it?   Anyhow, any comments on these points would be appreciated. I don’t mind if you want to argue to the contrary, if you feel it strongly. I am here to hear different points of view as well. Though you know of course that I may “argue” with you back! All in friendship and good cheer.

Abuse, Health, Hospital, Life, Mental Health, Psychiatric Unit, Psychiatry, Schizophrenia, Trauma, Uncategorized

Mental Hospital: Psychiatric “Treatment” and Abuse II (Continued)

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I was admitted last Tuesday night, the 17th of July I believe it was, to the Institute of Living, the psychiatric division of Hartford Hospital in central Connecticut. I do not remember this. The fact that I have amnesia for it and for most of the Wednesday following only occurred to me on Thursday, a day and a half later, when I wondered — the train of thought must have had to do with the seclusion episode that took place Wednesday evening and which I described in yesterday’s blog post — why they had been so violent with me, why they had so quickly secluded and threatened me with restraints in a situation that didn’t come within miles of “requiring” them. Surely, I thought, the staff member who admitted me, whoever that had been, had asked me a critical question, which is on every  admissions questionnaire upon entering a psych unit or hospital these days: have you ever experienced trauma or sexual assault? (or words to that effect). I could not, and still cannot, for the life of my body or soul remember anything asked or answered at that time. There’s little left in my memory beyond a vague “snapshot” of being wheeled into The Institute of Living (hence forward to be called by its nickname The Toot or by its initials, The IOL) and my understanding that I had been transferred out of the ER. Then the memory  goes blank until many hours later. Understanding only as late as Thursday that I had this gap, and pained by the violence dealt me the night before, I went up to my “contact person” and asked about my admission. Could I find out whether this question was ever asked me, and what my answers were?  At first, naturally and as a matter of course, she refused. That was SOP. Refuse, refuse, and refuse.  So as I stood there, earnest in my request, she seemed about to summarily dismiss it as just another bothersome demand from a too-demanding patient already much disliked by all. What did I expect, cooperation? But to my surprise, her misgivings and the flicker of irritation that had crossed her face at first changed to a flattened look of resignation. She agreed to read my answers to the questions to me. But that was all she would do, so don’t go expecting more than that.

As she read from the top, a few memories stirred and woke, but only temporarily.  I fear they soon faded again into the all-white-out of oblivion. Only the trauma memories remain, for they apparently are stronger than thieving Ativan. Can I push myself to remember what her reading my answers back to me recalled to mind? She told me…what? She said that I told the admitting staff member, whom I do not remember a thing about, do not even recall if that person was male or female, doctor or nurse or what…I told that person I was not homicidal, not suicidal, not hearing voices, and that I didn’t need to be in the hospital. Three answers were true, or true enough by then. After having been nearly killed in the ER the people in my head/outside of it, who tell me to do things to myself were not so relentlessly horrible in their demands…so I was indeed no longer suicidal, homicidal or in need of hospitalization. I just wanted to get out of there and go on my upcoming writing-retreat vacation.

As I recall the little I recall now, this nurse, my “contact person” read to herself a lot of the paperwork and relatively little aloud, despite her promises. I kept asking what she had read, and prompting her to read out loud, but she let forth only a few phrases. I still do not know why… though I can guess that pretty bad things are written there about me. That would not surprise me one iota. I do not really care. They will largely be lies or descriptions of that awful scene in the ER from one very biassed point of view. No one will tell MY side of the story, that’s for damn sure. Whatever is said there will be based on what the ER personnel and the guard-thugs did to me, but if my contact person believed them reading them, and never bothered to find out the half of it, then who knows what they all thought about me, or believed…Anyhow, I do not care, because they too were thuggish, professionally and psychologically.

But the big question was yet unanswered. Had I ever in fact been asked about past experience of trauma or sexual assault? Contact Person, whom I won’t name as she was at least marginally decent to me, now seemed interested in this too, having paged through the lengthy document and not found it. She seemed puzzled, said she knew it was a standard question. She started perusing the thing again from the beginning. A minute or two later, she poked a page.

“Ah, here it is. And your answer is blank.”

“So the person just skipped over it. They just skipped it!”

“It appears so. Do you want to answer it now?” She took out her pen.

“Yes, and yes. I have experienced sexual assault three times. And severe trauma due to seclusion and restraints in many hospitals.” I looked at her. She was writing. “Tell me what you wrote.

“Experienced sexual assault. Has issues with seclusion and restraint.”

“NO! I said, it was severe trauma. I have PTSD, ask my doctor. Ask, I dunno, give me a test. I cry just talking about it. My heart rate goes up just thinking about it, even though it happened more than two years ago. It was trauma, and you cannot do it to me again!” She wrote something on the paper but didn’t read it to me. She just clicked her pen off and stood.

“Now you have your answer. I have things to do. Let’s go.” With that, and no discussion of what had taken place on Wednesday night, let alone in the ER, she hurried me out of the side office so she could go back to the nursing station to do some “real work.”

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I suppose there must have been some incidents of relative kindness at the Toot. There must have been exceptions to the Hartford Hospital IOL “coal dust standard.” But only Albert, a tech, stands out. Because they injected me with too much Ativan on Wednesday pm and I was discharged Friday noon, I had very little time between the ER’s monster dose and D3South’s equally large dose of Ativan-it-Away to retain much of anything but what stood out enough to stick, and really stick tight. Their puny kindnesses mostly did not, except for Albert.

On the other hand, the sheer meanness of the staff was astounding. I had a semi-meaningful interaction — though unpleasant  – in all that time with only one individual who was not programmed to speak with me. And even that started out with nastiness, though I admit it was sparked by something that was “my fault,” as you will see.

Friday morning I needed migraine meds and my 8am pills. I went to desk at 7:55 and asked for them. A nurse or tech or someone –I never knew and no one ever bothered to tell me who or what they were — lingering at the desk said that the med nurse somewhere in the back would get them. I wandered off, figuring it would take some time and she would bring them to me, which is what they did at every single place I have ever been. But no, by the time I thought about it again, realizing that she had never brought them, it was 8:45 and people were lined up for their 9:00am meds already. I signaled above them to the nurse at the med window that I had not gotten mine for 8:00am yet. She told me that of course not: I left the med station; why should she go after me? Then she indicated that I should get in line to be next…even though that meant stepping in front of someone else. Okay, so I got in line, and  – oh, I do not remember all that happened except that I became angrier and angrier with her, resenting her attitude. As a consequence, I did everything I could do to irritate her. She poured the meds at the computer, where I couldn’t see them, saying their names softly to herself so I asked to see the packaging. I didn’t trust her not to withhold or add something I didn’t want. Because I had asked for Imitex an hour before I sensed she would not include it. Well, lo and behold: No Imitrex! So I took the pills, but asked her for the Imitrex as well.

Ah, revenge time! “I will get the Imitrex at 9:00 am sharp, when it is due. That is 10 minutes from now. You can come back and wait in line then.” I just stood there, not budging. I would never stoop so low as to impugn a person’s person, but I probably let loose a few curses and most certainly raised my already angry voice a few decibels. Finally, speaking in a calm, respectful voice, a man whose name I learned was Albert came up to me asking in such a polite manner that I even looked him in the eye, to “please just lower your voice” so he could hear me tell him what the problem was.” Well, treated in such a fashion I understood he would wait for me to calm and not get angry back so I was able to take a few breaths and then make him understand what she was doing…He said, with the med nurse standing well within earshot, though I do not think he intended any manipulation, “It’s okay, don’t worry. It’s nearly nine, and I’m sure the med nurse will get your medication for you.” (I was sure of quite the opposite but harrumph! Well, what could that SOB, excuse me, DOS — daughter of a stud (med-nurse) do but give me the Imitrex now?) I might have crowed, but instead, thanks to Albert and in respect for him, I took it without a fuss and thanked him again.

This sort of treatment gives the lie to what so many providers – both individuals and insitutions — say about the goal of “empowering patients.” What bloviated BS! What they really want are not empowered patients but cowering patients, people too scared and drugged up to object or make trouble in the first place and then who continue to cower before the establishment MD’s power structures all the way to the last place.

 

My butt hurts from sitting slouched on a bed all day. I need a break. So I am going to post this and go outside in the cooling darkness of the Litchfield hills and drink the air. Since I have nothing I have to do here but write, I will post tomorrow about that single meaningful encounter I had while imprisoned at The Institute of Living. If I still feel it is worth writing about, which as I think about it, it may not be.

Oh, what the heck: Basically, it concerned an encounter with this female tech, a woman who in passing me in the hallway, the first time she had spoken to me so far as I knew, accused me of moral turpitude (not in those words), made a statement shaming me for my behavior on Friday morning at the medication window. What had I done?  By talking too loudly, I had made “the poor man behind [me]” cover his ears and point at his skull to communicate his displeasure. PLUS, I had made everyone wait a good 30 minutes…I knew the 30 minutes was an exaggeration, so I didn’t even touch that, but the shaming tactic got to me. I went back a few minutes later and said I wanted to speak with her. We went to a couple of lounge chairs in the hall and sat down.

“What precisely did I do that was morally wrong this morning?”

“Do you know you talked so loudly this morning that the poor little man behind you was covering his ears and pointing at his head?”

“So I should have talked more softly, but I do not have eyes in the  back of my head to see him. I could not know he was communicating by pointing at his head. It is not morally wrong not to have eyes in the back of your head, nor is it morally wrong to speak in a loud voice.”

She reiterated the case of “the poor little man behind you pointing at his head.” But I continued to press her on what was morally wrong because I didn’t have eyes to see behind me. Finally she granted that I could not help not seeing him and that it wasn’t actually a morally wrong thing to do, to yell or talk too loudly. At this point I said to her, nearly in tears because just having a calm conversation had taken such effort on my part, “Be careful what you say to someone on this unit you know nothing about. Words have power and you should use that power with care. You have NO idea how those words you spoke affected me, no possible idea…”

She gave me an intent look, almost a fearful one, as if afraid that — well, no, I don’t think she gave a damn whether or not she caused me any emotional harm. She no doubt despised me along with the rest of the nursing staff. But perhaps she suddenly appreciated how even her words were important and powerful, and carried weight and could do some good but could also do just as much psychological damage and maybe more sometimes than the loud voice that damaged mostly ear drums.

 

 

 

Health, Schizophrenia, Uncategorized

When is Schizophrenia not Schizophrenia? To Be or Not to Be…

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Rossa Forbes wrote a fascinating article at the Mad in America website  —  see my permanent link — about her son’s schizophrenia diagnosis and his on-going recovery from treatment.  One thing among many struck me. She freely admits that when she learned his diagnosis, one of her reactions was to treat her son as if he were feebleminded. Not all the time, but you know how it is when someone seems out of touch or  unreachable, it isn’t difficult  to feel that maybe she or he really has lost a major portion of intellectual capacity…

But I don’t want to paraphrase, so rather than copy and paste Forbes’ piece here, I would prefer to link to it so you can read it for yourselves. While you are there, check out some of the other Mad in America stories by clicking on the Home button. Mad In America is an incredibly interesting website, and an important one. It has changed my thinking, encouraging me to continue my own investigations, pursuing thoughts that no one has ever before “permitted me.” Sometimes this feels scary even to me, dangerous too. Breaking one’s chains and shaking them off can indeed feel scary, no matter how badly one wants freedom. The only cure for it is to take the first step forward unshackled, breathing freely.

http://www.madinamerica.com/2012/06/holistic-recovery-from-schizophrenia-a-mother-and-sons-journey/

Already I have cut out one of my chains, my medications — lamotrigine–  without detrimental effect so far.  It has been a week and the one thing I was scared of, a return of the olfactory hallucinations, has not happened. I think I worried for nothing.  I still take another anticonvulsant, so as I suspected, the lamotrigine was probably overkill. Why was I on it in the first place? I do know that I never needed lamotrigine as a “mood stabilizer.” As I recall, some doctor switched me to it from valproic acid or carbamazepine which I was taking initially for the hallucinations, caused by temporal lobe seizures. He thought I was taking an anticonvulsant for mood stabilization, and never consulted me, and so from then on it was simply assumed by all the hospital personnel that lamotrigine was primarily a mood stabilizer…

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I am wondering about my post title. I chose it thinking about Mad in America and Rossa’s Op-Ed. And yet, she did not necessarily disavow the diagnosis, just the medical model and the treatment. At least that is how it appears, since the title of her book-to-be uses the word schizophrenia…I myself would prefer throw that baby out with the bathwater and reconsider the whole affair. Instead of trying to resuscitate a lifeless baby, perhaps we should recognize that the plastic baby doll was always lifeless, and start casting about for something real. What I mean by that is, maybe there is absolutely nothing to the notion of schizophrenia. Is it possible that we all believe there is something there, when there is nothing, nothing at all? Am I crazy to say this? I do not deny suffering. I do not deny that I myself experience phenomena and feel things and hear things and suffer. And I certainly do not deny that others feel and hear and see and experience things. They certainly have their experiences. But, and this is the heart of the matter: Just because we have these experiences, does that mean they constitute a construct, a real thing, an entity, an illness per se? Why? Why can I not have these experiences by themselves without them having to be something, without them having to be an it?

I am serious. If we did not make all these experiences into something, if we did not scoop up each little experience and mash them all into one big Thing and wrap it up and label it bad, bad, bad, and then hand ourselves over to the psychiatrists to diagnose and treat and to Big Pharma to medicate, not to mention Big Insur to rob us blind for doing nothing, if we did not allow all of that to happen because we decided that our experiences were valid experiences, not invalid and sick, but honest and real experiences that needed to be honored, taken seriously, not scorned or contemned, what would happen?

Wow, I wonder. I wonder.

Health, Health Care Reform, Medication, Mental Health, Politics, Schizophrenia, Uncategorized

Involuntary Outpatient Commitment or Assisted Outpatient Treatment: Kendra’s Law

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Please note that this post, while distinctly against such excuses for treatment as Involuntary Outpatient Commitment, AOT or anything like it, it intends no disrespect for unfortunate victims of crime like Kendra and others for whom these eponymous laws have been named.

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This afternoon, I testified against a bill raised in the Connecticut judiciary committee, which proposed Involuntary Outpatient Commitment. The provisions of this bill were so egregious, so outrageously discriminatory against those of us with psychiatric illnesses, and carried such potential to cause more harm and trauma than treatment, that despite my grief and exhaustion, I felt I had to write something for the judiciary members to read, and then to cut it down to a 3 minute oral presentation to read before them today…

First of all, let me recap the worse provisions of the bill, rather than making you read the whole thing (Though it is actually a revision of a bill, and so is not long, a paraphrase is always easier on the eyes, so to speak.) First of all, instead of the two psychiatrists needed to commit a person to the inpatient stay of 15 days observation — a PEC or physician’s emergency certificate, which is the first step of any inpatient stay — an outpatient commitment requires only a single psychiatric opinion, and the doctor need have one year’s post medical school experience to be considered competent enough to evaluate any patient for such purposes. Not only that, but he or she can evaluate a patient at much at 10 days before the hearing and that would suffice as valid, even though everyone knows much can change in 10 days. After all, people are admitted to hospitals inpatient these days and are expected to be discharged within 2-5 days on average, at least in Connecticut. Then, the next outrage against a psychiatric patient’s civil rights is that the treatment providers will be permitted to speak to ANY family member or anyone who knows the patient well, about the patient’s issues and treatment history. No matter that the provider may not know anything about this family or these friends, nor what their relationship with the patient is like!

Worst of all, get this: Once a conservator is assigned, and forced medication is arranged, the police or ambulance may be called and the patient transported to a location where he or she will be forcibly medicated against their will, i.e. restrained if necessary and injected in the buttocks (“dignity preserved” hah!) most likely with some depot drug like Prolixin or depot Risperdal that, no matter how horrible the side effects are, will remain in the patient for a long time.

Despite this, the provision remains that this can remain in effect at most 120 days. Go figger. You can forcibly medicate a person for 4 months, and presumably (I doubt it) get them well for that long by brutalizing them. But after that, they can do as they wish, which likely will be to NOT take the humiliating injections or the medication by mouth either. So what was the point? Usually, a person will take a drug that makes them feel better, barring painful side effects. So if the drug is rejected, 75% of the time it has been shown to be because of intolerable side effects or simply because the drug doesn’t work….So what good is IOC then?

So, in response to this proposed — well it is outrageous, ill-conceived, unjust, and just plain stupid… I wrote the next 2 pieces. The first is my oral testimony, which I cut out and edited from the second, my longer written testimony, which I had to leave with the judiciary committee as it went on much longer than the 3 minutes oral testimony time each person was allotted. Also, when I wrote the written testimony, I had not been aware that there was actually a proposal to physically restrain and inject an outpatient. So there are those differences between the oral and the written forms of testimony. Both were extraordinarily difficult to write and to read as you will see, and will no doubt understand why, especially if you are a long time reader and remember all that I have written about the traumas I have experienced at two hospitals in CT that begin with M…

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Oral Testimony before the judiciary committee

March 29, 2012

Opposing sb No. 452

an act concerning the care and treatment of persons with psychiatric disabilities

Good  Afternoon, members of the Judiciary Committee.  My name is Pamela Spiro Wagner. I am a lifelong resident of Connecticut, currently living in a suburb of Hartford. As a Brown University graduate, elected to Phi Beta Kappa in 1975, I  attended ____ Medical School until psychiatric difficulties, later diagnosed at schizophrenia, forced me to leave. In 2005, I co-authored  the memoir, Divided Minds: Twin Sisters and their Journey through Schizophrenia, which was a finalist for the CT book award. I also wrote a book of poems, published in 2009.  As a visual artist, my work has been exhibited in Norwich, Hartford, Wethersfield and on the internet. I am here today to oppose SB 452, an act concerning the care and treatment of persons with psychiatric disabilities. This bill  proposes to introduce involuntary outpatient commitment to CT.

Involuntary treatment doesn’t work, period; it usually causes more harm than good.

In 2009,  deemed psychotic and dangerous to self, I was hospitalized against my will at Manchester Hospital.  Instead of my usual medications, I was given  Zyprexa, which has severe side effects. I refused it and decompensated. The psychiatrist decided a judge would force me to take Trilafon, a drug that made me miserable. If I refused I would get  an injection of Haldol in the buttocks.

Nonetheless, I refused. I also refused to take down my pants for a needle full of Haldol, so I fought them when they approached. After a few such encounters they started calling a code — “Dr Strong” — to bring in the security team of men and women who invariably assaulted, subdued, then stripped my clothing off, restrained and injected me, despite my terrified screaming and fighting. These confrontations along with liberal use of 4-point restraints to shackle me to the bed, or solitary confinement in a locked and freezing seclusion room without even a mat on the floor, happened so often that I literally lost track of time. As a result of these traumas I now suffer from PTSD.

This is what involuntary treatment leads to. According to SB 452 , police could be called to transport a patient to a location where she could be restrained and forcibly injected. That is inhumane. Involuntary Outpatient Commitment is just coercion and brutality masquerading as help.  This is not how Connecticut should be delivering its mental health care.

Thank you for your time and attention.  I would be more than happy to answer questions.

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Note: I wrote this before I learned that the SB 452 bill actually proposes to permit the involuntary transportation and forcible restraint and injection of an OUTpatient…

Written Testimony before the judiciary committee

March 29, 2012

Opposing sb No. 452

an act concerning the care and treatment of persons with psychiatric disabilities

Good morning members of the Judiciary Committee. My name is Pamela Spiro Wagner. I am a lifelong resident of Connecticut, currently living in a suburb of Hartford . As a Brown University graduate, elected to Phi Beta Kappa in 1975, I  attended  _____Medical School until psychiatric difficulties, later diagnosed at schizophrenia, forced me to leave. In 2005, I co-authored  the memoir, Divided Minds: Twin Sisters and their Journey through Schizophrenia, which was a finalist for the Connecticut book award. I also wrote a book of poems, published in 2009.  As a visual artist, my work has been exhibited in Norwich, Hartford, Wethersfield and on the internet. I am here today to oppose SB 452, an act concerning the care and treatment of persons with psychiatric disabilities. This bill  proposes to introduce involuntary outpatient commitment to CT.

Involuntary treatment does not work.  Over the short run, you can make a person take medication (which is what this is all about). You can threaten to hospitalize her “or else” and frighten her into swallowing a pill for a while. And you can medicate her forcibly if she ends up in an inpatient setting.  You can do so despite the horrendous side effects she may experience – from intolerable sedation or enormous weight gain and diabetes to the agonizing restlessness known as akathisia, the potential development of a disfiguring movement disorder like tardive dyskinesia, or just seemingly minor problems such as increased dental caries resulting from a chronically dry mouth. Not to mention a score of other severe side effects I haven’t even mentioned.  It may be that in the short run, the patient will break down in the face of such measures and begin to accept treatment “voluntarily” – or seem to. Perhaps she may even seem to “get better.” But I am here to tell you that despite appearances of success, involuntary treatment is the worst possible thing you can do to a person with a chronic psychiatric condition. Symptom improvement is usually temporary.  For any number of reasons, as soon as you cease forcing a person to take pills, she is more than likely to stop taking them, especially if side effects are objectionable or coercion a major factor in her decision to take them in the first place. If she has been treated against her will, either as an in-patient or in an outpatient setting, the effects of the trauma involved  may be permanent. I know, because I have been there.

Although I am in outpatient therapy, I have not always been and am not now always compliant with medications, especially those that make me feel deadened or bad, even when they seem to alleviate the worst of my symptoms. If a medication makes me feel horrible or worse, makes me feel nothing inside, I usually refuse to take it. I tend to agree with those who say that sometimes the treatment can be worse than the disease. Still, while in-patient, I have  often been subjected to “forced medication hearings,” which I lost, the deck being inevitably stacked against me. In 2004, at the Hospital of St Raphael’s in New Haven, I was not only forced to take Zyprexa, a drug that induces severe obesity, high cholesterol and diabetes, but in addition, the probate judge, on the instigation of the in-patient psychiatrist, ordered that I undergo involuntary ECT, otherwise known as electro-shock treatments. All of this was in the name of  “helping me.” No matter that I did not want it, nor that my neurologist was completely against it, fearing brain damage. Nothing mattered but the wishes of that one psychiatrist. That single psychiatrist, whose word and opinions counted far more than anyone’s though she had known me all of 3 weeks.

One of my most recent experiences with involuntary treatment was at Manchester Hospital. This was so horrendous that in combination with an even more brutal experience, 6 months later, at Middlesex Hospital in Middletown, I developed PTSD, posttraumatic stress disorder. Because Middlesex Hospital has already been investigated and cited by the Office of Protection and Advocacy and the Department of Public Health for improper use of restraints and seclusion because of what they did to me, I would like to tell you about the Manchester Hospital experience, as I believe it will give you a better “taste” of where Involuntary Outpatient Commitment, when taken to its logical conclusion, can and must lead.

I was  hospitalized against my will at Manchester Hospital in 2009 on a 15-day physicians emergency certificate (PEC).  In the first few days there, I was summarily taken off the two-antipsychotic drug combination, plus the anti-seizure meds and an anti-depressant I came in on. This  “cocktail” had worked for me since 2007 without side effects so it was one that I was willing to take. I also felt it helped me function better than I had in years. The psychiatrist at this hospital decided, however, that “since you are here, your current meds aren’t working, so I am going to put you on something else.” Did it matter to him that I had already been tried on nearly every other antipsychotic drug on the market, old and new, and none worked as well and with as few side effects as the two I had been taking? No, he was the doctor and he knew better than I what was what. Moreover, whatever he said became law.

So the “offending meds” were removed and I was again told I had to take Zyprexa, a drug that I hated because of the severe side effects. Over the next few days, I continued to refuse it, and naturally, I decompensated further, especially since by then I was taking no antipsychotics at all. A hearing with the judge was scheduled and the psychiatrist decided at the very last minute that they would force me to take one of the oldest neuroleptics in the PDR, Trilafon, a medication he had no reason to believe worked for me. Had he asked I would have readily explained to him it made me exquisitely miserable, even at the lowest dose. Instead, he said only that if I refused it, I would be given an IM injection of Haldol in the buttocks –as punishment. Or so I felt.

It may seem that I am making unfounded statements about this psychiatrist’s intentions, but think about it: when one is told that the “consequences” of refusing to take a pill will be an injection of another awful drug, how else is one to “read” it but as a threat of punishment? How would YOU read it?

Well, I was not going to take Trilafon, not when I knew how horrible the side effects were that I would suffer as a result. So I refused the pills. I also refused to lower my pants for a needle full of Haldol, so I fought them when they approached. After a few such encounters they started calling a code — “Dr Strong” — to bring in the security team of men and women who invariably assaulted, subdued, then stripped my clothing off, restrained and injected me, despite my terrified screaming and fighting. These confrontations along with liberal use of 4-point restraints to shackle me to the bed, or solitary confinement in a locked and freezing seclusion room without so much as a mat on the floor, happened so often that I literally lost track of time. As a result of these traumas I now suffer from PTSD.

Why do I tell you this? Because this is what forced medication and involuntary treatment can lead to much more often than you want to believe. If sb 452 passes and Involuntary Outpatient Commitment is instituted, how do you propose to treat someone who does not want outpatient treatment? You cannot assault an outpatient and brutally medicate them using 4-point restraints and IM injections. All you can do is bully and threaten. Involuntary Outpatient Commitment only serves to re- traumatize those with psychiatric disorders.  In my opinion it is just coercion and cruelty masquerading as treatment. But it won’t help anyone.  It will only drive the would-be consumer as far away from so-called  “treatment” as they can get. This is not how Connecticut should be delivering its mental health care.

Thank you for your time and attention to this matter.

Mental Health, Schizophrenia, Trauma, Violence

In-Patient Psychiatric Abuse Can Be Subtle (and not so)

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I will be rewriting this for my new memoir, but wanted to try out the episode here, in part, though I have not yet rewritten it…I have been rereading my many journals that I have retrieved from storage in preparation for really seriously writing this thing, and it was one of the first events recorded that I happened to dip into. It is in a relatively recent journal, but I was reading randomly and I just happened upon it. It very much upset me, as just as I read it, I remembered it very clearly. I had no amnesia, it was only that I have been in so many hospitals in the past 3 decades that I cannot separate out one from another, nor tell what happened where or when.

Subtle abuse? In fact, I don’t know that the episode I relate here is an example of subtle anything. I can only say that at the time I had no idea that it was abusive. I felt that perhaps I deserved it.  I had no idea that it should have been reported, that someone should have defended me, that anyone…Well, you will get the drift upon reading the following brief description of one incident, among the way-too-many that have happened to me over the past 5-10 years in Connecticut hospitals. All I can be sure of is that if hospital staff do these things to me, I am fairly certain that they must do them to others…In which case, that Hartford Courant article in 1998, “Deadly Restraints” which was supposed to have changed everything both in Connecticut and around the country in terms of in-patient treatment of the mentally ill, that article did little to nothing. I would say, in fact, that treatment has gotten markedly worse over the decade. Compared to my treatment in the two decades before this past one, I was never abused as much in the 80s and 90s as I have been since Y2K and 2000.

For once, what I write of here does not involve restraints per se, at least not immediately, but as you will see it involves abuse, physical abuse, just the same. I have transcribed this from my journal from a few years ago. I have edited it, but most of the edits I made were for clarity or to convert partial sentences to full ones, though in a couple of places I had to flesh things out more. But here ’tis, what happened to me at a general hospital I spent a fair amount of time in, in Fairfield County, where my twin lives:

“After a run-in with Karen again, I apologized and we had a decent talk. I took off my coat for once, went to Wendy’s communication group and did okay. Then I was sitting in the alcove talking with Mark about my dread at every anniversary of JFK’s assassination when a hullabaloo started near room 306 at the other end of the hall. It seems a woman was having a heart attack. I immediately felt the floor fall beneath me: I was to blame, my inattentiveness, my raucous, hyena laughter, my evil had killed her!

I knew that I needed to take my 4 o’clock medication for what little it would do, but no one called to announce them or for me to take them. My ears rang, booming! The air was full of blaming and criticizing voices, so maybe I didn’t hear, but I think they just didn’t call me. I rang the intercom buzzer at 6:45 and was told that Jamie, the medication nurse that night, would be back from supper around 7 o’clock. I rang back at 7:05 but he was still gone, so I waited another 15 minutes since no one told me that he had returned.Finally at 7:20 I pushed the intercom button to ask if I was supposed to skip all my 4 o’clock and 6 o’clock medications. They now said Jamie was waiting for me. But why hadn’t he called to let me know he’d gotten back from dinner? Slowly I managed to shuffle up to the medication door again, zipped to the mouth in my coat and balaclava hood, verging on stuckness, only to find there was no Geodon in my cup.

“So I don’t get my 4 PM medications,” I whispered in stunned panic, too afraid to simply ask for it.

“Nope” was Jamie’s only answer.

I was flabbergasted, completely stunned. My second prescribed dose of BID Geodon was what I’d been waiting patiently for ever since the patient in room 306 had her heart attack. After Jamie ignored me, giving me no explanation, I just turned, took my 6pm Ritalin, then dropped the DIxie cup of water and all the other pills on the carpet. In a daze, it took everything in me to start making my way down the hall towards my room again.

Then I heard footsteps pounding up behind me and suddenly Jamie was in front of me, blocking my way. “You’ll go back there and clean up the mess you made right this instant!” he bellowed and pushed me towards the med station. I stared through him, tried to walk away, but he blocked me again and again pushed me backwards until finally I gave in, relaxed and let myself succumb to his pushing. I didn’t walk though, I merely fell backwards to the floor, saved from injury only because he grabbed the front of my coat as I fell, and lowered me to the floor. I curled up in a ball like a porcupine, hoping not to be killed. Well, he was in a rage and forced my hands down, away from my shoulders, and unzipped my coat. Then he ordered me to get up and clean up the mess again — what mess really? A few pills on the floor, and a little water that would dry? I refused. I curled up on my side and closed my eyes, responding to nothing. He threatened me with restraints. At that, I gave up resisting, knowing resistance would give him the excuse he wanted. I let him pull my coat off my limp body. And I remained limp as he carried me to my bedroom where he dumped me coatless on the bed and thundered away. I was triumphant, however. No restraints! I’d figured it out. If you refuse to resist, if you don’t fight back against their power plays, they have no excuse to justify putting you in restraints. They cannot put someone who is completely silent and limp into 4-point restraints. What would be the point?

Nevertheless,  I was cold and felt exposed in only my T-shirt and jeans, and with no coat to protect me, nor others from me. So I got up and grabbed a sweater and started bundling myself into hat and  hooded scarf. Suddenly Jamie barged in again. I backed away and fell onto the bed behind me. In a fury that was unbelievable to me, he leapt onto the bed and pinned me down, knelt so his knees trapped me and I couldn’t move. Then he unbuttoned my sweater and tore it off me, ripped off my hat and scarf, then without a word proceeded to empty the room of any clothing that could possibly cover me, including my shoes.

This was too much to bear. But I said and did nothing in protest. How could I? I had no words, no sense that I had rights of any sort. All I did was huddle against the wall under a blanket and whimper, “I didn’t mean to kill her. I didn’t mean to cause a problem.” Jamie, who had left with all my things, stormed back in and angrily lectured me on how I was guilty of  “just wanting attention!” I wept silently. All I’d wanted that entire afternoon had been my 4:00 pm medication, and to be left alone to deal with repercussions of having killed the  patient in 306. I was too stunned to respond and could only whimper over and over, “didn’t mean to kill her, didn’t mean to cause a problem.” Still furious, but getting nothing from me and spent, Jamie finally left for good.  After a while, I looked around at the nearly empty room, and there on the night table was the pen Lynnie had left behind that afternoon. Jamie had overlooked it in his rampage. I had no energy to get off the floor, and no paper to write on, so I did the only thing I could, and  I began writing on the wall. “I didn’t mean to kill her, didn’t mean to cause a problem,”  I wrote and wrote. I wrote until I physically could not write any longer, I wrote until my hand gave out.

That was not the end of the evening, but it was the end of the interchange with Jamie, RN and it’s all I wanted to go into for tonight as it is getting late, very late and I needs must go to sleep.

Blog, Schizophrenia, schizophrenia.com

Original WAGblog is back!

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So

Hey everyone, I just found out that the original Wagblog at schhizophrenia.com is available. I started that blog in 2003 and in 2008 there was a server accident in which it seemed that my entire blog had been lost. I just happened a minute ago to try looking for it, and lo and behold it seems to be back. If you are interested in all my posts, from the original site, go below.

Good luck. I think this link will get you there. (I am writing this on my ipad so all of this is new to me. I hope that the program works here as well  as on a computer.) I think it will work now, but if not, try putting the address in manually until I get to a computer to do it properly.

http://www.schizophrenia.com/pam/

Blog, Health, Mental Illness, Psychiatry, Reflection, Schizophrenia, Writing

Shock Treatment (ECT) in 2004

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(Edited in 3/2012 . Note that all names have been changed back to their originals except for names of the people involved. Although in Divided Minds, we were forced by the publishers to disguise everyone, including the hospitals, here descriptions of people once  changed to “protect them” have been undisguised. I write nothing but the truth as I remember it — I wrote a fair amount in my journals at the time and I referred back to my notes there in writing this — and I intend no libel in any event. In fact, I want to be as fair as possible and to bend over backwards in giving as much credit where it is due as possible.

Note, because many may have read this before, I want to

I hope this will be a chapter in BLACKLIGHT, my second memoir and a possible sequel as it were to DIVIDED MINDS.

The Ogre Has ECT: 2004

I am delivered like a piece of mail to the Hospital of St Raphael’s, on a stretcher, bound up in brown wool blankets like a padded envelope. It’s the only way the ambulance will transfer me between Norwalk Hospital and this one. The attendants disgorge me into a single room where de-cocooned, I climb down and sit on the bed. All my bags have been left at the nurses’ station for searching; this is standard procedure but I hope they don’t confiscate too much. An aide follows me in to take my BP and pulse, and bustles out, telling me someone will be back shortly. I sit quietly for a half an hour, listening to the constant complaint of the voices, which never leave me, sometimes entertaining me, most of the time ranting and carping and demanding. A thin, 30-something woman with curly blonde hair, residual acne scars that give her a kind of “I’ve suffered too” look of understanding, and rimless glasses knocks on the door-frame..

“May I come in?” she asks politely.

“I can’t stop you.” My usual. Don’t want to seem too obliging or cooperative at first.

“Well, I do need to take a history, but I can come back when you’re feeling more disposed…”

“Nah, might as well get it over with.” Then, nicer, I explain, “I was just being ornery on principle.”

“What principle is that?”

“If you’re ornery they won’t see you sweat.”

“Aah…”

“And they won’t expect you to be medication-compliant right off the bat.” I shrug my shoulders but grin, I want to think, devilishly.

“I see you have a sense of humor.”

“You should see me…”

“I’m sure we all will. A sense of humor is very healthy. But it worries me that you already plan not to take your meds.”

“I’ll only refuse the antipsychotic. Look at the blimp it’s turned me into.” I haul my extra-large tee-shirt away from my chest to demonstrate. Fatso, Lardass! Someone snipes. She doesn’t know it but you really believe you’re thin. Ha ha, you’re a house! Look at yourself! LOOK at yourself! Ha ha ha ha! The voices are telling the truth: I know the number of pounds I weigh is high, outrageously high for me, having been thin all my life, but I haven’t lost my self-image as a skinny shrimp, so I can’t get used to being what others see. The voices love to remind me how fat I really am. Only the mirror, or better, a photograph, reminds me of the honest to god truth, and I avoid those. I avert my eyes, or search the concrete for fossils, when approaching a glass door. Anything not to be shocked by what I’ve become. Pig! Glutton! It seems they don’t want to stop tonight…

I realize suddenly that I’ve lost track of the conversation.

“I don’t think they’ll allow you to do that for long.”

“Do what?”

“Don’t you remember what we were talking about? Were your voices distracting you?”

“Just thoughts, you know, plus some added insults.”

“You’ll have to take all your meds eventually.”

“Then they’ll have to switch me to a different pill, even if it’s less effective.”

She sucks the top of her pen and looked down at her clipboard. “So,” she starts the formal intake. “What brings you here to St Raphael’s?”

The voices break in there, again, confusing me. When I can get my bearings I tell her what made me transfer from Norwalk Hospital and why I opted for shock treatments. She takes a closer look at the mark of Cain I’ve burned into my forehead, writes something, then corrects me.

“We like to refer to them as ECT here. ‘Shock treatments’ brings to mind  the terrible procedures of the past. These days you feel nothing, you just go to sleep and wake up gently. I know. I assist at the ECT clinic.

“Oh, I know, I know. I’ve had ECT before. I know what it’s like and it’s a snap. I asked for this transfer because I hope it will help again.”

We talk some more about why I’m here and what I’ve been through and the voices keep to a minimum so there’s not too much interference. She says she’s going to be my primary nurse and that she thinks we’ll work well together. I nod, thinking she’s pretty okay, for a nurse.

I’ve arrived after lunch, which is served at 11:30am so someone brings me a tray and I pick at it in my room. People come in and out of my room but only speak to me a second or two before they leave, a doctor does a cursory physical, someone takes me down the hall to weigh and measure me. I return to my room, too scared to do otherwise, constrained by the Rules of the voices. The first break in the afternoon is medications in the late afternoon, when someone tells me to line up in front of a little window near the nurse’s station. When it’s my turn, I look at the pills in my cup. Ugh, 20mg of Zyprexa, an increase, plus a host of other pills I can’t remember the names of. I hand the pill back to the med nurse. I’m not taking this, it makes me fat, I say. Give me Geodon. at least I don’t put on weight with Geodon.

“Sorry, Dr Corner has ordered this one. We can’t just go around changing doctor’s orders. You either take it or you refuse.”

I was in a quandary. I hadn’t even met the doctor and already I was fighting with her? Should I take it and argue with her later? But then I’ll eat my whole dinner tray and more. Better to start off with my principles intact, so she knows what I’ll take and what I won’t take. I hand the pill back. ”Sorry, I won’t take it.”

“If you decompensate further we will have to give you a shot, you know that, don’t you?”

“I’ll be fine.” I do a little dance step.

“Yeah, and look what you’ve done to your face. Come closer.”

Wondering what she wants, I lean in gingerly, fearing her touch, but she only takes a tongue depressor and smears some ointment on the big oozing sore.

“You’re done.Go eat some supper.”

At 4:30? That’s pretty early. I can’t cross the threshold of the dining room, the Rules the voices make forbid it. I cannot enter the milling crowd, suffering little electric shocks every time my body makes contact with another’s. Instead I retreat to my room. Sitting on the edge of my bed again, I wonder what to do. How can I get supper, or any meal, if the voices won’t let me go into the dining room?

Just then, the thin blonde nurse with the glasses, what’s her name, leans into my room. “Aren’t you hungry? There’s a tray for you waiting outside the dining room.”

“They made a rule I can’t eat with other people, and I can’t get in the dining room…So I can’t eat.” I read her name tag. “Prisca.”

She smiles and glances down at the tag on her chest.  ”Oh, just call me Prissy, everyone else does. I hate it, but what can you do? What are you talking about? There’s no such rule. For now, I guess I’ll let you eat in your room, but that  is against the rules and we’ll have to get you into the dining room eventually, whatever the voices tell you.

She brings in the tray: white bread with two slices of bologna and a slice of cheese tossed on top, a packet of mayonnaise, a small green salad in a separate bowl, with a plastic slip of French dressing, and a packaged Hostess brownie for dessert. I didn’t eat lunch, though they brought it in, so even this impoverished repast looks good to me and I eat everything, despite not having taking the hated Zyprexa. I curse myself for it, of course, and do some  leg lifts and crunches for exercise afterwards. Ever since I’ve been refusing the drug, I have lost weight. Now I am down to 155 lbs from 170 the last time I weighed myself and I intend to get much thinner, since I started at 95 before medications over the years slowly put weight on me.

After supper the voices start in again, louder and louder, telling me how fat I am, how disgusting and terrible I am. I notice the clock hanging on the wall, which ticks audibly punctuating each sentence. The voices were carping, now they are threatening, and demanding…Finally, their all too familiar sequence segues into telling me I’m the most evil thing, and they don’t say person, on the planet. I’m the Ogre that ate Manhattan, I’m Satan, I’m a mass murderer, I killed Kennedy and deserve to die, die, die!

I’m wearing a heavy pair of clogs with wooden soles and almost before I can think about it, I know what to do. I heave one up at the clock, hitting it dead center. It crashes to the floor. Scrambling to grab a shard of the clear plastic cover before the staff comes running in, I lunge towards where I saw the largest piece fall, one with a long jagged point. I have my hand closed around it when someone tackles me from behind. He’s not very big and I can feel him struggling to keep me pinned. I almost succeed in stabbing myself, but he manages to engulf my hand with his two and press them closed against the flat sides of the shard.

Other people  crowd into the room now and they pry the shard from me and grab my arms and legs so I’m completely immobilized. Then at a word murmured by one of the male aides who have materialized out of nowhere, they swing me up onto the bed, like pitching a sand bag onto a levee. I scream but they ignore me and strap my ankles and wrists into leather cuffs which have been rapidly attached to the bed frame: four point restraints.

I continue to scream and scream, but nobody pays attention. A nurse comes at me with a needle,  saying it is Haldol and Ativan and proceeds to inject me. Although I am still crying that I want to die, that I’m Satan, the Ogre that ate Manhattan, that I killed Kennedy, I’m the evil one, the room then empties, except for a heavy-set café-au-lait sitter, who hollers louder than I do that her name is Caledonia. She pulls up a chair in the doorway, pulls out a cosmetics bag and proceeds to do her nails in spite of me.

I am told by Prissy that I scream most of the evening and keep the whole unit awake until given a sleeping pill and another shot. All I remember is restless twilight sleep coming at last, broken when a short sandy-haired woman, dressed in a sweater set and skirt, comes in and takes my pulse. I’m groggy with medication but she speaks to me nonetheless.

“I’m , Dr Corner, your doctor. You’ve had a bad night I see. Well, perhaps tomorrow we’ll get a chance to talk.”

“Get me out of these things!” I mumble angrily. I can’t sleep like this!”

“”Not yet. You’re not ready. But try your best to sleep now. We’ll re-evaluate things in the morning.”

Then she turns and is gone.

As I get to know her, I will like Dr Corner for her kindness, toughness and honesty, but I will hate her too for opposite reasons and it will be a long time before I  know whether the liking or the hating or something else entirely wins out.

The first thing that makes me know ECT is going to be different at St Raphael’s than the to the ECT suite in wheelchairs, the way I’ve known since childhood all hospital patients must travel. We walk there, all of us, down interminable corridors, around several corners, through doors to more of the same. In short by the time we get there I have no idea where we are.  I said it was a snap when I had it before, but now I feel like a prisoner going to the hangman, a “dead man walking.” Something about our going there in a group, under our own steam, makes it feel like punishment, like having to cut your own switch, not a medical procedure at all. This sets my nerves on edge. Then, when we finally get to the rooms clearly marked “ECT Suite,” instead of the doctor being ready for us so there’s no time to anticipate or fear what is ahead, we have to wait and wait and wait: we’re told the outpatients have to be “finished up” first. My apprehension grows. I’m used to getting to the ECT rooms and immediately climbing up on the table and getting it over with. Waiting and having time to think about it brings me close to tears.

Finally four in-patients are to be taken. I think the nurse calling us in senses I am too anxious to wait any longer, for she makes sure I’m with the first group. I clamber up on the table, and see Dr Corner looking down at me, smiling. I notice how white her teeth are and the little gap in her shirt across her chest as she bends over me, strapping something over my forehead as Prissy puts a needle into the heplock already in my arm. I feel my arms and legs quickly cuffed down by others in the team, a mask clamps down over my face and I’m told to breathe, breathe in deeply and I breathe and breathe and a chasm in hell opens and the demons reach out and scream as I plummet past into a terrible inky blackness…

I wake up a second later and immediately vomit into a kidney basin hastily held out by a nurse. “Why didn’t you do it?” I cry out, confused. “Why didn’t you do it, why did you made me wait? I can’t go through this again!”

Strangely, Dr Corner has disappeared, and so have Prissy and the nurses that had surrounded me just an instant before. Instead a plump, baby-faced older nurse smiles as she takes away the kidney basin and says, kindly, “You’ve been sleeping  soundly for an hour. They did the treatment already and you’re waking up. How about trying to sit up now?” Slowly, I push myself to a sitting position and swing my legs over the edge of the table. No dizziness, no more nausea. I feel okay, except for a slight headache. So I slide off the table and ask where to go. Surely they won’t make me stay a long while this time. The nurse leads me to a wheelchair and asks an aide to take me back to the unit. Ah, a chair at last. At least I’m not expected to walk on my own after that ordeal.

ECT Takes place on Monday, Wednesday and Friday each week and though I vomit many times upon waking up, that is the least of it. What I dread most is the anesthesia, how I plunge from perfect alertness into the dark pit and feel like I wake a second later, sick and confused. I grow more and more afraid until, at the end of a series of 8 sessions, I refuse to go on to a second, even though my symptoms are still severe and Caledonia comes to sit with me one to one more often than not. Dr Corner tries to persuade me, but I am adamant, No more ECT. Then she threatens to have the next series court-ordered  and to add insult to injury, she says she will force me to take Zyprexa as well, the drug I so hate. I explode.

“What! You f—ing can’t do that! I’m a free citizen, I’m not a danger to myself or anyone else.”

“In fact, I can do it, and I am going to do it, whether you like it or not. You need more ECT and unfortunately you refuse the only drug that is effective for you. Pam, look, how can you say you’re not a danger to yourself? Look at your forehead! That’s not the mark of  I  it’s just self-mutilation. Look at where you carved that mark into your hand when we weren’t watching you carefully enough. Isn’t that danger enough?”

“But I’m NOT going to kill myself. I don’t want to die. I just want to be disfigured so no one will want to be around me and they’ll stay safe and uncontaminated.”

Dr Corner’s eyes suddenly glitter and she has to blink a couple of times. “Well, I’m not going to let you continue to do what you want. Period.”

She was standing at the foot of my bed, one foot on a lower rung, casually holding a clipboard. But she moves closer to me, standing to one side, the clipboard clasped business-like across her chest. Gazing intently at me, she shakes her head in what appears to be sadness.  I’m not sad, I know what I have to do. I don’t understand why she feels this is so terrible, but I know enough to remain quiet. Finally, she turns and quietly slips out of the room.

This alarms me; it shocks me. I know she means what she says. Dr Corner never lies. Worst of all, Dr O’Hayley, my outpatient psychiatrist, has signed off on it well, agreeing  it is the only thing left to do, that already I’ve been in the hospital two months and little has changed, that the situation is desperate. The problem is that to get a court order I have to have a conservator who will agree to it. They appoint my twin sister and they discuss with her whether or not she’ll agree to forcing more ECT on me, in addition to Zyprexa. Despite fearing that I’ll hate her, she too is convinced there are no other options.

So Dr Corner wins and I endure eight more ECT sessions. Finally I’m discharged, much improved, so everyone says, a month later, promising, as a condition of my release, that I’ll continue to take Zyprexa. I do promise, even though my history clearly suggests that I will not.  I’m also supposed to return once every two weeks for maintenance ECT treatments and Dr Corner threatens me with a police escort if I don’t comply. But this time I thumb my nose at her. So, she’s going to get both the Hartford and the New Haven police involved? She thinks they are going to bother to arrest me just to drive me down to the hospital for ECT, something they themselves probably consider barbaric? J’en doute fort. I doubt that big time! In fact, after a call to the Legal Rights Project, I learn that any conservatorship was dissolved the moment I was discharged from St Raphaels and that the doctor has no power over me at all now, zilch. So I write Dr Corner a nice apologetic letter, but sorry, doc, no more ECT for me. Ever.

Several months later I pour lighter fluid over my left leg and set it on fire. So much for the restorative powers of electroshock treatments.

Art and artwork, Book, Drawing, Medication, Mental Health, Mental Illness, Schizophrenia, Uncategorized, Writing

From Memoir Sequel — A Little Bit to Entice?

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Maybe not my book, but hands holding her favorite book!

You should know that what follows is just a tiny scribble of what I have written, and it might not even make the final cut once I finish writing the book. But I put it here as a little enticement for readers, a tempting snack to “grow the appetite for more” when it comes out. That said, I must warn that in addition to alerting you that the passage below might end up on the cutting floor, if it does not, it still may not start the book. But here I am hemming and hawing and making excuses. Nothing wrong with posting what I have for now, for the nonce, even though I may remove it later on. Comments on subtitle would be greatly appreciated. If you have suggestions for improving it — the subtitle, i mean — so much the better.

___________________________________________________

BLACKLIGHT:  a memoir of one woman’s fight to recover from schizophrenia

Blacksoup,  tarstew, coffeecombs – submerged in the darkness of things I cannot face by light, inky, skeletal, reaching-out things that pinch and grasp and touch, I fight to swim away, even though away means into a blinding headache. I am sucked down again and then again, until through pounding surf, someone calls my name, almost too faint to hear. Desperate, I thrash upward, cracking the surface of the day and open my eyes. It’s well after dawn yet all the lamps in the room burn brightly.

“Pam, wake up. Unlock the door. I’m here,” someone shouts. The door thunders on.

What time is it? What day is it? I must have plunged into sleep the night before without awareness, for all I know is that I break into daylight like a common mole nosing into what feels like leaf litter and detritus, the remains of an old picnic. Popcorn is strewn across my lap and chair in a white rash.  Resting on its side halfway off the night table, a cup of coffee, now empty, its contents on the carpet. I hoist myself off the recliner with a groan, trying to shake off my shoulders the gargoyles of nightmare. I sleep in my clothes but I never go barefoot –too liable to be bitten by the inanimate fang of a tack or discarded fork– so it takes me a minute before I can home in on my flip-flops.

“Sorry, sorry, sorry,” Wrenching the deadbolt, I yank the door open. “I didn’t hear you. You’re early today.”

“It’s 8:30. No earlier than usual.” Elissa, her dark hair pulled back from her face, carries her big nursing bag and tablet computer. She wears slim, tight jeans and a ruched tee shirt that make her look thirty-five at most, not the forty-something she rarely admits to. She assesses me quickly before coming in and asking, “How did you sleep? And did you eat last night?”

Almost every morning begins this way, not with the bleep, blurt or blare of an alarm, on which I can mash the snooze button. Not even with the sweet sun-rising tones of my favorites song on iTunes, no, my morning begins with this won’t-take-no-for-an-answer Thor at the door. It’s not Elissa’s fault. Sometimes I leave my door unlocked before I cliff-fall into sleep so she can come in on her own the next morning and gently wake me. But not always, and then what can she do but hammer at the doorway of Oneiros, because nothing else will rouse me.

Elissa has been my primary visiting nurse for more than 10 years and she is the one who checks on me every morning, rain or shine, snow or hailstorm. She can read me by now the way a farmer reads the sky, and just one look or something in the tone of my voice tells her when things are copacetic and when they are not. She has seen me well and she’s seen me precariously ill and she’s the first to recognize when I’m somewhere in-between, headed in the wrong direction. Her main job is to keep track of and make sure I take my medications, but when paranoid, I have yelled at her or been snappy and high strung and irritable. She has never taken it personally. I no doubt have driven her nearly to distraction but she flicks all away as no big deal. I must say though that even though I wouldn’t admit it at the time, she has in more than one instance saved my life.

She keeps returning with a smile nevertheless and now instead of telling her how glad I am to see her, I turn away, mumbling that I had a lousy night. It’s true, but I feel like a lout for saying so. Or at least for saying so first thing.

_______________________________________________________

Argh, now all I can see are the faults, but I will leave it as is, and not panic or take it down at once. I have learned that there is no terrible tragedy is letting people see rough drafts or the work-in-progress, though it be only that, a rough draft, not the polished version. If nothing else, it proves that I too am  a human being who must write and make mistakes before editing and rewriting my copy. In fact, I rewrite a zillion times before I am happy with what I have written. Each poem takes at least 20 rewrites, at a minimum, and most take at least 50 while some over 100. As for prose, well, I cannot even begin to estimate how often I rewrite or revise each passage. but needless to say it is well over 50-100!

Not only is there no shame in revision, I take great pride in how much rewriting and revision I do. It is a point of honor with me that I take this much time with my writing and do not hurry it — ever.  People who believe that the first words that come out of their pen or mouth or computer are sacrosanct are likely to not be real writers, only dilettantes who play at writing, but never take it seriously. Who want to write, but who never really do so, except for in the pages of a journal or doggerel between friends and family.

Do not get me wrong, I do not disparage this sort of writing. In a sense ALL writing counts as writing. And all writing is good for a person. But not all writing is publishable or suitable for the public consumption, and that is what I mean by writing done by a “real writer.” Someone for whom writing is what life is all about. Someone for whom life would not be worth while if she could not continue to write. Someone who knows the value of editing and revising and rewriting and who knows that a good editor can a writer’s best friend.

Art and artwork, colored pencils, Drawing, Hartford, Mental Health, Recovery, Schizophrenia

ART SHOW IN HARTFORD

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Open Studio Hartford is a Hartford regional event that celebrates the arts!

This celebration of the arts combines art of all types and presents it to the community. For a full weekend in November, artists open their studios to the public or show in Hartford locations. Their wish is to inspire the community, make others aware of their work, and sell their art. Visitors enjoy the opportunity to meet local artists at studios, galleries and creative spaces in and around Hartford to browse and buy locally created art. The public also experiences live artistic entertainment at some locations!

2011 Opening Reception & Kick-off
Thursday, November 3rd, 6pm – 8pm
ArtSpace Gallery, 555 Asylum Street, Hartford, CT 06105
This year’s theme is “Double Digits”.
Parking: Park at Union Station, discounted rate provided by the Greater Hartford Transit District
The reception, featuring live music, will be produced by Artists in Real Time, Inc. and sponsored by local restaurants.

22nd Annual Open Studio Weekend in Hartford
Saturday & Sunday, November 12 & 13, 11 AM -5 PM
A self-guided tour of creative spaces that has taken place annually for 22 years, Open Studio Weekend is a creative showcase for local artists, produced by the nonprofit 501(c)3 organization, Artists in Real Time, Inc. Locations are open around the city and greater Hartford Region; thousands of attendees are expected.
FREE Event!
Parking: Park at Union Station, discounted rate provided by the Greater Hartford Transit District

 

Needless to say, I think, I will be exhibiting my artwork here, some of it about schizophrenia, some of it from schizophrenia, and a great deal of it about and in recovery. If you are able to attend, look for me on the 4th floor of ArtSpace, Hartford. Hope to see some of you there!

Book, Health, Mental Illness, Poetry, Schizophrenia, Uncategorized, We Mad Climb Shaky Ladders, Writing

Poems about Schizophrenic Symptoms: Word Salad and Delusions of Grandeur

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Poems can express many ideas and experiences. In my first book of poems, We Mad Climb Shaky Ladders, part of CavanKerry Press’ Laurel Books literature of illness series, I tried to express how I felt both during psychosis and afterwards. I also often tried to put myself into the experience of others who experienced symptoms that I might not, but which I could imagine.

One thing I know, having had this illness for so long, is that misinterpretation is rife. I mean things when I do things, just as anyone else does. But people simply make assumptions about my behavior and forget that they might need to ask why I do what I do. I have often asked others why they did whatever strange or seemingly outrageous thing they did, and lo and behold there has always been an understandable rationale behind it. For instance, when I stripped naked in that freezing seclusion room, I was neither “acting out” nor totally around the bend, no, my reasoning was that if I were naked they would have to give me something to cover myself with, i.e. a blanket, which is what I had been begging for all along. But they never asked me why I had taken off my clothing — a flimsy tee shirt and lightweight jeans. They just assumed — whatever they assumed. Ditto for almost every other interaction I had with them, and the same almost uniformly went for other people when they behaved in a way that was somehow contrary to expectations. The meaning of their actions was reasonable, given the context.

I tell you this because in my poem, Word Salad, even though it appears to be, well, “word salady” and incomprehensible, in truth there is “method” to it, and in fact if you read it with a mind towards understanding the links, you would appreciate them. But you might have to “surrender” to getting it, and let it in without trying to rationally, intellectually understand. Only afterwards could you perhaps try to figure out what precisely is being done and said in the poem. One clue you might need, if you have not been subjected to this directly is that often, at least in the past, “patients” of a certain kind were asked to interpret proverbs. “Can you tell me what, ‘A rolling stone gathers no moss’ means?” or “What does ‘People in glass houses shouldn’t throw stones’ mean?”

As for Grandiose, the same thing holds. Read it aloud and try to get the sense of it, how it reads. Then you may in fact understand what is going on “in one blow,”  so to speak. It is full of double entendres, on purpose. Remember that “live” can be pronounced in two ways. Both of these hold.

WORD SALAD

“Word salad,” a term used for the completely disjointed, incomprehensible language sometimes seen in schizophrenia

Unpinned, words scatter, moths in the night.                                                                      The sense of things loses hold, demurs.                                                                     Everything means. Numbers soldier
with colors and directions, four by four
in a pinwheel: this is the secret wisdom.
I inscribe it on sacred sheets of paper.
The Oxford Dictionary holds not a candle.
The self reduced to a cipher, a scribble,
the Eye is all, with a Freemason’s lash,
and 26 runic hieroglyphs to share
how a stitch in time saved the cat
and if a messy rock gathers no stones,
clams must surely be lifted higher
by the same rising boats. Why, why not throw
glass tomes at grass huts? It is a question
of propriety: grass is too dignified to lie down
before gloss. Whirligig! How to pull the center
back into the world? It would take all
the OED to recapture the moths, all Harcourt’s
English Grammar to pin them again.

GRANDIOSE 

He says:
I was always more important than you though
with your cutting me down to size quarrel
about just who I thought I was. I thought I was
with my long dark hair and beard and rough
working clothes John the Baptist, prophet of God
wild man of the wilderness and would have
to preach the word of a savior I didn’t quite
believe in. I mentioned my conviction to a friend
who told me to make friends with a mirror,
discover which John I really re-incarnated. Lo,
I looked and saw the more famous than Jesus
John staring with his small important eyes
behind his too small eye-glasses at me staring
into the mirror at myself, yes, I wrote the songs
you grew up on: Yesterday, Give Peace A Chance,
Eleanor Rigby— yes, I was the one you swooned
over and screamed for, yet now you only shriek
at me, taking me down from a peg on the wall.
Why do you yell, Get lost, baby? Imagine all the people
who would rejoice to see me live once more.
Medication, Schizophrenia

Latuda: brief personal review

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Due to a personal tragedy, I have been off line for a long time. Please go to my other blog to read this review, just written tonight.  I will be back here soon.

http://aboutschizophrenia.blogspot.com/search/label/Latuda

Thanks all,

Pam

Eating, Medication, Prisons, Psychiatric Unit, Psychiatry, Schizophrenia, Seclusion and Restraints, Violence

Mental Illness and Authority: Part II

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I started the post below as a response to a very kind email from “Mary” but it eventually got so long and involved that it became more of an essay than a letter. I hope she will understand why I put it here, rather than sending it to her alone!

_____________________________________

First, here is her letter to me:


Thanks, Pam.   I learned from your very well written account, “On Psychiatry and Authority.”  I felt like I was in the room with you, it was so descriptive.  I recently had a call from a man who is bipolar.  He said while off his meds, he was in an encounter with his girlfriend and was arrested on domestic violence or disturbing the peace charges.  He told the officers he was a psychiatric patient, but of course, jails have become America’s answer to mental illness.  The police threw him into a cell after booking him, then released a police dog on him in the isolated cell rather than simply locking the door.  He said the dog ravaged his leg, exposing bone, and he was taken to the hospital.  There may have been a time when only black mental patients were treated this badly, but the caller was white.  I wrote about more murders and abuses against mentally challenged people in my blog – Letter to Mary Neal’s Terrorists – http://freespeakblog.blogspot.com/2010/10/letter-to-mary-neals-terrorists.html

I am still undergoing much censorship, Pam, likely because my advocacy to decriminalize mental illness is a threat to the private prison industry.  Over half the inmates in America are mentally ill.  If they are released to community care under AOT programs or treated as hospital inpatients rather than prison inmates, depending on their offenses and functionality, it would not be more expensive for taxpayers, but it would negatively impact prison profits.

As I read about your brutal treatment in the hospital, I was so sad.  Here I am advocating hospitals rather than prison, and you were treated that way by psychiatric professionals.  The only way I can continue after learning what happened to you and others who were in abusive hospital environments is by thinking about people like my caller who was not only tossed in an isolated cell naked, but a vicious dog was sent in to attack him after that.  I also think about my brother Larry who was murdered under secret arrest because police were fed up with being his psychiatric caretakers.  Although hospital care is only marginally more humane than incarceration in some cases, there are fewer permanent physical injuries and murders among hospitalized patients.

Thanks for sharing your experiences.

Mary Neal
Assistance to the Incarcerated Mentally Ill
http://www.Care2.com/c2c/group/AIMI

And my response:

Thanks so much for your email and sympathetic understanding of the traumatic aspects of my so-called “treatment” at Muddlesax Hospital last April. Such treatment was, at other hospitals especially in the 80s and 90s and even in the early 2000s, so much worse — I mean in terms of real physical violence perpetrated against me while being literally, bodily, forced into restraints — that I was almost reluctant to write about such a relatively mild incident. But the humiliation of having to put myself into restraints was almost more unbearable than the, in some sense, honorable freedom to resist! It just riles me completely…How dare they put me in such an untenable position? Then again, I suspect it was intentional.

Nevertheless, I am very much aware that in Connecticut hospitals way too many people have died while they were in restraints, and this in the not so distant past. In fact it was investigative reporters at the Hartford Courant back in the late 90s —and their article entitled, I believe, Deadly Restraint — that served as a national catalyst in getting hospitals to stop the wholesale use of seclusion and restraints. At the very least it started a national discussion about the use and abuses of force in psychiatric hospitals and (I think) juvenile detention centers. (God forbid anyone at all should care about jails and prisons however…Those people obviously deserve it, they are criminals after all… Right?)

But even though most hospitals in Connecticut claim to have reduced the use of force to the most extreme cases, (they will force medication though, through the use of forced medication hearings) I do not believe that can be so. Because I cannot believe that I alone “deserve” seclusion and restraints and yet I have been subjected to such abuse time and time again. Until 2005, I was put in S + R at least once almost every time I was hospitalized and quite often multiple times, for many long hours. After 2005, I would say the incidence was reduced by about half. That means that half the hospitals still indulged in this abuse, one of them, as I wrote earlier in this blog, employing them almost every day for a week and a half!

Of the hospitals that did not physically restrain me,  most were still abusive, but more subtle about it…For instance, they would put me on Constant Observation, but then tell the “sitter” not to speak to me. Or they would institute the common but for all the commonness of it, still abusive policy, of making the one-to-one person being ignored sleep with her hands and head completely uncovered. Now, all hospitals are freezing these days, I do not know why. But it was well known that you had to bring a sweater or sweatshirt everywhere, because the air-conditioning would be out of control and everyone was too cold no matter the season. So to have to keep your hands exposed all night was cruel. But the reason that they insisted on it clearly had nothing to do with it being “safer” for the patient. No, it was punishment. That is ALL. The whole purpose of one-o-one in those places was punishment. You could not talk to the sitter, one, and the sitter had to follow you even into the toilet. And all the while deliberately ignoring you if you spoke to her..So what was the point, if they kept the close eye on you they were supposed to, they knew you could not hurt yourself.  So the point was simply to humiliate and torment the patient so they would beg for “freedom” and pretend or at least mouth the words “I am safe.” Those magic three words were all that were needed, but you had to say them so that the nurses could hear.

For many years, I believed that this was a hospitals-wide, state-wide, business as usual policy, the no-talking, hands exposed rules, and that it was reasonable. Until I went to Natchaug and Sharon told me that Natchaug didn’t believe that one-to-one should be “punitive” in any way. And by the way, she said that word, “punitive,” not I. Nevertheless, at Natchaug, no one made me sleep with my hands outside of the covers and the sitters freely spoke with me. In fact, once they understood that I needed them not to share their own lives with me, because then I would feel the need to take care of them, something that would not be helpful to me, they wanted to find out specifically how they could help me.

But back to the use of restraints. I am only 5’ 3” and from 2005 until 2010, I weighed between 92-105 pounds. Surely I could not have been that great a threat to anyone. In fact, at one hospital, one I will not name, fearing them so much I wouldn’t put it past them to take revenge, they had a somewhat better policy of dealing with agitated patients.  At a Code Orange, staff members from every unit converged on the “victim” (sorry but that is how it felt) and  “held” her until she could calm herself. Now, this “holding” often consisted of pinning her bodily to the floor, which itself could be anxiety provoking. And at least once, in my case, a male nurse who openly detested me, tried to pin me to the floor on my stomach, which I had read was something to be avoided as people had died when held down prone, as opposed to supine (on the back)! But in general the technique worked, if the victim was held down long enough. Basically, if he fought, there were enough people holding him down to allow him to exhaust himself without doing anyone harm. And then, when exhausted, he would calm down and either take PRN medication, or assure the head nurse that he would be okay now. It worked, though, no matter what I thought about it, or of the people doing it. And it did avoid all use of restraints, though of course by itself it is already a form of restraining people, it just avoided the use of mechanical restraints. That though, still makes a big difference…

Forgive me if I segue again into another digressive subject for a minute or two, but the subject of 2010, which recently turned the decade corner into 2011, brought to mind the fact that having taken Zyprexa (most of the time) since then has caused me to gain a fair amount of weight, another subject that is near if not dear to my heart. Oh, the damage that psychoactive drugs do! How dare doctors blame us, the people with schizophrenia, for it? Don’t we have enough trouble without being blamed for the side effects of the very medications that they prescribe? Do you know that for decades, and sanctified as Truth in psychiatry textbooks, they insisted, without any reason and making less sense, that schizophrenia itself was the cause for so many of us to be obese? That was utter nonsense to my way of thinking. Every single memoir about sz that I ever read revealed that the author had been thin UNTIL she or he was treated with antipsychotic drugs, and then, blammo, food becomes the enemy. Yet the shrinks actually insisted, against all the evidence, that it was the illness and not the drugs that was behind the huge % of patients exhibiting this “signal obesity”.

Well, all along I thought they were full of shit, pardon my french. No, I didn’t just think it, I KNEW it. I had not a doubt in the world. And you know what? I was right. The latest research has borne out precisely what I’d asserted all along: when investigators looked at a population of people with schizophrenia that for one reason or another had never taken antipsychotic drugs, they discovered that this neuroleptic-naive group was thinner than average, and that it was in fact the drugs that had made us obese, sometimes massively so, rather than schizophrenia. And it just infuriates me, not just the obesity, it is not just the weight gain the drugs cause, it is the fact that we patients have been blamed for something that they, the doctors and nurses and their GD drugs, inflicted on us. Maybe it is especially difficult for me, with my history of anorexia and my intense wish simply to disappear, but what about those who will die from drug-induced heart disease or diabetes?

I know, I know, Mary, you may be on the other side of this argument, or it might appear that way, because you want more treatment to be available, not less. I do in general agree with you: Prisons are overflowing with the mentally ill, who should never have been there in the first place. In fact, I think the prisons are overflowing with an awful lot of people, especially those of a certain darker-hued skin, for little reason more than the very color of their skin! I mean, tell me why Robert Downey Jr and Lindsey Lohan, aside from their celebrity status, get caught again and again with drugs and cocaine etc, yet are sent off to posh rehab centers, with a smile. But should you happen to be an unknown, POOR, god forbid mentally ill person of a darker hued skin (and let’s face it, a light/white South African immigrant would not be treated the same way as a dark-skinned someone with Nigerian roots!) if you are that person and you offend in some way just 3 times, well, then, you are sent away to one of California’s really “posh” ha ha ha penitentiaries FOR LIFE! Things like that just make my blood BOIL. And don’t get me started on the insanity of our drug laws!

But forgive me for going so far astray. It is just that the whole subject of prisons and what we do to people in them is a really sore point with me, and not just how we treat the mentally ill there, though that is about as atrocious as it can get…Need I even mention the “extra beds” in unused supermax prisons being used to house “unruly” MI prisoners? It makes me want to scream and throw up at the same time.

Well, no doubt this “essay” is both incoherent, in the sense that it doesn’t cohere properly, and just plain incoherent! I admit to a bit of laziness, as it is late at night, and i need to take my MEDS and go to bed. So, at the moment, I am not going to polish and fix it. I am going to pretend that since this is “only” a blog I can get away with shoddy ill-organized writing, and call it a night. Which is what I am doing forthwith…Good night, and thanks, Mary N, thanks a million again.

PW

Appetite, Eating, Nutrition, Schizophrenia, Zyprex

Symptoms, Zyprexa and Recovery Again

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Zyprexa: "The miracle and the monster"

 

Yes, I am kinda sick of this rollercoaster, myself. But there you have it. If I will not or cannot take the medication, and I have no other choice, what is a person to do? I know it is a miracle drug, yet I fight taking Zyprexa at every possible turn. Why? Because, frankly, I cannot tolerate the enormous weight gain it caused the first time I took it – and for many years, off and on. I simply cannot stand being that visible, eating up so much of others’ air, intruding, in truth obtruding into their space as I do  even now…People will ask me questions about some “trade-off” as if it were so easy as that, as if THEY could easily decide, would have no trouble opting to take the drug, and die early from diabetes, which almost a foregone conclusion after becoming obese on Zyprexa. Hell, even without the obesity factor, people develop diabetes on the drug…And that’s only for starters, what about the cholesterol and triglyceride levels  that go up and up? Or is that part of the trade off too? That a person with schizophrenia should not care about elevated levels the way anyone else does…

I have mentioned here, I believe, the recent studies that have shown that people with SZ  become overweight and obese SOLELY on account of the medications. Without these medications, as a group we would tend to be thinner than the average adult. I have suspected this for many years. It would seem to me that every time I read a memoir by someone with sz, they would tell a tale of being a very slim person, until they were plied with some typical or atypical anti-psychotic, at which point they started gaining weight. Now, it was never clear to me whether or not the old drugs really helped much of anything, except to alleviate a few positive symptoms in some people.

Oh, those who disturbed the peace could be quieted, calmed yes,but no one was cured. I met very few people who wanted to take meds because the drugs actually made them feel better. Oh, perhaps they did, since if one got rid of the hallucinations and delusions of course one would feel better. But for myself the old neuroleptics  didn’t work particularly well on either positive or negative symptoms, and the side effects were awful, esp the deadening  lethargy the drugs produced. I would never choose to take any of those drugs and I agreed to take prolixin because it was the lesser evil because otherwise, they would threaten me with consequences far worse…But had I had the choice no way would I have chosen to take any of those drugs.

I’m terribly sorry, but I must stop here. I just wanted to get start on someting, but it is 4 am and I need to go to sleep, plus my eyes are so wonky all over again that I can barely see what I am doing, and at times I cannot at all. My eyes are going nuts again, crossing over or going outwards whatever! All I know is the text dances around and I cannot see through the jumble of letters frlying around. It is hard even to figure out which hand is doing what!

Well, enough for now. I hope to be back here tomorrow, but time has a way of getting away from me…

Certainly, the side effects of drugs like Thorazine were problematic enough to begin with. And count weight gain among them. How is it that any doc in state institutions could not see this correlation? But as you know, “there are
none so blind as those who will not see…”

Blog, Psychiatry, Schizophrenia, Uncategorized, Writing

Delusions of Grandeur

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To all whose websites I had linked to, I had to take them down because my email was hacked, but I will post them again soon. The email problem is completely resolved now.

________________________________________________________

First I will paste in what I wrote back in 2006 about Delusions of Grandeur, henceforth  reduced to the easy-to-understand shorthand, DoG. (Sorry, all you dog-lovers out there!) Then I will elaborate and/or explain where I differ in my thinking now.

From July 2006, then (with a few edits for easier reading):

Delusions of Grandeur

Where do they come from? Mine were usually of a negative grandeur as you know. I was  the devil, the most evil person in the world, I needed to kill myself or burn myself to a crisp in order to save the world from my poison. I even went so far as to set my leg on fire, prelude to setting myself on fire in order to do this, and burned marks on my forehead to prove I was Cain, so people would be warned and stay away…as a result I have had ECT, been restrained, isolated, locked up for months and all the other humiliating things they do to people they think might seriously hurt themselves or others. And obviously I might have, and did. But whence came this sort of thought? And why do others believe they are God or Jesus Christ or as one person I met claimed, the song-writer who provided John Lennon with his music. Their delusions may seem more positive than mine, yet I know they suffered much as I did, probably because they too went unbelieved and scoffed-at. Where does this kind of false belief, clung to in the face of so much evidence to the contrary, come from?

I’m not completely sure but DoG seem, both in their positive and negative incarnations, to derive from a terrible feeling that you lack self-worth in the world, your secret knowledge — if you have SZ or another devastating mental illness, that it has robbed you of everything you were supposed to have, be and do, that you are entirely useless and empty and without value in life. The illness itself produces this feeling, and the feeling is secondarily strengthened as a result of having the illness. People who develop DoG respond to their feelings of worthlessness  with the conscious or unconscious fantasy of a powerful false-self to make up for the lack of real power — to do, to be, to create in life. Others, like me, accept our lack of value, only we exaggerate it until it becomes the dominant factor in our lives and colors everything, so that we cannot but refer everything to it and see all through its lens. We become convinced that if everything in our lives is contaminated by our worthlessness, maybe everything in the entire world is contaminated as well.

I don’t understand the transition from feelings of worthlessness to actual belief in false and grandiose facts, the transition to delusion. But I believe the connection is there, from lack of any sense of self-esteem transitioning somehow to delusions of grandeur. And that either positive or negative delusions all derive from a negative feeling, a lack of positive self-regard. I don’t think anyone who truly feels good about him or herself would ever suffer in such a way…

_______________________________________________________

I must have gotten tired near the end there, as it feels to me as if I simply gave up midway, and relinquished my train of thought, and my pen, so to speak, before I’d even tried to finish. Be that as it may, on rereading the piece, my first impression, the first thing that struck me and struck me with a punch was my use of the past tense when I was describing my own experiences with DoG. This seems to me, even now, as stranger than strange. Does it mean that there was actually a time, and relatively recent to boot, when I did not believe myself to be the devil, not feel that I was evil, did not secretly want, though in a controllable way (controllable in the sense that I will not do it, so fearful am I that it would eventuate in another terror-filled hospital stay…) to destroy myself via the flames? So it seems, but if so, I have as assuredly forgotten how that felt, how such thinking was as an experience, as I have the entire 6 weeks I spent in the hospital this past April and May. Which is to say, “utterly and completely.”

What I can say now, is that it is much harder to write about DoG at any distance, or with any real so-called insight into myself (despite reading my own words) because the feelings of evil and worthlessness I wrote about in the past tense then are so strong now, in the 2010 present. I won’t, at this time, ask (rhetorically) What happened? That is for another essay. But I will admit that for me to continue with this discussion I will have to refer to what I have observed about others and their DoG, rather than any I may or may not experience myself.

Zo! Here are basic definitions, lest you have forgotten them. For my nutshells, I quote the online Free Dictionary (thefreedictionary.com).

Delusion: an idiosyncratic false belief that is firmly maintained in spite of incontrovertible and obvious proof or evidence to the contrary.

Delusion of Grandeur or Grandiose delusion:  delusional conviction of one’s own importance, power, or knowledge or that one is, or has a special relationship with, a deity or a famous person.

delusion of persecution a delusion that one is being attacked, harassed, persecuted, cheated, or conspired against.
delusion of reference a delusional conviction that ordinary events, objects, or behaviors of others have particular and unusual meanings specifically for oneself.
Now, thinking about the problem I had when I first wrote about DoG, take that fellow I met, the putative song-writer of all John Lennon’s songs. He was not a happy guy. He gave not the slightest appearance of being thrilled that his songs were so popular and that Lennon had chosen them out of all the offerings he could have picked to sing and record. He claimed that he had given them freely, and wanted neither fame nor fortune, as I recall. But what troubled him, it seemed to me, what that “we,” the — I dunno what you would call “us” — ordinary people, not the rich and famous, not the celebrities with whom Lennon would have hobnobbed, but the (where did I get this word?) lumpen-prole. Actually, I think it was rather much smaller than that, even. I think what troubled him was that  other patients and staff members in the hospital (at that particular time) didn’t care, appreciate, value or even believe his great contribution to the musical world. Nevertheless, despite the use of very controversial ECT (shock treatments — which were rarely used in schizophrenia, and even today are not used often for SZ) his delusion persisted throughout his stay, and by the time I was ready for discharge after 2 months, he was being transferred to a longer stay facility.
Needless to say, whether a delusion of grandeur is “positive”, which is to say that the power one arrogates to oneself is “good” –one is God or Michelangelo or John Lennon’s songwriter, or whether it is “negative” in the sense that one believes one has the power of The Black Plague, the Great Influenza or Satan etc, there can on occasion be little else to distinguish them. Unbelieved, scoffed at, dismissed, ignored,  no one thrives. For some reason too, and again this is solely from the point of view of my experience, people with schizophrenia experience this dismissal, this isolation (from and by others) much more often than those with bipolar illness. This is not so incomprehensible either.
Someone who experiences mania may and often does espouse vastly grandiose delusions, but they can at first be so ebullient, so enormously cheerful and expansive (I think of poets such as Walt Whitman, whose Leaves of Grass, written and rewritten so many times, and so long and expansive itself it almost screams manic-depression — if you can forgive an exceedingly amateur diagnosis) that people are drawn to them, at least at first and for a time. In the grips of mania, a person can convince “anyone to do anything” they are that persuasive and indeed charming, in every sense of the word. But at a minimum, most do not drive everyone away from them, not at least in the beginning. So when a manic person says they wrote the songs that John Lennon sang, one is tempted to at least half believe them, and say, “Hey, you did? Cool! Tell me more.” But that fellow in the hospital, no one so much as listened to him, nor gave him the time of day when he went into his “thing” about Lennon’s songs, and so he was simply left alone to talk to himself.
Hmmm, have I wandered off the topic, or gone too far astray from where I was supposed to be heading? Well, if I have, forgive me. It’s the sort of thing I do all the time in my journal, and frankly it is far too late at night for me to remedy it, alas. So I will stop here, take a stab at proofreading, and hope I have written at least a few things for you to ponder.
As you know, I will be away from the 14th through the 21st, at the Writers’ Fellowship, so if I do not write before then, never fear. I shall write when I get home. (On the other hand, since a Silent Retreat will be going on at the same time, and since there is also Wi-Fi connectivity in the main social area or somewhere — and no one there to socialize with, who knows, I might even avail myself of the internet, and post something from there!)
Get to bed and sleep tight, all youse who are still up with me.
PS I do not know why the paragraphs in the last half keep running together but they simply will not separate no matter how many spaces I edit in between them…sorry!
Appetite, Blog, Eating, Medication, Nutrition, Schizophrenia, Uncategorized

My Pyramid Tracker, plus Another Medication Change

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Before I tell you about the most recent medication change, I want to let you know about  My Pyramid Tracker at  http://www.mypyramidtracker.gov, a website of the USDA’s Center for Nutrition Policy and Promotion. My Pyramid refers to the new and improved USDA food pyramid (http://www.mypyramid.gov) which, by the way, recommends only five and a half ounces of meat or beans a day, which is just a little over a quarter of a pound. The pyramid tracker website is one I highly recommend, however, especially  if you are interested in losing weight or in keeping track of what you eat and how much you exercise. In fact, it is a website worth looking at even if you are only curious about how many calories you expend in everyday activities. You can use it  every day or once a week or on any schedule you choose, and all you need to do is follow the easy instructions at the end of any given day to see how you did, though it helps if you jot down what you eat during the day, so you don’t forget entirely. Every time you log in, the site keeps track, so you can see stats later on about how you are trending.

My Pyramid and the Pyramid Tracker are great sites for general nutrition info, calorie calculation and the general calculation of energy expenditure in your daily life. You can compare what you expend to your daily calorie requirements. That is, by counting such activities of daily life as dish-washing and childcare and yard-work as forms of exercise the site will tell you how many calories you expended on them. It also calculates your BMI — body mass index — your ideal weight, and how to achieve it as well.

Click this

If you happen to be interested solely in finding out how many  calories are in a given food, however, the Nutrient Data Lab website is great. It has a large number of brand name foods as well as fresh and raw foods as well: http://www.nal.usda.gov/fnic/foodcomp/search/index.html

Should you be on medication that causes weight gain, or makes it difficult to lose what weight you formerly put on, check out those sites (above). They could make a big difference, or at least be a helpful tool in your efforts to keep your weight under control. But two things nonetheless are very important:

Please, do not beat yourself up if you cannot lose weight.

Remember that will power is a matter of chemistry, not bad character.

In fact, in FACT, it is your meds and the chemical changes that they produce in your brain that has caused you to gain weight. It is NOT your schizophrenia and it is NOT your fault. Do not believe whatever they say about research “proving” a close link between your diabetes and your having schizophrenia. That is utter B.S. Diabetes is on the rise everywhere in the country and its increase is directly related to obesity: one gets obese because one eats more calories than one expends. Being more than a little overweight is known to be a huge factor in Diabetes, type II (insulin insensitivity).

Now it is true that you might have been or become overweight without the meds, but I assure you that certain meds all but guarantee it. When researchers have the gall to say that somehow obesity is directly or in some sense causally related to schizophrenia, or that diabetes is genetically connected to schizophrenia, that is a load of hogwash, and I suspect those researchers are on the take from certain well-known drug manufacturers. I’ll bet that for many of you who were once thin before you took medication, whether it was the older drugs or the newer atypicals, it was only when you started taking antipsychotics (and some antidepressants as well) that you began to gain weight, sometimes massive amounts. But “they” want to tell you that it has “nothing to do with the meds” no, it is YOU, it is your illness, not the Zyprexa or the Seroquel or the Risperdal that caused the weight gain, or for that matter, not the Thorazine or the Mellaril or the Prolixin. We know better. They also want to tell us that if we die 25 years earlier than our peers, that is our mental illness speaking or our own fault (somehow) and not their iatrogenic — that is to say, medically-caused, doctor-caused —  drug-related obesity, diabetes and heart disease. I won’t even mention the generally dismissive attitude of many doctors towards the physical complaints of anyone with a major psychiatric diagnosis, it is no minor problem.

So, what to do? Well, there is not much you can do at this time, if you have found a med that works well for you and are able and willing to tolerate the weight gain and potential side effects from it. In some ways I admire those who will make this trade-off, though I worry that they will lose their new found lives early because of it, in which  case is it really worth it? But I know that for some people it indeed is, and I would never question their choices. For me, I am lucky enough to have responded to at least one less-weight problematic drug besides the miracle drug/drug from hell Zyprexa, which is the combo: Abilify/Geodon. The Geodon by itself seemed to me virtually worthless, at least it seemed to do almost nothing for me in terms of improving my cognition or creativity. The Abilify vastly increased my cognition and such, but at the expense of extreme irritability and rage. However, the serendipitous co-administration of the two solved the problems of each so that now I can feel creative and cognitively less impaired (I still cannot read, alas) and yet I am not at all irritable or enraged. Added to that is the fact that my appetite is under control again. While I have not yet started to lose weight, which is already at a decent level, according to most people (just not me) I no longer find myself raiding the fridge constantly or exhibiting uncontrollable food-seeking behavior all day, hungry or no. It feels much better not to feel yanked around by the nose by a med that never let me feel in control of myself…

But what happened to the Saphris? Well, two things: one, I simply could not sleep, and that is a weird thing for someone with narcolepsy to complain of! It was great to be awake all day, but I was awake all night as well. I would but up except for an hour or two for days on end, and it was exhausting. But worse, according to my psyche, was the fact that I ate less than 700 calories a day, walked 8 miles a week, — keeping track via mypyramidtracker.gov and the nutrient data lab — and yet after 2.5 weeks, I didn’t lose a single pound. This was so terribly depressing that I had to change it, had to go back to the Geodon and Abilify on which I got to the weight I was truly comfortable at a couple of years ago…Now, though, I have to try hard, and i will, because I am determined to get there. My father is always saying, Appetite comes in eating. Well, he is absolutely correct. But the opposite is also true, because the less I eat, the less I want, and the more I forget to eat, the more I, well, forget to eat…As far as I am concerned that is fine with me.

I think that is all that I have energy for today, because I want to continue to read Karen Sorensen’s site and blog, which I haven’t seen for a long while. Her art is so creative. It might be called, as my professionally trained artist friend said, Outsider Art, but nevertheless she has such an imagination that I feel stunned. I simply cannot let myself go and “let it all hang out” as we used to say in the “old days.” I don’t know how to do it, not graphically. Not pictorially. I am so hung up on getting my pictures and portraits perfect that I cannot relax and let my mind run free. I can do so in poetry, let things happen, and to hell with what my inner self is “really” saying, Let the shrinks figure it out! But in a painting or collage, I have to be in control, I don’t know why. Perhaps because I am so new at it…?

Thanks Karen. I love your gallery, where I can “flip through” your art works and see them en masse.

I also have to visit Kate Kiernan’s  Ying and Yang blog as her writing is as good as her art, which is saying a great deal. I am not sure which I like better, though I don’t really need to choose, as her writing is very different from her paintings. Kate is also a terrific songwriter/singer as well. On her blog you can sample all three. She is truly one of the most talented people I know.

You can find both Karen’s and Kate’s websites on my sidebar.

Empathy, Schizophrenia

“Am I a horrible person?”

5 Comments

I received this comment a few days ago, and I wonder if anyone — somebody, please? — has a response for the person who wrote it. This wrenching question seems to me to embody one of the most painful and awful choices that siblings and even parents of people with severe mental illness may sometimes feel they have to make in order to save their own lives and their own sanity….Or not. What do people think?

“I have a schizophrenic brother, he became ill at 27,
and it was a terrible time. My brother is now 54 years old, my parents have long since died. I have no
relatives that care about him or me. I have to tell
someone I don’t know where my brother is, he was in a
group home and was told he could no longer live there
this home was horrifying. I tried all my life to help
my brother, I had no life, I finally just had to let
him go, I pray god is watching over him. Do you think
this makes me a horrible person?

4 Answers from comment section:

#1 Wow.
I want to respond – though I’m sure how. It can very difficult to find the right words sometimes.

You asked: “Do you think
this makes me a horrible person?”
No. I do not. Caring for someone with mental illness is a very difficult road to follow. It can take so much out of you and from you…that there is simply nothing left to give.
If you are unable to care for yourself properly, meet your own personal needs (physically, spiritually, & mentally) – then how can you expect to do it for someone else?

I can’t imagine what a difficult choice this was for you.

Best wishes,
~V.

#2  I ask myself this question as well. My wife is suffering with a serious mental illness. Her diagnosis is major depression with psychotic features, although bipolar has not officially been ruled out. I’ve been writing about my experiences as a care provider. It’s not easy. I don’t want to quit or walk away from her, but it’s not necessarily easy to keep going. I plan on continuing to blog about my experience as the family member who is trying to help, so that people like this reader can hopefully find some encouragement.
And I don’t think that this person is a horrible person at all.

#3

Hi Pam,

No, I do not think that this person is a horrible person at all for detaching from her brother’s problems. Whether we like it or not, we have to find the solutions to our problems. Her brother has to do what we all at some point have to do: reach out for help. He has the ability to do this. I’m sure of it. And I know it isn’t easy, but it is possible. Sometimes the best form of help comes not from family members, but from virtual strangers who have dealt with similar problems or are in the helping professions. The people who are closest to us can carry emotional baggage and this can both get in the way of helping and result in hurt feelings. But the people who are not so involved in our personal lives can often give a fresh perspective and can be genuinely helpful. This takes the pressure off all concerned. Ideally, family members should be able to provide some support, but not if it robs them of their own well being. I agree with V. if you don’t take care of yourself, how can you be of help to anyone else?

#4  The person writing to Pam described themselves as having “no life at all”.  This sounds depressing and sad.  They sound like the quality of their life is so bad, that they couldn’t take on the burden of seeing to the quality of their brother’s life.

I see in my family that my sister is weakened by a slight touch of the schizoaffective disorder that I have, and perhaps my brother as well.  But I am also confident that they would not desert me, as fragile as they might be.  This gives me strength and confidence to live, because I am dependent on the kindness of others, be it the government, or my husband, or my parents, or my siblings.  I cannot provide a roof over my head or feed myself.  I cannot work for a living.  If it weren’t for charity from the people who love me, I would be homeless.

I don’t think this person is horrible, I think that they are in pain, and they have burdened themselves with even more pain by turning their back on their brother.  One of the ways to have a fulfilling life is to do charity, is to be giving, and to go the distance for someone other than yourself.  How proud this person would be if they had saved their brother!  Suddenly, they would indeed “have a life”.  They would have been a hero.

This writer has traded their brother for a large helping of guilt.  I don’t intend to increase or decrease the feeling of that guilt.  But I know that if I had my brother’s life in my hands, I would not trust him to God, I would do what ever I could to tend to his welfare.  My meager resources would be used, my emotions might be stretched, my patience would be tested, and yes, the life of another human being can be a heavy load, but I would take that load and offer if it were the only thing I had, the living room sofa!  I know that social services would come to my rescue, although it may take a long time for them to be mobilized.  I know a schizophrenic in my area that had to wait two years for a government funded apartment.  But the apartment eventually came, and now he is safe and secure.

Doing what is right can be hard.  Following your heart can lead you into a wilderness that is unforeseen and perhaps, terrifying.  But I know my heart, and it would never tell me to turn my back on either my brother or sister.  In fantasizing about helping them, I can only believe the final result would be satisfaction.  And knowledge that the heart has won.

Health Care Reform, Lyme Disease, Mental Health, Prisons, Psychiatry, Schizophrenia, Uncategorized, Violence

The Mentally Ill in Prison and Out-patient Commitment Laws

3 Comments

Dear Pam,

Thank you for the link to the Dr. Manny Show. There are indeed many faces of mental illness. Some people have mild cases and are able to work and function at the same level as anyone else.

Congress passed mental health legislation in 2008 providing for workers who have psychiatric dysfunctions to be covered under their employers’ health insurance at the same rate as employees with physical illness (certain exclusions apply). That was a positive step. However, acute mental patients do not benefit by that law, because severe mental illness is often too debilitating for victims to work, especially without the psychiatric treatment they need. In fact, people with acute schizophrenia, bipolar disorder, PTSD, and other conditions frequently resist treatment even when it is available to them.

Unfortunately, 1.25 million mentally ill Americans are currently imprisoned for offenses ranging from simple vandalism or disturbing the peace to murders. Last January, Rep. Eddie Johnson (D-TX 30) introduced H.R. 619, a congressional bill to resume Medicaid coverage for inpatient psychiatric care for patients in crisis and for people who require long-term containment in a secure treatment environment (such as patients who have done violence).

H.R. 619 is an important bill that deserves our support. It was largely the removal of Medicaid funding several decades ago that led to criminalizing mental illness. That in turn led to many other problems, such as overcrowded prisons and a burdensome prison budget. Hundreds of thousands of acute patients were “de-institutionalized” in the 60’s and 70’s only to become homeless and/or prisoners. Thousands of acute mental patients continue to be dismissed from mental hospitals and prisons without subsistence assistance and provisions for continuous monitoring and treatment under programs like Kendra’s Law.

Assisted Outpatient Programs like Kendra’s Law have been proved to reduce homelessness, arrests, hospitalizations, and incarcerations by up to 85% (among New York participants, compared to their circumstances three years before becoming program participants). The impressive rate of reduced arrests and incarcerations also indicates that community safety was improved significantly as less crime was done, and it also follows that the prison budget was lessened by helping patients with living arrangements and mandating continuous psychiatric care for ex-offenders and former inpatients who often lack the wherewithal to make wise treatment choices and avoid psychiatric crises.

Assistance to the Incarcerated Mentally Ill (AIMI) supports Rep. Johnson’s bill, H.R. 619, as well as NAMI, Treatment Advocacy Center, and many other mental health advocates who believe resuming funding for inpatient treatment is best for patients and for America. In fact, 100% of police officers I polled agree that prison is not the place for severe mental patients, where they comprise 60% of the inmates kept naked in solitary confinement cells.

I solute Congresswoman Johnson, a former psychiatric nurse, for introducing H.R. 619, and I hope everyone who is concerned about human and civil rights will support the bill and end the discriminatory practice of punishing Americans for being sick. I pray for another bill to be introduced to address the second cause of mental illness having been criminalized in America – the lack of continuous care and subsistence assistance for released prisoners and former inpatients. Kendra’s Law should be applied nationwide so that acute mental patients will be treated, not punished, for having a common, treatable health condition that requires monitoring and care just as diabetics and heart patients receive.

Inpatient hospitalization was not included under the national health care plan, so it is very important to pass H.R.619 as a separate bill. Please write an email to your representatives tomorrow and ask them to co-sponsor the resumption of Medicaid for psychiatric hospitalization and to institute Assisted Outpatient Treatment progams, which would not only be more fair and humane to sick people and their families, but would also save taxpayers billions each year as our prison rolls decrease.

Thank you, Pam, for this forum and for the useful information that WagBlog always has. I will share the link to the Dr. Manny Show with many people at my Care2 Sharebook and at FreeSpeakBlog, where we often publish mental health news as well as other matters that have to do with promoting human rights for prisoners.

Mary Neal
Assistance to the Incarcerated Mentally Ill
http://www.Care2.com/c2c/group/AIMI

PS Please VOTE for H.R.619 to replace prisons w/ hospitals for acute mental patients. The link below will take you to OpenCongress.org where you can use your voice to say to our elected officials, “We care about the least of these, His brethren: naked, sick prisoners.” (Matt.25:36) http://www.opencongress.org/bill/111-h619/show

While many Americans celebrate the health care reform bill’s victory, please agree that millions of citizens should not be left imprisoned or live under the threat of prison because their health care needs were omitted. Put the “NATIONAL” into health care reform by supporting H.R.619: Medicaid funding for psychiatric hospitals instead of prison cells for mentally challenged people – a change that will save money and restore lives!

Thanks in advance for voting. Please invite others!

___________________________________________________

Dear Mary

I think you know that I was quite ill until starting in 1996 when Zyprexa came out, but not truly until 2005,  when a complete transformation occurred. However, when I relapse, I “relapse good” — as my medical record from the October hospitalization attests, with nearly constant locked seclusion or restraints for 6-8 days etc. Nevertheless, I am with you, though reluctantly, as I also know how terrible the side effects are of some of the older medications are as well as the newer ones, and the horrible state of affairs when a harried or burned out psychiatrist simply rams them down your throat without consultation at least after the acute psychosis resolves and you are able to discuss such things.

When I was in Manchester Hospital, I begged to be put back on my anti-convulsants and the Abilify/Geodon combination that had served me well for many months, believing, with reason, that I was suffering from a flare-up of my neurological Lyme disease, an illness that had always and invariably produced severe psychiatric symptoms. I needed, I knew, an increase of those drugs rather than a wholesale change to the “old drug” Trilafon. But did the doctor listen to me? No, he did not, despite my  ability to say as much to him, my psychosis consisting not of incoherence but of paranoia and command hallucinations to  harm myself in order to atone for being the Devil…I could and did argue with him, vehemently, and steadfastly, refusing to take the Trilafon, until he instituted a standing restraints order for every time I was non-compliant.

These are the sorts of things that trouble me about  forced treatment and/or outpatient commitment laws. It is not that I think people suffering from severe psychiatric illness do not need or deserve treatment, only that the treatments available are not always effective or tolerable. And until they are, I am not sure that the only way to go is only to force medication on everyone willy-nilly, not, at least against their protestations of extreme discomfort. At the very least every effort must be made to find a medication or medication combo that keep the psychosis at bay while making the person as comfortable as is humanely possible…which is difficult when a psychiatrist is saddled with a hundred patients to see in a week. It took Dr O and me six years or more to find  the right combination of drugs, and to titrate them precisely enough to treat my symptoms,  reducing them significantly while keeping unpleasant side effects to a minimum.

There is much about the treatment of the mentally ill that is so disgusting I cannot begin to cover them all here, though your comment is very thorough, which is why I have put it up  as a regular post. I appreciate your links to sites that do so as well. You did not mention one horrific situation: where under-utilized supermax prisons now house “uncooperative mentally ill prisoners” whose lack of compliance or cooperation is due solely to their illness. Though it is well-known that such brutal conditions drive “normal” or reasonably sane prisoners to insanity, can you imagine the brutality of forcing a psychotic individual to reside in such isolation? (Note however that in years past, as you know, isolation and seclusion of disruptive patients in hospitals was also the norm, since “overstimulation” from the outside world was considered to cause their agitation…I have been in hospitals where, in bare seclusion rooms, I was not permitted access to letters or phone calls, visitors or even reading material. As for restraints, they too were inhumane as I was shackled SPREAD- EAGLE, to the four corners of the bed and not, as even then was considered proper, with my legs straight and my arms in position by my side. This treatment moreover was considered normative for agitated psychotic patients rather than cruel in the extreme  as recently as the 1980s in some municipal hospitals in Connecticut.

I  recommend the book, THE DAY THE VOICES STOPPED, by the late Ken Steele, who wrote of his experience as a 14 year old with the savage isolation policies in NY hospitals in the 60s and 70s,  treatment that today seems literally incredible.

Well, I thank you for your contribution to my blog, Mary. You are welcome here at any time. I will post as many of your comments as I can.

Sincerely,

Pam W