Tag Archives: Schizophrenia

Trying to Hold it Together: Doing Art To Save My Life

What the voices tell me to do, set myself on fire...In art therapy I was supposed to just play with the paint, do a blob and a line to get started. I got carried away with the child's paints and this is what resulted...
What the voices tell me to do, set myself on fire…In art therapy I was supposed to just play with the paint, do a blob and a line to get started. I got carried away with the child’s paints and this is what resulted…

 

I also finished a good drawing of a house in Tuscany, Italy and a painting of a child I started a long time ago, which I will post here. (The house drawing is at the framers, where it is being matted because it is too large for a precut mat. I am sorry that I have posted the painting with little faked watermarks on it, but I do not like the fact that people can simply print out my pictures otherwise and not have to pay me for the prints or the paintings…)

Acrylic portrait of African American Child in red watch cap and lavender sweatshirt...
Acrylic portrait of African American Child in red watch cap and lavender sweatshirt…

As for the rest, I am coping, that is all I can say. I try to “fake it till I will be able to make it” — meaning that I do not tell people how difficult it is, most of the time, because that only makes it harder. If I can try to ignore as much as possible what is going on that is all for the best. And when I cannot, I stay by myself and try to deal with it. Or i see someone, my therapist or a person I have hired to stay with me. Or I simply tough it out as best I can. Things could be worse. After all, I am not in the hospital and I have to keep telling myself that! 8)

 

In the meantime, I don’t have a lot to say. Doing art takes all my time and energy, and the rest is spent simply dealing with things and coping. Forgive me. I will be back. I just wanted to post this to allay anyone’s fear that I was back in the bin.

Healing Art as I go down the Rabbit Hole…

TIm, my best Gay Boyfriend, eating watermelon.
TIm, my best Gay Boyfriend, eating watermelon.

 

And now for something really different. Cartoons that tell you about my life these days.

Pam's Having Car trouble
Pam’s Having Car trouble

 

Hope you can make out the text okay…It is a little difficult,. granted. But I tried to photograph the pages clearly as possible.

The next morning she retrieves the car
The next morning she retrieves the car and finds the same problems remain…Why?

 

She's GOt all the dates Wrong
She’s GOt all the dates Wrong and so much more…

 

Fear is ONLY an Almond...the amygdala in the brain is the NUT that makes us nuts!
Fear is ONLY an Almond…the amygdala in the brain is the NUT that makes us nuts!

 

Gargantua is the name of a book, and a character in the book. In it someone says, Appetite comes with eating. It helps me to think about that when I find i cannot find a way to put food enough in my mouth to keep going…I need to eat on schedule if only to keep my strength up.

 

It cannot be Pam Pam Pam al the time. No, he has to start to share of himself or the relationship is off. She CARES about him and it isn't all about HER!
It cannot be Pam Pam Pam al the time. No, he has to start to share of himself or the relationship is off. She CARES about him and it isn’t all about HER!

Meanwhile I am not in a good state at all. Bill wanted to talk about an email I sent him saying as much as the above, but I am much too shaky to be able to deal with it. I just cannot use him to talk TO alone…I have friends with whom we have shared equally all along, and so I do not feel a burden now when I am in trouble. But Bill has ceased talking about himself a long while ago, and I am to blame for letting him withdraw. I felt slighted but felt that perhaps he was reserved and saved his intimate moments for his girlfriend…But no more. I cannot be using HIM as a pair of ears and feel that he shares nothing back. THen I feel guilty and a selfish user! That isn’t fair to me let alone to him…It won’t happen. It won’t be. Not any longer. Hear that, Bill? YOU are an important part of our friendship, as a person,. and if you don’t want to be a person, I do not want a NON-person as a friend.

 

Enough. I feel like I am going to die. And now even the doc doesn’t want to suggest that I take even a sliver of Abilify now that I am off it…So I am really up a creek..Up a creek because I dunno how long I can tolerate this. I smell rot rising inside me, smell it for real., Like my body is rotting from within…Where is it coming from? I brush my teeth several times a day (unusual for me!) but still the rot smell persists!

 

I am not a praying person, but I know many of you are. I am in such deep shit. I will be going to art therapy today, perhaps that will bring some relief. in the meantime, if you feel prayer can help, pray for me…?

 

Thank you , all of you, for hanging in with me. I am NOT a quitter, I am not a quitter!

 

 

Antipsychotics Block Pleasure in Life: It’s All About Dopamine…

It has always been about Dopamine, but they never told us that impeding our dopamine receptors would impair our ability to feel pleasure and the high of "reward" -- No wonder our "negative symptoms of "not wanting to do" so many things! The drugs blocked our native dopamine flow! (Decades ago they knew that it has NOTHING whatsoever to do with schizophrenia, but they persisted in the lie nevertheless...
It has always been about Dopamine, but they never told us that impeding our dopamine receptors would impair our ability to feel pleasure and the high of “reward” — No wonder our “negative symptoms of “not wanting to do” so many things! The drugs blocked our native dopamine flow! (Decades ago they knew that it has NOTHING whatsoever to do with schizophrenia, but they persisted in the lie nevertheless…

To explain the picture/letters above, I was practicing some lettering, briefly, and did not know what I was writing until later…which makes what I wrote all the more interesting a message from my subconscious.  Clearly I agree with almost everyone else I have ever heard from: Haldol is the drug from hell!  About the rest of it, well, Psychiatrie macht frie derives from the sign that was posted above Auschwitz and other concentration camps during WWII, Arbeit macht frei, or Work makes (you) free. So this transposition is meant to suggest (sardonically) that psychiatry will free you in just the same way… NOT!

What particularly sickens me personally is the damage the fiction called the Dopamine Hypothesis  — how an excess of dopamine causes schizophrenia — may have done to the millions of people like me who have taken antipsychotic drugs for decades, unknowingly buying into the medical model and this notion that we somehow had too much dopamine coursing around in our brains.

Life is ALL about dopamine, LIFE has always been about dopamine. Here are some of the human functions to which dopamine is essential

  • movement
  • memory
  • pleasurable reward
  • behavior and cognition
  • attention
  • inhibition of prolactin production
  • sleep
  • mood
  • learning

Why on earth would anyone deprive another human being of the one neurotransmitter that allows us to feel good about things? It would seem to be a diabolical plot, if anyone actually did such a thing, right? And yet, for decades right on through today, that is what doctors want us to do, block the transmission of dopamine to the brains of those of us diagnosed with schizophrenia. They know, of course, that it is impossible, that the brain up-regulates the flow of dopamine in such a way as to thwart at least in part the antipsychotic receptor blockade. Homeostasis will be re-established eventually, even if at abnormal levels due to the drug’s presence.*

No one can live without dopamine, after all. But to understand the necessity of dopamine, and that they have known for years that an imbalance of dopamine metabolism is NOT implicated in schizophrenia, and finally to “grok” that they have nonetheless perpetuated the lie that is the “dopamine hypothesis” just boggles the mind with its enormity. How can we believe anything they tell us about negative symptoms, now, when  as one website informs us:

“Low D2 receptor-binding is found in people with social anxiety or social phobia. Some features of negative schizophrenia (social withdrawal, apathy, anhedonia) are thought to be related to a low dopaminergic state in certain areas of the brain.”

The atypical AP drugs induce a D2 receptor blockade as a matter of course. After all, if you don’t feel any reward-sense from your life and living, your normal dopamine being in an antipsychotic blockade, why would you want to change your clothes, or take care of yourself, much less bother to go to work or even think? But we have been led to believe that such negative symptoms are part of schizophrenia and NOT part of the drug treatments for it! No one told us they were taking away all our incentive to do anything, to even move or think. They told us they were helping us, not hurting us, not destroying our lives!

Even more diabolical, to my way of thinking is the idea that some doctors actually add an atypical antipsychotic onto the treatment of mere depression. Can you imagine how you would feel if you were taking an SSRI (which is ineffective) and which already deprived you of sexual satisfaction or any sexual feelings at all, and then you are given an adjunctive antipsychotic that subsequently deprives you of dopamine? It might add twenty to forty pounds or even more in no time, up your cholesterol and blood sugar, and then deprive you of any feelings of reward or pleasure…Ah but it will boost your antidepressant’s antidepressant activity? J’en doute fortement… I doubt it highly!

What do the doctors care? Either they bought into the drug company’s literature and haven’t read anything independently since med school…or they are on the take themselves from Big Pharma in some fashion and don’t give a damn.

We need to be on the look out for ourselves, because god knows the doctors are not on our sides, most of them. They cannot be. This is their bread and butter, folks esp the psychiatrists and if they cannot prescribe pills, what will they do? They won’t be “real doctors” any more and their prestige will plummet yet again…OH NO! The fact is, they need to learn to do psychotherapy again, or get out of medicine because they cannot prescribe pills that do not work, and there are none that do! None that do reliably and well or better than placebo. In fact, except for the occasional use of a benzodiazepine, and the judicious use of cognitive enhancers for the proper people, and meds for sleep, I am convinced that precious few drugs in the psychoactive armamentarium are worthy of anything but the dustbin.

I think most are ONLY placebos, if they do anything at all. Frankly. And I say this despite having once written testimonials in praise of Zyprexa and other drugs…I dunno, I dunno. How could Zyprexa be anything except a placebo? It is a dirty drug that hits nearly every known neurotransmitter of importance…And yet we do not know how it does what it does…and it has horrendous side effects. That much we know. Since we do not have any reason to think  it is the action on dopamine or serotonin that is the “antipsychotic” activity, in essence we cannot say why or if it does anything at all. ALL the AAPs drugs work on the neurotransmitters in a more or less dirty fashion. In fact the OLDER drugs were less dirty, being more specific to just dopamine!

I reiterate, there is no “chemical imbalance” in schizophrenia, or bipolar “illness’ or in depression. No one has ever proven or shown any such animal ever. Only after patients have taken a drug to “treat” such conditions is there ever an “imbalance” and this imbalance is a direct result of having taken the drug. PLEASE remember this and question your doctors next time they warn you that if you stop your meds your “chemical imbalance” will reassert itself and make you sick again. Ask, “What chemical imbalance and where did it come from? What chemicals and what is the normal level I should have?” I know I know, the doctor will say, dopamine, if you “have” schizophrenia, or “serotonin” if you “have” depression. Lord knows what she will claim if you “have” bipolar tendencies of one sort or another, as so many millions upon millions of Americans these days have been told they now do…But it isn’t true. Not even if they claim it is. There has never been any proof of altered neurotransmitter levels and in fact it is the opposite: drug-naive people with schizophrenia and depression, that is to say, those who have never taken any medication, have been shown to have the exact same dopamine and serotonin levels as anyone else!

As for those who suffer from the condition called “bipolar” — You know, it used to be a very rare condition,  manic-depression. Now, you see “bipolars” coming out of the woodwork everywhere. One used to have to have been crazy-manic at least once, to the extent of having been hospitalized to qualify for the diagnosis, and this made sense as it was restrictive and not a broad umbrella. Given that the illness was considered a very serious one, no one wanted to bring too many within the definition. Now, with so many drugs used to “treat” (ha ha ha) the condition,  and with the help of DSM IV and 5 to bring patients to the drug companies’ financial assistance, you need only complain of a garden variety “depression” to be counted as bipolar…

But remember: 1) the drug companies treating bipolar etc only want to make money, 2) the drugs treat something — a neurotransmitter imbalance that doesn’t exist 3) bipolarity is a fiction that keeps lengthening, like Pinocchio’s nose, with every newly expanded definition…

Think about malaria, a real illness. It doesn’t make more people ill just because it gets redefined. Malaria is caused by a protozoan (injected through the bite of a mosquito), and it sickens people who are vulnerable to the ravages of that organism inside the body…in the same way each time. You don’t “get” malaria more because a financially- interconnected organization of doctors/drug companies decides to change the definition of what constitutes malaria. No, you  get malaria the way people always gotten malaria, largely through not using mosquito nets and other preventive measures…i.e. via a mosquito bite.

Ay, this is NUTS! It should not be so fricking easy to fit everyone into a diagnostic category of mental illness.  Emotions are NOT illnesses by definition, they are normal and necessary, even excessive emotional reactions are quite normal; they happen every day to everyday normal people. Some cultures define themselves by their emotionality! It behooves us to remember this and not pathologize it.

So too, think of this: depression frequently is just sadness, folks. We used to know the truth of the saying, “This too will pass…” There are problems in living that are just problems in living, and I think that some people for whatever reason are simply miserable, without having a mental illness. They would not do better being labeled with an illness or being treated for one. In fact, I have seen people in states of abject misery do a great deal worse under the burden of a label…

I have had it. I do not trust a drug company or a prescription at all, none of them. The foxes are in charge of the chickens and they are up to no good, no good at all. So this weekend I am OFF all Abilify. HURRAY! After that I start cutting out the Geodon…(I have already halved the Ritalin simultaneously with the decrease of Abilify. I had to, I simply don’t need the Ritalin as much, as I am not as sleepy. After Geodon, there is only the Topamax, which I take for seizures and migraines.. Have to decide about that one. I want to be off it, I really do. But can i?**

*Note that although some of these conclusions are my own, I drew most of the research I have based them on from my readings in Robert Whitaker’s fine books MAD IN AMERICA and ANATOMY OF AN EPIDEMIC. I highly recommend reading both of them, which can be accessed through the link I provide at the top of the page in my blogroll. The link goes directly to ANATOMY but MAD can be found easily through there. Good reading! And please do let me know what you think at any time. (Adding this note at a later time, very much the same information can be found in Dr Joanne Moncrieff’s books — a British psychiatrist who came to similar conclusions as Whitaker. Her book on antipsyhcotics is THE BITTEREST PILLS, and her book on psychtherapeutic drugs in general is THE MYTH OF THE CHEMICAL CURE.

**writing in Dec 2017 i have never been able to get off the Geodon or the Abilify, nor the other drugs, though i have cut the Geodon in half somewhat successfully. (I am unable to speak at present, but i do not believe the two are linked, as i dropped the Geodon/ziprasidone dose more than a month ago and the muteness started less than a week ago). That said, i still do not believe they help me. I just maintain that once you have been on these drugs for literally decades as i have been, more or less by force, then your brain changes in response and ends up “imbalanced” and in that sense alone does need the drugs.

NEW ART AND MEDS REDUCED

So she is seeing a psychiatrist....He holds her future in his hands. If he prescribes medications she could be impaired for life..
So she is seeing a psychiatrist….He holds her future in his hands. If he prescribes medications she could be impaired for life..
Gullwing MErcedes 300sl
In the Vimeo video “Poetry in Motion”, a man who dreamed all his youth of owning one of these gullwing 1955 Mercedes 300SL , drives one, everywhere. He speaks of how others trailer theirs, very carefully, but of the ultimate joy of driving his dream car…Why else own it?
The voices i hear are OUTside my head, not inside it…which makes it hard to understand that they are generated from within my brain, even though I appreciate now, at this moment, that they must be….

I am assembling my own private, so to speak, “treatment team” for recovery. This is because it turns out that to go to any facility for real no-drug no medication recovery, somewhere like Windhorse in Northampton, Massachusetts, or Cooper-Riis in NorthCarolina, you have essentially to be filthy rich. Neither place so much as returned my application email (supplication) once they knew I “only” had about — well, let’s just say that I could not afford their fees of up to $20,000 per month, and certainly not for the requisite six month program just to start with! So essentially, you have to be wealthy as Croesus in this country to get any help whatsoever to recover, or you are on your own.

Luckily a little family assistance does permit me to hire a few people to help me — which I know some people are not fortunate enough to do. So I did — I hired an art therapist this past week and I meet with her next thursday! This is something I really look forward to. While I do art daily, I do not usually express my feelings easily or spontaneously doing art. I have to think things through doing art. But i want to do it quickly and find out things or learn to let go and feel my way doing art. And I have never done art therapy, at all so I dunno even what it can offer, except that I cannot believe it won’t be helpful, esp now that I am done to 5mg Abilify as of Saturday. And no abilify at all by the following Saturday, if it turns out that I can tolerate the drop to nothing.

Now, I do take Geodon as well, so I think it will be fine. But we will see. So far so good. But I did say that I would take it more slowly if I ran into problems. Once the Abilify is out of my system, I will wait a little while, then start reducing the Geodon. No sense in waiting too long. If I have no difficulties apparent from the loss of Abilify, why wait? THEY thought i  decompensated almost immediately at Yale New Haven Hospital from having “nothing on board.” My contention is that I decompensated due to the abuse I suffered at their hands, and as a result of their megadosing me with IM Haldol, torture for anyone.

That’s about all the news I have for now. And it is getting late so I’d better go to bed.

Oh, by the way, if the pictures look a bit different, it is because they are done with markers, copic markers for the most part, and not with colored pencils….So you are noticing my use of a different medium.

I Will Not Be Sick Forever…Schizophrenia is Not A Life Sentence!

In reality, my doctor is a woman, and would never sleep on the job..So i wonder what this picture means unconsciously...The following one is turned upside down so you can read the book's title!
In reality, my doctor is a woman, and would never sleep on the job..So i wonder what this picture means unconsciously…The following one is turned upside down so you can read the book’s title!
Title Revealed: Natural Treatment of schizophrenia is what I want and need...But will anyone listen to me?
Title Revealed: Natural Treatment of schizophrenia is what I want and need…But will anyone listen to me?

Dear Everyone,

 

I spent more than three weeks at Yale’s psychiatric hospital in August being tortured, if not by seclusion and mechanical restraints (my PAD restricted the use of those and at least at Yale they listened) then being held down by armed security guards (only their guns removed) and injected innumerable times with a multi-injection cocktail of drugs: Haldol 10mg, Ativan 2mg, and Benadryl 50mg, despite my objections that I have a paradoxical reaction to the last one. They said I could not refuse because I would have side effects to the Haldol without it. Understand this please: They deliberately injected me with a large enough dose of Haldol (without any basis to know I needed any more than the usual 5mg or even 2mg) as to knowingly cause side effects, side effects they knew in advance would be so distressing as to not allow me to refuse medication for them before they even happened!

 

What sort of dastardly drug is this that it hurts as much as it “helps”? Ah, yes, let me remind you, lest you have forgotten, that Haldol is the medication political dissidents in the 1970s were given in the Soviet Union to subdue them after they were diagnosed conveniently with “sluggish schizophrenia,” an illness “everyone” in the West “knew” didn’t exist except in the Soviet political playbook, designed solely for the dissidents. The American Congress, Democrats and Republicans alike objected then vehemently to Soviet treatment measures, calling Haldol injections the dissidents were given nothing less than “torture.” None of the members of congress ever mentioned the widespread use of Haldol in American mental hospitals, though, for that wasn’t torture, was it? “Those people” – American “schizophrenics” need Haldol, they were told by establishment psychiatry, “they aren’t like you or me and don’t feel the same way when they take it…”

 

Now, I ask you, how can a drug torture one group of human beings but be a decent and humane treatment for another group? Answer: It cannot. Haldol IS torture, pure and simple, for nearly everyone who takes it. Just ask people! You cannot label one group tortured by a drug and the other “humanely treated” who endure the exact same effects. In truth the only group of humans who like Haldol are hospital personnel, who no doubt appreciate the fact that it in fact it does subdue patients into docility…usually. This means they have less work to do and thus they consider it an effective “treatment.” (Alas, in my case, I confess I was more likely to respond to forcible Haldol injections by stripping naked, defecating on the floor and smearing feces on the wall as by becoming more pliant or compliant. Why they managed not to see the resultant worsening of my symptoms and do something about it I do not know but they persisted in “treating me” and made things worse and worse…Indeed, I screamed more each day than not, for most of the three weeks-plus that I was at Yale New Haven Psychiatric Hospital this past August. So how good a “treatment” was Haldol? Aside from causing me exquisite mental and physical torture, I mean? In point of fact, despite megadoses, no injection made me more compliant, made me into a “nicer,” better patient, and easier to handle. The Haldol, even when probated and regularly forced upon me, didn’t work to their purposes…I was an impossible patient for most of the three-plus weeks I was there, Haldol notwithstanding. So what was the point? And why couldn’t ANYONE see that they were making things worse?

 

However, that is over with, and what I want now is to tell you that things are going to change, and change radically. I may not have your support in all of it, or any of it, perhaps, but I an attaching the video below as a link  because the book it is related to was deeply influential both on what I wanted and did not get at Yale, and on what and why I am doing what I am doing now. The book, as I have mentioned before is Anatomy of an Epidemic, and the video gives a good hour long summary of it. It is a good place to start if you have difficulty reading  a whole book on the subject or simply would like an idea of what you are getting into.

 

But first of all, the video doesn’t tell you this, “Mad In America” does — Robert Whitaker’s earlier book on the treatment abuses of the mentally ill in America — the foxes are guarding the chicken house. What I mean by this is: the Big doctors, by and large the influential ones who affect how our doctors treat us, are in cahoots with the Big Pharma drug companies in developing and promoting drugs that never worked and basically never had a chance to “work” because they were pushed into production and sales before any real research was done.

 

Maybe you don’t know this but listen: Thorazine was never a real “anti-psychotic” drug. It was a tranquilizer, a major tranquilizer. That’s what they used to more honestly call it. It calmed and tranquilized patients so they were more amenable to hospital treatment or the lack thereof. This was good for all, because the fact that patients were quieter meant that the nurses and aides got to show their kinder, nicer, nursier nursing sides to these “sick” patients, and the “drugged up” patients stopped fighting and finally appreciated being taken care of. It seemed a better situation for all, all ‘round, at least in the big state hospitals where megadoses of Thorazine were routinely handed out to “chill” patient populations into complacency. Less violent/resistant patients meant that the nursing staff could act a bit more like their job descriptors.

 

But now, suddenly, because someone was calling Thorazine an “anti-psychotic” drug as a marketing ploy, as if it treated the actual psychosis itself, they began to believe that it did something “anti-psychotic,” which in fact it never did. Not really. Not if you asked anyone who was treated with it. It never really helped anyone’s core symptoms. It just dulled you so profoundly you didn’t give a damn, or worse, it made you so mad with akathisia that you forgot how crazy the voices could make you feel, because you were literally wild with internal restlessness and other “antipsychotic” side effects and you had to pace all day or rock in your chair or do other “really crazy-looking shit” the doctors told you was just a part of your illness. Once Thorazine was thought of as a treatment drug, rather than as a behavioral modification drug, it changed the game altogether. It changed everyone’s thinking about schizophrenia (and by extension all mental illnesses) in a way that seems to have altered the course of American history itself. Certainly it changed American psycho-active drug-manufacturing for good, though I can only wonder at those involved with the actual design of drugs and how they can do what they do, surely being aware on some level that what they do has no foundation in science whatsoever. Let alone in honest research…

 

What am I talking about? Well, if Thorazine, which was originally used for anesthesia, was really just a behavioral modification drug, really, honestly and truly, and did not, if truth be told, treat or remediate any so-called schizophrenia symptom, then what the hell was all this dopamine hypothesis and research all about in the first and the last place? Because any supposed honest research started with Thorazine’s mode of action on the neuron’s dopamine 2 receptors. Supposedly, said those brilliant researchers, looking to explain how chlorpromazine/Thorazine “treated” schizophrenia symptoms so effectively, the drug works by blocking D2 receptors on the post synaptic neuron (Don’t worry if you don’t know what I am talking about…just keep reading).

 

The point is, Thorazine and dopamine have been inextricably linked for and to the next four decades of schizophrenia research, and all subsequent drug development stemmed from that link. Once that connection had been made, ridiculous and wrong as it was (schizophrenia and dopamine being related, or even correlated, simply was never shown), the stage was set for the “revolution” in brain illness research that has brought us such travesties as “bipolar infants” as young as 2 years old, and the H-Bomb-mushrooming of ADHD cases that threaten themselves to cluster-bomb into more bipolar disability cases than the country can conceive enough SSDI for…And thence to such further travesties as doctors using a brutally potent “atypical” “antipsychotic” (which is in truth no more “antipsychotic” in action than thorazine) like Zyprexa for “off-label” uses like anxiety disorders. Why? For fear of using benzodiazepines, perhaps, but just as often in conjunction with those drugs from hell. Drugs like Ativan and Xanax and Klonopin that are prescribed for people with “major mental illnesses” and the walking wounded as well, both like water, prescriptions that cause devastation in their wake and much more anxiety than they resolve.

 

It seems to me that for every MD who knows never to prescribe a benzo for anything but occasional use and refuses to, there are 40 who say, “take this three times a day and don’t call me unless you have problems”…expecting no calls.

 

But I am side-tracked a bit. Or have never quite gotten to my subject, which as you know is me, my own “illness” and my own future. I do not know frankly what was done to me in the past vis a vis these drugs, that is, what was caused by what. As my good friend Josephine says everyone now says, It is what it is and you can’t change it…So I am me, with whatever I am or have. But  at the same time, i cannot continue to accept the premise that medications are the only and best way to treat me.

 

After all, I take meds every day and you all know that I have ended up in brutalizing hospitals regularly, quite despite this. I was hospitalized just this past August, in fact and this past winter too…So what good has been my taking meds, including 2, not just one but two atypical antipsychotic drugs, if they do not work to keep me out of the hospital? Not much, I venture to say. Not much…

 

Well, but…If they have enabled me to do art and write poetry (when I did that) then they were very good drugs for me indeed. For that is my fear: That I can only do art or write, even if just in my journal, when I take these medications. If so, those would be two very good reasons for me to feel it necessary to keep taking them. I cannot live without something worthwhile to do, and I have no family, no children, no purpose, no career, nothing else but art and writing to live for…

 

That said, what is the proof that my medications are what make me ME? That they make me write and do art? Essentially and absolutely? None at all. And there is much suspicion that the meds can do harm both in the short and long-term. Nothing at all is known about what happens when people take these drugs for decades. I am not sure I want or need to be that particular guinea pig. Now, “Dr Angela” is, as you may or may not know, a psychoanalyst as well as a psychiatrist, so I told her that I wanted essentially what Joanne Greenberg’s “Hannah Green” got from “Dr Fried” (in reality it was Frieda Fromm-Reichmann, the renowned psychoanalyst who successfully treated Greenberg’s schizophrenia) in I Never Promised You A Rose Garden…No promises, perhaps, no rose gardens, but at least the opportunity for cure, recovery, and an end to treatment. And NO MORE MEDICATIONS, WHICH WOULD TIE ME TO HER PERMANENTLY more or less.

 

I am off the first drug, Zoloft, and have been for more than a month. But it is not easy. I am bone-weary and feel like crying every day. Feel like I have never NOT been tired, never not fought off hopelessness and the feeling that if I were told I had leukemia I would cheer, “Finally! Thank god it’s over!”. That’s the truth, people. I sit in my chair, the same one I sleep in, and I sit in it virtually all day long. And though I am not addicted and do not need to (most of you know how easily I quit smoking when I need or want to) I occasionally smoke a cigarette just to ease the pain…which is physical as much as it is mental and emotional. I may not seem depressed to those of you when you see me, because I rarely “let them see me sweat” and would never burden you with me if I can help myself. But there is also the fact that if and when I see you, just that fact cheers me, lifts my spirits, thank god, and is a rescue and a blessing, so thank you for that much! The nights are hard, but sometimes the days are harder…Nevertheless, Dr Angela has agreed NOT to speak to me of going back to the Zoloft, not unless I ask for it, because she understands that I want to tough it out, and that i believe that antidepressant drugs cause more depression than they cure. I believe if this is a relapse it is solely or largely because I started taking Zoloft again in 2007, when forced to at Mt Sinai, even though I told them I was grieving Lynn L’s death and because of Joe C’s illness and they ought to let me grieve! If I had been taken off it promptly, or never put on it, maybe I would not be such an easy prey to despondency now.

 

Nevertheless I am going to go on the record of the past predicting the future, and NOT take Zoloft (as of now) and “get through this somehow…”  because despite everything, I haven’t died yet, not of despair, and while i have done a lot of damage to my body, I have managed NOT to kill myself so far…Chances are, then, that I will not. Of course the future is unknown, but all I can say is that I do not want Zoloft or any AD drug at this moment, and can take the pain.

 

I have cut down on the Topamax, to 200mg but because of recurrent migraines need to keep that where it is for now. The next drug to go will be Abilify. I would rather we stop the Geodon next, but I do not think I can tolerate taking Abilify sans Geodon — not without being incredibly irritable — whereas Geodon without Abilify basically does nothing for me. A steady reduction, not too slow, but not so rapid I cannot tolerate any symptoms that develop. The whole point, in the end, is that should I develop symptoms (and that is not a certainty) we are supposed to be able to deal with them in therapy and not go running to the hospital or back to some drug.

 

(Okay, this is the point in the argument where even I start getting nervous. But I am determined to do this…I want it, I want it, and I need to try it ONCE in my life before I die. I need to know what I know, what I can know about what I need and do not need in terms of psychoactive medication, if that is even possible… Some much depends on placebo effects you know, and on influences of that sort that I wonder if any of it can be sorted out, and how much is going to be sheer determination?)

 

Oy, it is getting late, or I would continue. But I need to sleep and so do you. I am certain there is much more I ought to have said or explained and did not. Feel free to ask questions or query me about your own concerns if you have them…I am open to any thing, except anger.

 

Thank you all for your love and concern and if for nothing else than for simply being there to listen and read this.

 

 

Robert Whitaker’s Anatomy of an Epidemic video:

http://www.youtube.com/watch?v=VgS79hz1saI

 

Love,

 

pam

 

 

Today’s Art Journal Pages:West Farms Mall: You are Here…PLUS

Near the Apple Store, sketching all day at West Farms Mall, West Hartford CT.
Near the Apple Store, sketching all day at West Farms Mall, West Hartford CT.

 

Sketch after Mary Frances Berry Phd. Ballpoint and Colored pencil (from television image)
Sketch after Mary Frances Berry Phd. Ballpoint and Colored pencil (from television image) 
Otheriwse Known as Pammy but trying to be known as Miss Wagner, so the boundaries remain professional, even if they never stay firm and strong.
Otheriwse Known as Pammy but trying to be known as Miss Wagner, so the boundaries remain professional, even if they never stay firm and strong.

 

Despite the MALFUNCTION picture above, there was nothing at all wrong with my ipad…I simply didnt understand the three finger tap function. But once i did, all was  well. And the geniuses at the Genius bar were blessed again. I left to do the drawing of the West Farms Mall, rather than waste the 25 minute drive it had taken me to get over there.

 

That said, I need to add that I did one thing this weekend that Martha, my youngest sister picked up on immediately and knew at once was the wrong call, so to speak. She is an emotional genius of the highest order, and I dunno how, but somehow wrote me a text message that gave me permission to solve the problem…

 

To make the story clear, let me explain that it has LONG been part of my ethic that if I treasure something, especially a THING, I make a practice indeed a habit of giving it away. This is in part so I do not get attached to things, and so that I am not ” allowed to have any particular beloved items” that I need too much or covet too much. A form and practice of self-denial that runs very deep and started when I was remarkably young. I won’t go longer into this practice now except to add that as I wrote in my art journal on one page, one summer a few years ago, I took my very first vacation that was not a “hospital vacation” but was instead a planned stay at a Arts and craft camp called Snow Farm up in Florence, Massachusetts, where I signed up for a metal jewelry course. I already knew how to do the basics, but what this course promised was to teach sawing and riveting and soldering of metals, something I could not do at home.

Martha, who is five years younger than I, lives very close to Snow Farm, and without her support I never would have survived my weeklong stay. Partly because it turned out that I was much too paranoid to eat in the dining room, so she supplied me with enough food to make do with “canned” that is to say mostly fresh and decent food in my single room in the sleeping quarters. Late at night I would creep down to the emptied dining room and make myself a large PB sandwich to supplement these as well, from the supplies that were left out at all hours. But except for the one time the APRN who was then the manager of Snow Farm actually came and got me for supper and the other time that Martha also went with me to eat, I made do alone…

An equal hardship, one I am less able to explain, is that during the entire weeklong course, no one in the class of mostly women, more or less my age, spoke to me. They were a chatty bunch and talked a lot among themselves, but not a person said a thing to me, except I  think one woman, towards the end of the week, offered the use of her tools or something, which became the occasion of a final breakthrough. But for the most part it was a lonely awful time.If it hadn’t been for the teacher herself, Abigail, who spent time with me (she knew my background from my application). I’d have withered from sheer isolation, both self- and other-imposed.

The final hardship was that I was very thin at the time, and using a metal saw required that one hold it against the chest wall while tightening any replacement saw bands and at other times as well. For some reason, I kept breaking my saws, which were delicate enough that if you twisted it while sawing a copper sheet, it could snap in a second. But holding the saw in a vise against my chest wall was simply impossible: It caused me exquisite physical pain, and I could not withstand the pain long enough to replace a single blade. So I had to give up learning to saw, and thus never learned to rivet either. Anything that involved the saw was simply beyond me. Either nobody observed the problem, or all decided that it was not worth coming to my aid. In any event, I was left with no alternative but to do the only thing I was able to finally do: to solder silver rings.

 

Yes, when it turned out that I could with ease hammer silver half-round sterling into a ring shape and  solder it together into a permanent ring, and no one placed a limit on how many I made (since we paid for silver materials as we went along) I simply made silver rings for the rest of the week. Then the one woman who was semi-friendly with me gave me a few sterling silver pre-made bezel cups that would hold a 3 mm cabochon, were I to obtain them. And the teacher showed me how to solder the bezel cup onto a couple of my rings finally as well, (I could never learn to make my own bezel cups because that involved sawing…)

I left Snow Farm with about ten rings, two of which had soldered-on bezel cups. Some were big enough for men, the others were varying women’s sizes, but all were 100% sterling silver. None were anything mind you but amateurish, but that mattered little to me or anyone I gave one to. No one knew the difference, and if I did, it ceased to matter. I ordered little cabochons of grade A lapis lazuli, the lovely blue stone that is so famous, and managed to secure two of them into the two rings with bezel cups on them in a fairly decent if untutored manner (no adhesive used, that much I was proud of).

 

But of course, one of these lapis lazuli rings was in due course given away to a friend who was on and off not a friend. and who verbally abused me in such fashion that it was from her that I learned the awful language and names that I called the nurses and aides at Natchaug and Yale. (I hate the fact that I even have the c__nt word in my working vocabulary. I never did before this friend who is no friend of mine used it on me…But once heard as an name-calling term of verbal abuse, it became “valid,” it became part of my language…much as I wish it had never. And now I confess that when enraged at the people at the hospital, but ONLY then, I call them c––nts and variants on the terms rather freely, because I know what a terribly word it is and what effect it will have on them. (Chip my brother roared with laughter when I told him I called the single nurse restrained me for walking away from the quiet room at the IOL a “snarky little c––nt” and praised me for being able to laugh too. but in truth  I wish I did not even have the word in my working vocabulary at all. I would prefer a lack of insults to use on people to being able to hurt anyone with this word…)

 

Now this “friend” is out of my life and I have the single ring left,..my single remaining treasure from that troublesome perfect vacation.

 

But what happened at the end of that vacation? Well, the last night, we were told to make something for the camp auction and so I brought earring making equipment and starting making a slew of those, and that, plus the fact that I’d brought over  a copy of DIVIDED MINDS, finally just to introduce myself (I think the woman who had given me the bezel cups had asked me a question and elicited the fact that I had written two books…wanted to see them). Well, this was what finally broke the ice. And it did it in a major way. People were really interested, and curious. And they now asked me questions and seemed less scared to talk with me, as if the book’s subject matter somehow explained “everything.” I dunno…Maybe it did and maybe it didn’t. But the last day there , with the auction and the final dinner went fine. and I would say that I “love Snow Farm” despite everything.

 

Which is why I treasure that one remaining lapis  lazuli ring. It means that I actually made something from a situation that could have been unmitigated disaster. I made lemonade from lemons, and I survived a vacation all on my own. SO when I managed to practically beg Martha, my compassionate genius of a younger sister to take this ring from my finger…she was dubious to begin with. For one thing, she has her own two important rings. One is her own gift to herself for surviving Breast Cancer…and it is her most important ring. But I practically made her take my ring from me. I think I have done this to her before…And she didn’t want to take it then either….She KNOWS things, this wonderful sister of mine, and either it is in part that she has these other rings of her own, or that she has inklings about my propensity to give my treasures away to others (I love)  she is not and has not been a willing taker of my ring  on either occasion.

 

What a good egg, This night I received an email from her saying she wanted to “trade it back to me” or at least have each of us wear it so she wasn’t taking it from me…But she knew, she knew. I dunno how, but something told her that it was not just ANY ring I made. God knows I have made her things,  and she had accepted them. So she isn’t just refusing to take anything I made. no. I made the papier mache hummingbird JUST FOR MARTHA after all. And in point of fact she knew that I didnt want to part with Christobelle or the Using Klimt collages, but felt okay about taking them as long as she paid me the full price that I was asking…. (Actually I feel like shit, not just giving the collages to her! But that is another story.)

 

But the ring, oh the ring is so different. HOW DID SHE KNOW that the ring was different? It is not that my offer was false. I wanted her to have my treasure. I did. I loved giving it to her. It is just that I also know that I missed the ring, and wanted also to have it too. And in that sense alone I regretted my impulsivity. And the need to impoverish myself and deprive myself just because i had to. WHY? WHy am I not allowed to keep my ring, symbol of so much? Would it kill me to keep it? Would it be such a terrible mortal sin to allow me to keep my ONE treasure? It isn’t that precious, after all. The solder seam is visible on the bottom  not under the bezel and it is a pretty shoddy piece of handmade jewelry. Not worth a nickle to anyone, in reality. Even the lapis cost me all of a dollar or two. So why does it cost me so much emotionally to keep it??????

 

Martha gets it, though. She really did and does. She KNOWS. She knows the real value of the ring is not the monetary value, but what it means to me. And that is why she is uncomfortable keeping it. The ring aint worth shit, not qua ring. It is only worth something as memory and as symbol and then only to me…and to Martha by extension and because of her depth of understanding.

Martha, if you read this, i hope I understood you correctly.  You certainly got me on the dime. Thank you from the depths of even my impoverished dried up little heart for understanding. You deserve a ring far better than any crappy lapis ring I could ever make…You are a sister beyond dreams. Thank you…I really love you more than I can say.

 

 

My Challenge to the IOL: Stop Using Restraints and Seclusion NOW

Well, how did it go yesterday? All in all, I would say it was a very successful meeting. Certainly it went better than I expected, and better than the disastrous meeting a year ago at Middlesex Hospital with Dr Grillo et al. I fear I irritated Dr Mucha a bit at least at first. Why? Because I think he felt defensive and tried to tell me how much he did on my behalf and my mobile facial features (I don’t hide my feelings behind a good psychiatrist poker face) let him know at once that I didn’t believe him. Why should I? One, it was completely self-serving for him to tell me — as if he had been some sort of knight in shining armor behind the scenes — how much good he had done for me, when he let them restrain me day after day for many many hours at a time, and keep me in what he himself acknowledged was on-going seclusion for the majority of the hospital stay. How dare he tell me how much he did for me, and then when I said they “tortured me” actually scoff, “Restraints aren’t torture!”

Ask my brother, Phil, an extremely humane psychiatrist who would disagree, and would rather die than be restrained, but I went one better. I quoted Juan Mendez the Special Rapporteur to the Human Rights Council at the UN who just this past March spoke/wrote specifically about psychiatric patients and how the use of solitary confinement of any duration and any use of restraints, forced medication and forced ECT is torture. He didn’t say tantamount to torture he said that are torture, period. And I would remind Dr Mucha and Mrs. Blair that until you have experienced these things — and I defy you to try any of these modes of your so-called treatment– you have no way of knowing. All you have to do is look at the expression on the face of the woman in the picture I did yesterday.

From the way I was treated, under Dr Mucha’s supposedly magnanimous supervision, at the IOL (depicted in that drawing) anyone could tell that the people “caring for me” did not consider that I was truly human or “felt” their torture in the same way they would have. Because if they had believed that, they never would have done what they did to me, unless they really did deliberately, maliciously want to torture me. I don’t know which it is. Dr Mucha and Mrs Blair say the Donnelly 2 South unit staff are good people who wanted to help me….So which is it? That they didn’t consider me a real person, just a diagnosis and not really human, so they thought I didn’t feel the torture (this despite my exquisitely lucid PAD that spells everything out in detail) they inflicted, or they were actually malevolent and wanted me to suffer? I tremble to have to choose between the two!

Either way, the torture was inflicted and despite numerous calls to Carmen Diaz, the patient advocate, (another name for the Hospital employee who works FOR the hospital not the patient, really) no one, not a soul, came to help me. I called outside sources too, but except for my advocate at the dept of Protection and Advocacy, who is not a lawyer and has little power besides that of complaint, there is not an agency or organization in this entire state of CT that can or would help me. Not a legal aid group or a lawyer besides the court appointed one to fight commitment that would even come in and talk to me about what was happening. I was ALL ALONE, yet Dr Mucha’s knickers got in a twist because I didn’t praise and thank him for all his work behind the scenes on my behalf.

Well, I am sorry, but 1) Dr Mucha is the Director of the IOL and he is IN CHARGE. He did not need to work behind the scenes. He could have spoken to Dr Taylor about her treatment of me at ANY time. If he thought she was not treating me well or using restraints in an unnecessary or wrong-headed way, he ought to have spoken out at once, openly. Period. 2) I needed someone on my side OPENLY. I needed someone to come to me and tell me that they were going to stop this nonsense and get me some real help that no one was going to restrain me again. That they knew my advance directive was meaningful and that things had GONE TOO FAR.

None of that happened. None of that happened. And while plenty apparently did behind my back, I am not responsible for what I was not told and did not know. Though I do appreciate it now that I do know. For instance that Bev, the voodoo princess, who I was terrified of, not because of her voodoo, but because she was dangerous to me as a staff member, having taken an intense dislike to me, indeed such a hatred of me that she was conspiring to kill me…she was removed from D2S unbeknownst to me for as long as I was there. Simply because I had expressed such intense fear of her. That was something I did not know about, but I am very grateful they heard me and did something for me in that regard. Took my fear seriously rather than tortured me with her presence. On the other hand, if only, if ONLY they had told me that she would not be back for the duration, I would have slept better! Why not tell me? For nights I slept fearfully, since I had no way of knowing she would not be on the night shift!

I wish Dr Mucha et al would look into the Open Dialogue method of dealing with psychosis. It will never be implemented in full in this country, and certainly not in hospitals. It is not a hospital-based method in any event. In fact, it is anti hospital and empties hospitals rather quickly. But some parts of it would be eye-opening, such as always including the patient in treatment planning, how that helps bring clarity to even the most disturbed person. How it involves their being NO secrets, nothing hidden, not even disagreements between treaters as to how to proceed. How wonderful it would have been for me to have actually heard Dr Mucha in conference with Dr Amy Taylor et al discussing the use of restraints or seclusion…Do you really think anything would have continued to happen, or that things would have proceeded apace if I had been included in those case conferences about me? I highly doubt it! Oh, if only I had been….I could have told them so much, but of course they didn’t even think to include me when talking about me! How stupid of them, how completely stupid. But I wasn’t a person, just an animal, just a diagnosis.

Anyhow, at the end of our meeting, which did go well after we got off the torture topic, Dr Mucha asked me if there was anything I wanted to end on. I thought a minute and said, “Well, you know, I want to go back to the subject of restraints and seclusion. You continue to use them because you won’t stop using them. You say it is a slow process, that it takes time. But it isn’t a slow process. You cannot stop using them as long as you allow their use at all. All it takes to stop using restraints and seclusion is to STOP USING THEM. Period. Once you don’t have the notion that, Oh, well, we can always use restraints on that unruly patient, so it’s okay, we don’t have to plan in advance about how to deal with her or him if things get out of hand…once you can’t resort to restraints at all, then you must think imaginatively in advance about how to deal with patients and you will find a way. You always do. Necessity is the mother of invention.”

So that is my challenge to the Institute of Living. Stop dillydallying around and pretending that you are reducing the use of restraints and seclusion. Don’t tell me that you are only using them in the geriatric population to reduce falls, because that is not true and that is not really the sort of thing that I am talking about and you know it. You don’t use seclusion and restraint to reduce falls for “an hour” anyway…THree times a week is not a reduction. Once a year is a reduction! But I want you to NEVER use restraints or seclusion again. I want you to understand that to restrain a patient or to use a show of force is to torture someone. Get this one thing straight, to deliberately frighten a patient with a “show of force” is an act of  terrorism and has no place in a hospital. (In a prison, maybe, though I would argue against treating any human being like that even in prisons…) And when you torture someone esp a patient who is already suffering and frightened, you make her or him worse, sicker and likely to be MORE violent and less predictable and traumatized, with the subsequent behavior that is known to result after trauma. NOTHING good comes from treating a patient with violence.

I don’t know if the IOL will listen to me, a nobody, a nothing worth less than the paper I am printed on. Not worth a red cent or a paper nickel. No lawyer gives a sh_ t about me, I am not worth their time or effort because I am not worth a stinking dollar. So why would the venerable IOL pay attention to anything I have to say? (I am not stupid for all that, but genius IQs are a dime a dozen, alas… and Mucha and Blair too are no slouches, even if they persist in the delusion that to treat patients with violence is acceptable, and not torture, really.)

LISTEN to ME, LISTEN TO ME! I know what I am talking about. if you don’t you will continue to cause more harm than good. If you do, you will break new ground and start a revolution that cannot but do good. That’s all I have to say.

In 4-point Restraints for Disobeying the Rules at the Institute of Living, 2013

Look at the Caption and the Sign on the wall, both are important! This really happened...
PSYCHIATRIC PATIENT IN FOUR-POINT RESTRAINTS
A study in perspective...The tin foil on the wall didn't come out as well as I wanted it to, but the rest is okay..I hope...
A study in perspective…The tin foil on the wall didn’t come out as well as I wanted it to, but the rest is okay..I hope…
Study in pencil of plastic container of doodads
Study in pencil of plastic container of doodads
Study in pencil of plastic container of doodads
Study in pencil of plastic container of doodads
Bearing the Elephants is a spontaneous inkblot drawing...The black spots were inkssplotches that stimulated the drawing.
Bearing the Elephants is a spontaneous drawing…The black spots were inksplotches that stimulated the drawing. I think if you click on the drawing you may get more information…

So that is all I have to post today as I have too many errands to do before my meeting at the Institute of Living. Wish me luck everyone! I don’t expect much from them, I must say. Not much at all, after all, no one is going to acknowledge any wrong doing, much less apologize or even want to improve the situation. Not as at Natchaug where at least they gave lipservice, though it turned out to be lip service ONLY…to wanting to make Natchaug a better place. (Yeah, it turns out they — THe MFs at Natchaug Hospital who said they wanted me to speak — were just stringing me along, never did have any intentions of having me back to speak to the Medical staff, just mollifying and mollycoddling me as I sort of thought they were…Dr Deborah Weidner, the Natchaug Hospital CMO, is a politician as much as a psychiatrist and has to be, right? NO…but that is another subject altogether. I won’t be going back to Natchaug ever again either , not as a patient, as was understood. They don’t have a doctor who will see me, so why would I care about helping them improve? I did care. I do care about all their other patients and I care about their Mental Health Workers, who were the one group that really did do their jobs…and most of the nurses too…But the problem is the Admin of Natchaug doesn’t care, and the senior nursing staff is burned out and problematic…But I am not going to go there. Because THEY DON’T CARE that I care!)

Anyhow, as I said, I have errands to do and I guess I should maybe wash before I go to the IOL, seeing as how I haven’t done so since my trip to NC…It might be  a good idea, though a real drag. I hate it…I hate the very idea of getting under the running water and getting wet is such a hassle. But gotta keep up the appearance for today! After that, who gives a damn…

Okay, so thats it for now. I’m outta here. Thanks for all the FB support, guys. I will let you know how it goes.

Open Letter to the Director of the Institute of Living, Dr Theodore Mucha, and Ms Ellen Blair, Director of Nursing

Dear Dr Mucha and Ms Blair,

Forgive me if I must read this instead of simply speaking extemporaneously, but while I may seem collected to you, inside I’m shaking. Indeed, every time I recall what I recall, or reread the nursing notes about what was done to me this past winter here at the IOL, I start crying. I need to stay in control in order to retain some credibility and so I have written this out in advance in order to make sure that happens.

Thank you for meeting with me today. Ever since I was discharged from the IOL in February, I have felt the need to come back here to speak to someone. Yet because of trauma-induced amnesia, it is only now that I have acquired my records and learned the details of what happened that I’m finally able to do so. But at the same time, I wonder why I bother, since it is not as if I expect you to do anything or say anything that will make a difference. You won’t. You can’t. No one ever does, not even when faced with the reality of the most egregious abuses.

 Before I say anything further, I want you to know that I believe that I have been harmed by the treatment I received on Donnelly 2 South, and that what the staff did to me was not only unethical and cruel but that it crossed the line into illegality more than once. I was told to assure you that I do not intend to sue or cause trouble. I do not, not at the moment. However, if I don’t feel that I have been properly heard at this meeting I may in fact file a formal complaint with the Department of Justice. For now, I just want you to listen carefully and hear what I have to say.  When I am through, if you are so inclined, perhaps we might discuss ways in which things might have gone differently and how they might change in the future, for others even if it is no longer possible for me.

Please understand that I know I was a difficult patient. I was loud and upset and hard for some staff to deal with. That is precisely why my Psychiatric Advance Directive was written out the way it was, and why I made my medical and psychiatric history online so available. When ill, I am frightened and paranoid, which makes me easily roused to irritability and hostility. I know this, from a distance as it were. But knowing this now does not mean i was in control of my behavior. I am by nature neither temperamental nor prone to temper eruptions or throwing things. In addition, I am extremely modest, hardly one to disrobe or urinate in public. My friends and family have at times variously labeled me  “stoic” and “peacemaker,” which should tell you a lot. But that I did all these things on Donnelly 2 South both horrifies me and concerns me because these behaviors point to something going on distinct from psychosis: they point to abuse and trauma.

Let me make it very clear that I have behaved in such outrageous ways before, yes, but only in response to extreme circumstances – as when i was subjected over and over to restraints and seclusion in a horrific and sadistic fashion at Manchester and Middlesex hospitals in 2009 and 2010. It is too bad that when Amy Taylor took it upon herself to violate my HIPPAA privacy rights and investigate my previous admissions, without asking my permission (which I never would have granted) she failed to make the connection between their abuse, and my subsequent behaviors there…It turns out all she drew as a conclusion was that if those hospitals could use restraints and seclusion ad libitum, well then, so could she. It didn’t seem to matter to her that in 2009 and 2010 those measures not only didn’t work, they made things worse when Dr Taylor followed their examples, the same results ensued, just as my PAD predicted.

I was admitted to Donnelly 2 South, and I came in with the very detailed Psychiatric Advanced Directiveas as I said. I made it very clear that my online electronic medical record  was available. It included documents such as my narcolepsy diagnostic consult and special documentation proving my need for a higher than usual dosage of Ritalin, written by my former sleep specialist who was also my psychiatrist from 2000-2009. Included as well was a letter she wrote to my present psychiatrist, Dr Angela Cappiello, explicitly stating her conviction that I do not have a personality disorder, borderline or otherwise, and never did.

According to Dr Sanjay Banerjee he read every page of documents that I brought with me. That is what he told me. Moreover, when he spoke with Dr Cappiello, he brushed off my concerns about anyone misperceiving me as having a personality disorder. My brother, Philip Spiro, MD, himself a psychiatrist brought the same matter to the fore again when in discussion with Laurie Denenberg, but her response was much the same: Personality disorders are not a part of the picture here. We intend to honor her PAD. We are glad that she has had the foresight to prepare such an document. If this was so, then how did it come to pass that Amy Taylor wrote on my discharge summary that I have a “long history of Borderline personality disorder” and herself diagnosed “Personality disorder NOS with borderline traits”? I was being treated for four weeks for an active psychotic disorder. She would have no way of knowing whether or not I had any personality disorder, given the axis I diagnosis and you know it. She did too.

Dr Mucha and Ms Blair, you were not there on the unit or in the quiet room with me, so were you even aware of what happened half the time? Did you know for example, that on Februrary 6, I walked away from the quiet room, strolled down the hall, looked out the window and slowly retraced my steps back to the quiet room. But when I arrived I I was confronted by a cohort of staff who proceeded to 4-point me, even though I was quiet and put up no resistance? Not wanting to give them any reason or justification, I passively lay down on the bed and placed my own limbs out for the restraint cuffs, saying, (I quote my journal entry made later that evening): “For shame. You ought to be ashamed of yourselves. I am not and never was a danger to myself or others.” Their response was “ You refuse to follow directions so we do not know what you will do. This is not punishment, Pamela, this is what your behavior brings on every time.”

Were you aware that they always restrained me, spread-eagled, so tightly I couldnt move a muscle? That they never permitted bathroom breaks or even let my hands free to eat? That I would fall asleep rapidly after three injections  –whether calm or not, it was a routine punishment needle in the buttocks: Haldol, Ativan and Benadryland they would invent reasons to maintain me in restraints even after asleep for hours? Or when I woke, groggy and hardly dangerous to anyone, they would grill me with questions that I could not answer, and they would use my inability to respond as reason not to release me?

Later in the evening on Jan 6th, for the second time that day, they restrained me, for throwing half a graham cracker at the wall. Then, as usual, they left me like that for six hours, even after I fell asleep. In point of fact, I could never earn my way to release from restraints by good behavior or quietly, calmly asking for release. Of course not, because I hadn’t done anything to earn my way into them in the first place. They always refused to release me, ALWAYS, until I literally cried, “Uncle” when they told me to.

 

As to those vaunted shows of force what did you expect? Presented with a cohort of threatening staff personnel I saw one thing: an impending assault.  I know they anticipated my panic; it said as much in my chart. Isn’t that the point of a planned “show of Force” – to induce fear and panic? Why else do it? So why should it be any surprise, when I defended myself as they grabbed me? When they stuffed me into a body bag and were trying to tighten the straps, surely you can understand why anyone would bite the hand of an attacker whose digits came near. It was a matter of life and death!

 

But none of it should have happened. My PAD explained in exquisite detail exactly what to do and what I respond to better than fear tactics and force. in fact, It is beyond me, knowing that one of the admission diagnoses I came in with was PTSD, how you  Dr Mucha, could possibly approve in advance, the emergency abrogation of my PAD and a “just in case they are needed” use of restraints and seclusion. Why not counsel the person asking for this advance “right to restrain” to do all in his power NOT to restrain me and to work with the PAD instead?

 

Here’s what SAMHSA the substance abuse and mental health services administration publication has to say on seclusion and trauma:

 

 “Studies suggest that restraints and seclusion can be harmful and is often re-traumatizing for an individual who has suffered previous trauma…

 

“Further, there is a common misconception that seclusion and restraint are used only when absolutely necessary as crisis response techniques. In fact, seclusion and restraint are most commonly used to address loud, disruptive, noncompliant behavior and generally originate from a power struggle between consumer and staff. The decision to apply seclusion or restraint techniques is often arbitrary, idiosyncratic, and generally avoidable.

 

“Moreover, some studies indicate that seclusion and restraint use leads to an increase in the behaviors that staff members are attempting to control or eliminate.

 

I have been traumatized, and not just by hospitals. I was date-raped three times in my twenties and experienced traumatic domestic abuse by a long-term roommate. The cover sheet on the PAD made very clear that due to these trauma issues, I could not tolerate being secluded or restrained without serious consequences: regression and serious worsening of symptoms. Unfortunately, as soon as the staff saw fit to use physical methods of coercion and control on me, read punishment, from the first time a staff member grabbed me, all bets were off as to how I would behave. I certainly ceased improving, and my symptoms went downhill. Did they really think they were being kind and compassionate? Violence begets violence….

I tried to get help even when on the unit, at least I tried when I was free to make calls or leave my seclusion, err, forced-voluntary time-out two-week-long stay in the quiet room last winter. I made I do not know how many, but many, calls to the patient advocate office, but the sole time anyone made contact was when Carmen Diaz came to hand me some paperwork – I believe I was actually in 4 point restraints at the time — papers  I could not read about the forced medication hearing. I needed her advocacy, but she never responded to my panicked calls in any way that was helpful to me. I wanted her help, but she never came by to ask me what I needed. She was less than useful, the fact that I had to go through her, and her refusal to respond contributed to my ongoing panic and desperate feelings of aloneness and depression. No wonder Dr Banerjee tried to force me into ECT.

 

And where did the ECT discussion come from? My PAD states in no uncertain terms that  I would refuse ECT under any and every circumstance. My brother would be my conservator if Banerjee had sought to go down that road, and he would never have made any decision to counter my wishes on that subject. If Banerjee really read my PAD, he would have known that, and you too. Because he implicated you, you know. He told me that “Dr Mucha and I have made the decision to force me to have ECT.” Oh, I know, the chart talks about having “discussed the possibility of ECT with me” but that is not how it went down. I recorded the conversation in my journal directly after it happened and Dr Banerjee presented it as a discussion that you and he had, and a decision that you and he had come to, not one that I was privy to. And he presented it as one that I had no choice in.

Nevertheless, let me ask you this: regarding ECT and my so-called depression, were you fully cognizant that Banerjee had stopped my 75mg of the antidepressant Zoloft during the first or second week I was there? “Do you really need that?” he had asked, “You don’t seem depressed to me.” Obedient, and in any event glad to get off any medication at any time, I shook my head, assenting to the change. I remembered having trouble getting down even to 50mg quickly at Natchaug the summer before, I dared not mention this and frankly believed it had been a fluke, the opposite of the placebo effect in a sense…So I went along with Banerjee’s decision to summarily cut the Zoloft and hoped for the best. At least, I thought, if things go haywire, it will not be due to self-fulfilling prophecy, a doctor looking for symptoms he expects to find and conveniently finding them. And at least he will know the reason.

A week later, instead of reinstating the Zoloft, Banerjee blamed my sudden “depression” on my refusal of Lamictal, a drug I had not taken in months. Now he was applying to force me to take ECT, something I was terrified of, and to have calculated brain damage.

It was this threat, and the brutality with which the decision was handed down, that started the downhill course of my IOL stay.

The very next day, all hell broke loose. When I entered the conference room, I pushed some important notes I needed Dr B and Laurie to read across the table in front of them. They refused, claiming that I threw the papers at them. Instead, Dr B proceeded to berate me, and told me how he had consulted with other hospitals and providers and had read my records against my instructions and Advance Directive, thus violating my HIPPAA rights. Moreover, he threatened me with a behavioral treatment plan that would not permit me to do art or writing unless I “behaved.” I hit the roof, telling him I would sue the hospital and complain to JCAHO, then summarily left, slamming the door, an act that stemmed from feelings of utter impotence, because I couldn’t actually say in words anything more effective.

It could have ended there. I could have been left alone, to cool down and calm myself. But no, Dr Banerjee had to write for stat meds again, and even though I was on the phone and trying to find someone to talk to, to calm myself, I had to be physically dragged off the chair I sat on, away from the phone and brought to the floor in a physical struggle (because they had attacked first, ie physically grabbed me, I defended myself, instinctually). They could have waited for me to finish the call. They could have waited to see if I calmed myself. I was NOT hurting anyone or even threatening anyone or myself  with harm. ALL that I had done, in terms of physical threats, was to throw a lightweight chair at the wall. And that, it was clear to everyone, was intended not as a threat to anyone. Furthermore, it was done and over with. I had left that area and gone to my room. I had then come back and now sat on the chair by the phone, speaking to my interlocutor on the other end. There was no need to pick a fight or encourage a struggle. A wait-and-see policy could have successfully guided the situation to a better resolution not only for the situation at hand but for the entire hospital stay. As the poem by Dylan Thomas goes: “After the first death, there is other.” Once they decided to use restraints, there was no going back. The first time broke everything, So they used them again, and again and more and more freely and without justification but for convenience and punishment.

Back to Feb 6, after sleeping for six hours, I was taken out of restraints just in time for a visit from Dr Cappiello. Observed by my 1:1 staff member, I could barely whisper and dared not tell my outside psychiatrist the full extent of the abuse that had been happening. Nevertheless, she took one look at Dr Taylor’s behavioral treatment plan posted on my wall, and told me that it would be impossible for anyone, even someone who was well, to follow it to the T. She was so worried about me, and about my ability to complete the requirements, even for a “mere 24 hours,” that she intervened. The next day was the single day that Dr Taylor planned to be out of town, so Dr Cappiello asked Dr Mehendru to evaluate me for discharge, telling her that she feared a power struggle had been set up that I could never win.

 

When Dr Mehendru came to see me, at first I was angry, as the chart indicates, thinking she was just another Taylor flunky, preparing to use more restraints and seclusion, But when she asked if I would like to go home, I took one look at her, saw sincerity in her eyes, and burst into a smile, ready to say yes to anything. Miraculously “cured,” I left the IOL that very same day, less than 12 hours after being released from 4-point restraints and not 4 hours out of seclusion.

 

However, I was not well.  And within two weeks time, I was back in the hospital, this time to be admitted to Yale New Haven Psychiatric Hospital, via their emergency room. Over the next 3 weeks I experienced an entirely different kind of care. At Yale I did not find a staff ready to fight or try to seclude or restrain me. This staff did not need their day to be hassle-free with drugged and cowed patients. Instead, they were trained to remain tolerant, calm and compassionate in the face of sometimes very trying circumstances. It worked. Even when I screamed and yelled and swore, they countered with compassion, and lo, I calmed, no brutality needed, not even IM medication. They had no need or use for cruelty at YNHPH. I felt they sincerely wanted only to understand and help me heal.

 

Appreciating the shock and trauma of my IOL stay, each staff member I dealt with did everything in his or her power to prove that hospitals do not have to be brutal or abusive. At the IOL they pretend to use “best practices” but in truth it consists only of coercion and control. Treatment at Yale was in fact the “best practice” possible, and it consisted mostly of being consistent. Consistent in being patient-centered, trauma-informed care, consistent in being not cruel and uncaring, consistent in being humane to each and every patient, consistent in extending a compassionate hand and heart to every patient and reacting in a different and more constructive fashion than did the staff at the IOL (or at Middlesex or Manchester etc).

And you know, though I was still the same person with the same problems, loud and angry at times, even “violent” to property in my frustration, and still psychotic, they never responded with a show of force. Why would they? At Yale it would be absolutely anathema to deliberately frighten a patient. What would be the purpose in that, they would think….  They also never showed up at my door with forced medication or pushed me into a seclusion room or strapped me down in punitive 4-point restraints, or any of the other ill-advised responses that my PAD  explains are the worst things to do to anyone who is struggling, scared and paranoid. In point of fact, Yale Psychiatric Hospital’s Washington Square unit does not have a seclusion room. They also have a “restraints-free” policy, so they didn’t use those at all either.

The IOL on the other hand with its “We only use restraints and seclusion if we have to policy, restrained me countless times, and for many more hours than was even legal. When I woke up that last morning I spent there, the room opposite me was occupied by yet another person in restraints! That is because, you know, once you allow a staff to use restraints a little, it only takes a little to use them a lot.  And once you sanction the use of restraints and seclusion at all, it is only time before someone abuses them and abuse becomes the norm.

 

Some final points:

CMS regulations on use of Restraint and Seclusion

 

 

Restraint or seclusion may only be imposed to ensure the immediate physical safety of the patient, a staff member, or others and must be discontinued at the earliest possible time.

 

(ii) Seclusion is the involuntary confinement of a patient alone in a room or area from which the patient is physically prevented from leaving. Seclusion may only be used for the management of violent or self- destructive behavior. This means that IOLs definition of seclusion as being kept alone in a room to which the door is locked is wrong. I protested that I had been secluded all along, for a good two weeks before they instituted formal seclusion. I was not violent or self-destructive, and certainly not imminently dangerous to self or others…NEVER was anyone in immediate physical danger.) Yet you allowed them to abuse me and seclude me because I was loud and made people uncomfortable…Instead of dealing with me, you let them torture and punish me. WHY? WHY? Why? I want an answer to this question.

“The highest price of all is the price paid by the people who are restrained: their recovery is stalled by a practice that can disempower them, break their spirit, and reignite a sense of helplessness and hopelessness…” from Recovery Innovations

 

Worst of all, using restraints doesn’t work to make either the patient calmer and safer or the unit a calmer safer environment to work in for staff. In truth, things only go from bad to worse once you restrain an unruly patient…Violence only begets more violence…Moreover, when I was at Natchaug Hospital, i was told by one of their mental health workers that she had wanted to experience the process of being four-pointed herself so she could identify with patients. She was told no, because as the aide informed me, hospital administrators feared it would be too traumatizing.

 

Where do we go from here? Well, I will never return to the IOL; inflexible IOL policies have no safeguards in place to properly protect patients. I came prepared, Dr Banerjee said so. And yet it did me no good, because all the preparations and advance directives in the world do me no good when staff is given carte blanche by their own director to ignore them.

So where we go from here is largely up to you. You can simply ignore what I have written, tear these sheets up, justify all staff behaviors and throw away my complaint as meaningless information. After all, Dr Mucha, you are retiring in a few days, so you can leave all this behind without a care in the world. Ms Blair, even you don’t need to believe my words, you can simply trust the superficial, documented words on the chart, and if necessary, the lies of staff as to what happened. What you don’t know won’t hurt you. But lies they are, and lies they always were, even as they told me what they were going to write in order to get away with restraining me as punishment. The problem is that not everyone was so clever as to cover her footprints, so once or twice the truth was written down and not corrected later. I will show you those pages if you wish to see the evidence I have.

The problem for you is not that I am going to sue you for malpractice, No lawyer is going to take my case on a contingency basis. No one in this country or anywhere in the world cares about a mental patient who was tortured in an abusive hospital situation but didn’t die. I would be worth money dead, yes, but not alive…Your staff knew this and that is why they knew they could get away with it…No, the problem for you is strictly moral, one of conscience. But if you can live with it, then I cannot change a thing.

The IOL could change, it could adopt a philosophy of patient-centered, trauma-informed care, as Yale has done, but that would require changes that would involve every aspect the unit. I doubt IOL administration has the ethical or moral fiber or the political will to do it.  I think you choose to remain a brutal, backwards and controlling institution because it feels easier and you believe it is cheaper, though both notions are mistaken. Sometimes it just feels easier to think mistaken thoughts than to challenge them and learn to think in new ways, absorb new paradigms. This is unfortunate because in the end the IOL would save money and patients would heal with less trauma, if you implemented changes that actually worked rather than resorting to the old ways of cruelty, coercion and abuse.

That is all I have the time and energy to say, for now.

Breaking Icons

My second human sculpture, Dr John Jumoke, holds a prescription pad that reads,

Rx: Art, Poetry, and Music.20121223-000808.jpg

I think that is a pretty good first line defense for much of what ails the human condition. That and a good dose of empathic understanding from people who eschew employing violence, sarcasm and undermining skepticism in their efforts to help others. Too often people who are diagnosed, as I was, and still am, with “schizophrenia” are rushed into treatment that degrades and humiliates, even as it inflicts terrible effects, not to mention side effects…all without curing the so-called illness. I am not convinced that a person with “schizophrenia,” given the simple luxury of TIME, and a safe place with really good, caring, kind and intelligent people who know how to help without hurting her or him, would not heal better and more effectively than with any of all the so-called miracle anti-psychotic drugs our billion dollar medico-pharma industry has foisted on us. And I say this even though I still feel that Zyprexa was a “miracle drug” for me, once upon a time, (though also the miracle drug from hell…) and that it gave me a life I had never known before. I say this even though I take Abilify and Geodon and do more art and writing than I ever have…I say this even though I am better now than I have been in decades. I think the drugs are only fixing problems that the system largely caused. And had I had the chance, way back when, I wish I had had the chance to fight back without them…

If I could do anything to fix the mental health system, in Connecticut or this country or the world, one small thing, it would be to end ALL use of seclusion and restraints, period. Violence begets violence, in all cases. In ALL cases. In fact, get this, I would change the prison system as well, so that punishment qua punishment would be a thing of the past. Punishment is only a form of revenge and it does nothing to change a person or make them better. It only makes society feel better the way a bully feels better when he or she smacks a victim upside the head for smiling lopsidedly. I mean this. Sure, people can do very bad things. Yes. And certain people may be so damaged that they are too dangerous  to safely release into “normal” society. (I maintain that this is largely because of how we, as a society, treated them, either at large or in prison.) But prisons and penitentiaries, especially in America, should be seen as an abomination on God’s green earth.

They say a society is judged by how it treats its dead? Well, I think we are judged by how we treat our prisoners, and if so, we will be judged poorly indeed for we treat our prisoners like hated animals…Not like cats and dogs that is for certain, nor even like horses…No, because we generally treat cats, dogs and horses well. Rather, we treat prisoners like vermin, like roaches…and then we blame them when they behave like the vermin they have become!

Have I gotten off the subject? Well, some mental institutions are largely prisons to their populations of involuntary or coerced patients, and most patients, involuntary or not, are cowed into doing as they are told for fear of the consequences. So to a degree the prison metaphor is valid. But if you have been restrained and secluded, brutally, and for hours upon hours, for many days, as I have been, the notion that you are a prisoner becomes more reasonable. That said, I will advance yet another idea: that bad behavior should be treated, not punished. Yes, I mean that. We should treat the person guilty of repeated criminal offenses as if he or she has a treatable behavioral disorder, and not punish them.

I know this will earn me some outrage. But think about it. What good does it do to punish a person repeatedly? Does it do anyone any good to torture that person with “the hole” or with repeated cell extractions and mace in the face? Clearly it doesn’t rehabilitate them or teach them the ways of kindness. It only makes them worse, and in our system an in-prison offense can add years to what started as a short sentence. So we create hardened criminals inside our prisons. I ask again, what good did it do?

But if instead we took that person, guilty of an offense and treated them as if they needed help — help learning how to behave better — and all that might entail, perhaps we might end up not only with someone ready to leave the institution at the end of the shorter stay, but someone ready to stay out afterwards! It only makes sense to treat everyone, including prisoners, with kindness and understanding and education, and if you don’t believe this, you should for one reason only: it would cost less money. (Of course, the owners of the private prisons don’t want you to know this, because they MAKE money on all the prisoners who keep coming back or who never get out, in fact there is a whole industry based on keeping as many people in prison, their private prisons, as possible…)

But I don’t believe in prisons either. I think the institution is a nightmare. You put bad people together with one another and what do you get but people learning how to behave worse together! It is a truly ridiculous idea. Analogous to the hospital, which is currently the worst and most dangerous place to go when you get ill (because that is where the most dangerous infections are and are often out of control). In the “old days” prisons were merely waiting stations. Penalties were sure and swift, and brutal. But no one waited for decades in a crowded prison with society pretending that it was humane. Now, we pretend it is..I dunno. Do we pretend anything, or just not care?

Do we care at all that we warehouse so many millions in dead-end lives that only get worse by the day, and then deprive them the more if they manage to leave prison eventually and not return? Oh, we have three strikes laws to put a person in prison for life, but no one gives a damn that there are three strikes against any person who actually earns his or her way OUT of prison. Nowhere to live, no job, no money, and no safety net whatsoever. (Unless you happen to be a former governor of Connecticut, and then you have it made in the shade.)

Enough for now.

Sunshine Story of Schizophrenia Recovery…plus

When I saw at the end of this film, part four, before the depressing note that stated all that Indian law might not permit Reshma to do in her life, how she was making a living by painting, all I could think was, WOW! Go for it! At the very least, she is not being held back by the strictures of disability law and Medicare and Medicaid earning limits, or being forced into a permanent sick role because of same, simply in order to have a roof over her head and food to eat. No, she was lucky enough to have a family that both really and truly took care of her in her worst moments and fought for her in the best sense of the word, and also one that let her go when she needed to fly free. Most of us are not so lucky…alas. I think the support that she got all through her illness played an enormous role in her recovery, frankly. And I dunno how many of us get that sort of community or family support, but I wager that it is not many. I certainly did not. I wish I had, but it was very much to the contrary. Instead of support, I was abandoned entirely, both financially and emotionally. Left high and dry, to such an extent that people who met my parents after the break, never knew I existed, not for thirty-five to forty years. Some are only just learning of my existence now, as they meet me when I visit my mother. They didn’t even know or understand that all along Lynnie had a twin!

But I do not wish to dwell on that, except to say that things did not have to be as they were. And we do not have to live as second class rejects in society, except insofar as we accept that role.  And take it on, along with the disability status and payments that we are told we should apply for at the first psychotic break. I disagree. If a person has a work history (and history is the single best predictor of the future, if anything can predict it) and has shown that he or she can hold a job, then why after a psychotic break should they be told they will never work again and that they should apply for social security disability? Disability signifies Permanent and total disability, that’s what it is for. You are not supposed to get better, and it’s meant to be “for good.” No, it is not impossible to get off SSDI and you can in fact earn your way off it. But how many people do? Not a single person I know who ever obtained SSDI payments ever got off it or ever even tried to do so. The best they did was earn just below the legal limits of what one can earn before they  start counting against your disabled status. Which is to say, they worked, yes, but only a little, and only to the extent that it never threatened their standing as a disabled person.

What a crappy system. Someone a few months back when I was in the hospital asked me why I was so angry at the System, and why I counseled anyone under 50 not to go for disability…and this is why. Because it paralyzes a person into doing nothing with his or her life, it keeps them mired in permanent poverty, and it encourages lethargy and breeds depression and recurrent illness. I believe it does NOBODY any good. Frankly. True enough, I cannot say that I am not grateful as hell that I have had a monthly income for all my adult life, as I have never been able to work an 8-hour day regular job. But if, instead, there had been creative rehab or job counseling and creating, maybe someone would have discovered my artistic abilities earlier in my life and got me going, and using them earlier in a more productive and income-earning capacity.

I was never, and never claimed to be, unable to do anything at all. I simply could not follow a routine of any kind or go into an office or workplace from 9-5pm. Since that made me unemployable in their lights, I was “disabled” and put on the SSI and SSDI rolls. But in truth, while it guaranteed me an income, it also sidelined me for life, because I didn’t have to do anything to survive or even to get ahead. And in fact I was not allowed to get ahead or I would have lost the very disabled status that I now needed simply to qualify for housing and food. It was a terrible catch 22 situation that only perpetuated itself once I was caught in it. I could never get out of it once I accepted the first check…

And it only got worse when I moved into the cushiness of subsidized housing. Now, not only can I not move (it is HUD housing not Section 8 so it isn’t even portable) but I am “used” to a piddling rent of 1/3 of my piddling income. I have stopped knowing how to scrimp and save and live on pennies a day…because I do not have to. Everything is guaranteed here. Everything is safe. But I am suffocating, because I have no life, and no prospects for any change or growth or movement because at age 60 my life is at an end…I will live and die in these measly 2 rooms, living on SSDI and SSI, earning nothing, doing art and storing it away for nothing and no one…What good is that?

That, my friend who wanted to know why disability is such a bad deal, is why I counsel anyone who is not close to retirement not to go the disability route, not unless you want to do nothing and live in poverty for the rest of your life, and are content with a life of watching TV and a strict budget, using food-stamps and coupons. Because it will come down to that, that is, if you have a TV. And lucky you if you have a car and can afford to keep it on the road….If not, think about whether or not you can get rides, because the bus can be a drag when it is raining or snowing and you have a lot of groceries to carry. You better keep the car in tip top shape in any event, because you won’t be buying another anytime soon on disability from Social Security…I dunno about you, but no one I know gets much more than $1000.00/month from SSDI and usually we get hundreds of dollars less than that. One car repair bill can rip a monthly check to shreds.

I dunno what most wage-earning people think a life on disability is like, but it isn’t a cushy life of luxury,  not at all. I haven’t bought or been able to buy new clothes in nearly ten years. (I wouldn’t want to anyway, because I like to buy used clothing and not generate new carbon, but do you really think I could afford on my SSDI check the price of any clothing except Walmart’s, that abomination of a store?) I cannot even afford to get food at Stop and Shop, let alone new clothing anywhere. I buy literally everything used, at GOodwill, or I barter or get things free through Freecycle. Or I do without. The only new purchases I make are art supplies, when I cannot get them at tag sales, or through other outlets. And I do not replace my erstwhile beloved pet Eemie, because I know I cannot afford a cat. You make choices in this world. If you choose to go on disability, I believe they should tell you precisely what sort of life you are choosing. Or give you options so that disability is only one of several equally feasible ones. It ought not be simply: go back to work at the same job, at the same level of stress, or go on disability. That is stupid, especially if one has been psychotic. But it also ought not be, You have been psychotic, and we are certain it will recur, so you will never be able to work again.  That is double nonsense. NO ONE can predict the future, or tell a single soul that a psychosis will or will not recur. Only time will tell, and predicting a good prognosis has been shown to pay off with better outcomes than telling a patient that the future looks dire.

Okay, enough for now. I hope I haven’t been too oldy and moldy-sounding. I’m just very discouraged about my own limited and stagnating life. I do not feel as old as the system is making me behave. I could have a good life for the next two decades or more and maybe even a career. After all, Grandma Moses didn’t start painting till she was much older than my mere 60 years, and she had a long painting life ahead of her. No one told her she should just hide her head in the sand and wait to die. Or if they did, she ignored them and went ahead and  painted and painted. I won’t give up on art, but I am frustrated and feel utterly stymied by a system that has clipped and cauterized my wings.

Finally, this is the large Turtle that I owe Tim, as it looks at present. I am going at it very slowly but surely.

IMG_1105

Too Many Anniversaries and Too Many Memories

Eemie on Bed

One of the anniversaries is my little Eemie’s death last year, at age 17. She was only about 14 in this picture, maybe a bit younger. But she never looked much different from this. Even the day she was “put to sleep” the vet thought she was a very sick 5 year old and not the elderly kitty she really was…She was my all time favorite cat, but i won’t try to replace her, or get another. I cannot do it, and will not try…

Pam and Joe 06 at Lahey

This  photo is of Joe Cornelio and me in 2006, just after he was diagnosed with ALS,  Lou Gehrig’s Disease, which would finally kill him, or complications thereof, two years ago today. I stil miss him dearly.

ERICA Screen that Joe sees

At the height of Joe’s illness, when he was completely paralyzed except for his eyes, and could not speak or move, he was able to use an eye gaze computer known as ERICA to speak with. ERICA registered the glint in his eye and allowed him to spell out each word by looking at the letters of the alphabet, which you can see on the screen in the photo, and then he could ask the computer to speak what he spelled by looking at the “speak” function. It was laborious, yes, but it worked well enough that we could actually have skpye converations by phone when I could not get in to see him in person, and I would set up my computer by my paintings and do some artwork by “videophone” so that he could watch me work while we talked.

Joe using ERIKA

This is  Joe — weird how I never saw the changes in him in life but always saw him as “my old Joe” except in these photos — using the ERICA.

Pam and Joe in HFSC smiling

Pam and Joe, smiling at one another…

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The other anniversary of this month is that three years ago, I was sadistically restrained (the first of several such incidents) on April 24th at Middlesex Hospital, absolutely traumatized by it and have not forgotten it yet. I tried to get redress, and we had JCAHO go in to investigate, but it did no good, because the Joint Commission largely doesn’t care about how often general hospitals use restraints and seclusion on patients in psychiatric units and doesn’t even track their usage. Try and find out about it. It is impossible. They track use of R and S in psychiatric hospitals, pure and simple, that is to say, State Hospitals, and private psychiatric hospitals, but not in general hospital units. So what good is that, I ask you? Most people who have severe psychiatric illnesses (chronic) are not hospitalized in this day and age in private hospitals but on psychiatric units in general hospitals, where the treatment can be tantamount, as I know all too well, to what the UN in March called torture.

Finally I was going to upload a bunch of photos of my tiny apartment but in one fell swoop I erased everything in my iPhoto library, including all the new photos. and, well, that was that! All I have left is whatever was saved in the ipad Photostream, which was precious little when it comes down to it. Stupid me!!

So today is the anniversary of Joe’s terrible death and I am trying not to think about that and all the other anniversaries coming up…It looks like it is going to be a bright sunny day here in Connecticut so I will try to take a walk and maybe do some artwork if I can get up the energy to do so…

Schizophrenia Video: UVA and DIVIDED MINDS

This video was made during our “book tour” of 2005-6 after DIVIDED MINDS: Twin Sisters and Their Journey through Schizophrenia was published. I had not seen it for several years when my good friend, the poet Mizzy Hanley, located it by chance on YouTube. I am surprised, frankly by how eloquent my speech is, though I cringe, today, at some of the things I said. How differently my talks today are! In any event, much of it still holds true, though  now I would couch things in somewhat different language, and might not so readily give the voice of certainty to such statements as “I suffer from schizophrenia.” Nevertheless, the comments underneath are certainly encouraging, and if it helps anyone for us to have said what we did then good.

Art from Yale Psychiatric Hospital #3

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This was the third picture I did at Yale. During the three weeks I was there, I often had a difficult time when I heard another patient yelling or getting angry. At one point, a young woman (younger than I at any rate) did a fair amount of screaming and complaining. And I heard a lot of noise that I thought portended or suggested violence was happening. I became very scared, terrified in fact, not because I thought I would be hurt, or that she would somehow hurt me. I am never ever afraid of other patients. My only fear at any time, aside from fear of the staff behavior towards me, is fear that another patient will be hurt or traumatized by staff use of seclusion or restraints or other violence on them.

Christine Simpson, the LCSW assigned to me on my team, recognized that I was panicking, and at least three times that day sought me out and just sat with me, talking to reassure me both that I was fine and that the other woman was fine, whatever was going on. She even came back before she went home to check on me and make sure I was okay before leaving, well after 5pm. I don’t think I ever thanked her enough for her support in the other posts, so I hope this does so. She was wonderful and I think she went out of her way to make sure I was not only “just okay” but that everything was as good as it could possibly be.

I am so profoundly grateful and remain astonished, both, that YNHPH  has a philosophy of patient-centered care, of dignity and respect for the person, and also practices it so well that it doesn’t need to preach anything to the patient at all. You know, I believe the Washington Square 2 unit “advertises” itself online using the words Dignity and Respect, but I did not know this before I wrote my first blog post about yale or went there. I simply understood it from the way they treated me and everyone else. It was also perfectly obvious to everyone who visited me there.

I have donated picture #2, the one with the red bird of fear (“oiseau de peur”), to Yale Psychiatric Hospital, because of Chris Simpson  and Dr Milstein and everyone else on the team and all the aides and counselors on the unit who work so well together.  A huge thank you, to all of you.

 

Schizophrenia Medication: Should I or Shouldn’t I?

This is from a 2011 entry on my About Schizophrenia blog. However I have changed it and updated and added to it, so I thought I would post it here. Dunno how many of my wordpress readers might not have seen the first version at all. I have also added a discussion of Xyrem, my sleep medication to the “mix” as I consider it a “minor miracle” that has been underreported and never before used.

Okay, I admit it, I have had my conflicts surrounding schizophrenia and the issue of medication — whether to take it, when to take it and what, if anything, I will take. In fact, I admit that this remains an issue, though less of one so long as there is a medication that I find inoffensive. But more on that later. First let me address the problem of that conflict itself.

In the “old days,” which is to say, during the 1980’s and early 90’s, I was treated with the so-called “typical” neuroleptics like low-potency Thorazine and Mellaril (in doses as high as 1500mg which left me with an eye problem known as chorioretinopathy, which activated once and could reactivate at any time and potentially lead to blindness…). I was later treated with high potency, lower dose drugs like Haldol, Trilafon, and Prolixin, either orally or by long-lasting depot injection. Although I was compliant with these meds for a while, I eventually found them so troublesome that while hospital doctors insisted they “helped” me, more often than not I would take them in order to be released from the hospital, only to stop them again.

This became a pattern that led, familiarly, to what was called the revolving door in and out of psychiatric units. While I understood this only vaguely, I found the dulling side effects, not to mention the physical discomfort of these medications so terrible that even if not taking them meant yet another hospital stay, nevertheless I often refused — in fact I could not bear to take them despite the psychosis that resulted. Had anyone bothered to ask me why, I would have told them that the drugs’ side effects were simply worse than the illness; they were hell and there were no two ways about it.

All the hospital staff and outpatient doctors and nurses believed that no one could possibly wish to choose “madness” over mere drug side effects, but I was someone who frankly preferred the former to the agony of the latter.

Now, while I speak as if I knew I was psychotic, that is not altogether true. All I knew was that I was being hospitalized a great many times, that I had been told that if I took the pills I was given, I would be able to stay out. I did not at the time believe that I had any illness at all, and did not for a very long time believe it. However, what I did want was to avoid the often brutal treatment of various hospitals, and their use of four-point restraints, sometimes for days at a time, spread-eagled tied to the corners of the bed, in the 90’s , and that was what sometimes persuaded me to take them, not the understanding or agreement that I was ill.

But surely I was not alone in feeling that the side effects of the meds were worse than the consequences of not taking them. There would not be so many people with schizophrenia who like me refused them, if so. Whether I believed I was ill and needed to take medication or not, it hardly matters when the pills I was given caused unbearable pain, or so deadened me, I felt, that my life was scarcely worth living…

I know those meds in particular– the older drugs both lower potency and higher potency, at almost any dose, caused me physical side effects and physical suffering. That alone was enough to make me ambivalent about taking them. What I never knew, and still do not really know for certain, was whether the drugs themselves emotionally deadened me, or whether what I came eventually to appreciate might in fact have been illness after all was the cause of my feeling deadened. Did I lack enthusiasm and passion because of the illness or because of the medication side effects?

Through the early 90s, I was on Prolixin as the least distasteful anti-psychotic, and having been more or less forced to take the long-lasting depot medication, I could not “stop” taking it, not once my weekly injection had been given. Then finally, Connecticut’s Medicaid program started paying for Clozaril, and I was among the first people in the state to try it. All went well at first, and I seemed to be off to a good start. But unfortunately, once discharged to home, “all hell broke loose” with devastating side effects that were if anything worse than anything I had experienced on Prolixin or any other older neuroleptic. This may have been unusual, I do not know, but I had horrendous and immediate side effects: sensations of impending doom that made me afraid of falling asleep; then an inability to swallow even my own saliva; a kind of uncontrollable jerking, seizure-like, while I was conscious; and when I was awakened — nearly forcibly — in the morning, I experienced an unbearable sedation that took hours to wear off…

I gave the drug several trials, but I was not disappointed when I developed a very low white cell count and was no longer permitted to take it. After that, it was back to Prolixin, and back to what had never really lifted, not even with the so-called awakening miracle drug of Clozaril: the deadened feeling. I felt hopeless, as if nothing would ever really work better for me, but then again, why should it when I didn’t really suffer from an illness like schizophrenia to begin with?

My therapist, the one who had tried me on Clozaril so many times, left her practice, and I was shunted to a nurse-therapist at the Clinic, one who took an immediate disliking to me. I felt a similar antipathy for her and so with no love lost between us, it was a huge surprise to me when, after she gruffly suggested I try this new drug, called Zyprexa, that I woke up only a few days later feeling, well, not only awake and better, but awakened. Awakened, alive, even reborn. I could read, I could remember what I read, I could study and I felt enthusiastic about it all in a way that before then I could only dream of.

Oh, I knew that I wanted to feel that way, but it had literally only been a dream or a wish before then. I had been vaguely hungry for this, but until I took Zyprexa, it seemed that I had been completely unable to grasp or fulfill my wish to do any of it. On the drug, I could pay attention and concentrate for longer than I had in decades, and learn things and retain what I learned. I felt that I had a whole lifetime to make up for, and started to make up for lost time. What is more, I was so confident in my ability to read and study now that I had found a drug that helped me, it seemed entirely possible to do so.

Why do I tell you this? Because while Zyprexa was the real miracle drug, a medication that did not so much give me back my life as give me a life I truly never had, it was, as I may have said before, also the side effect drug from hell. As I would soon discover, my weight started to increase almost from the first week, and it kept going up and up, despite my longstanding history of strict weight control and a vegetarian diet. Also, it is a very sedating drug, so that I had to fight off sleepiness that added exponentially to the sleepiness that my narcolepsy had caused for years.

Luckily my psychiatrist soon thereafter was also a sleep specialist; she had no problem treating this with the appropriate drug, Ritalin, and so it was not the problem it might have been, but the weight issue was, and is in fact, one of the reasons I have on-going conflicts over taking that particular medication.

Side effects of any sort remain 1) the major reason I will not take a given medication, and 2) the major reason I do take the medications that I take. If this surprises you, let me explain. First the latter: Of my present medication regimen, the salient ones for this discussion are Abilify and Geodon, and I take them not for the reasons my psychiatrist may have prescribed them, but for their “side effects,” at least as I perceive them. For instance, it was only once I started taking Abilify combined with Geodon — I could never tolerate Abilify by itself — that I found myself able to do art, and to write so fluently and so abundantly as to be unable to stop once I start. In fact, I call these two my output combo, medications that make my creative productivity enormous, whereas Zyprexa is just as literally my input drug, my intake drug, insofar as I can read and absorb information, and also eat, eat, eat.

For the same reason, though, I will not take Zyprexa because of its intensely dispiriting side effect of causing obesity and with it diabetes and and the concomitant conditions that go along with that. I wish I could take it: I miss reading terribly, miss the heady feeling of intellectual confidence and the ability to learn and remember and such.

Unfortunately, despite my early paean of praise for Latuda, I have to admit I have reconsidered it, as I found that though I cleaned my apartment regularly, I slowed down on my drawing and writing, and at the same time had not found myself interested in reading, nor even in watching my usual documentaries…It felt like a kind of straitjacket. I had weathered the psychotic crisis, but after that its usefulness seemed to be limited, and limiting. I agreed to take it, if necessary, in a crisis, but aside from then, I did not find that it helped beyond attenuating the worst symptoms.

Actually, in the two years since i took Latuda that one time, i have come to believe that the drug did little or nothing for me. I think that i simply managed to pull myself out of a bad time by myself… It can be done, and most especially when i am not facing that critical six month vulnerability time. And this was in fact in between the six months – during a period of relative strength. So my sense is that the latuda functioned mostly as a placebo, and that i myself pulled myself out of trouble.

In truth, given my druthers, in a crisis and forced to choose between one hell versus another, I might prefer Zyprexa over Latuda, since the benefit of the first outweighs the complete lack of any positive benefit from the latter. Which is to say, even if both happened to treat psychosis, only the Zyprexa has any positive side effect in addition to that. Latuda only has the negative side effect of strait jacketing me in the process.

The next two paragraphs were in my original post…i keep them as is here only so that i can follow up with a “but now” discussion of how things have changed:

One other “benefit” from taking Zyprexa, discovered within just the first week or so, was the realization that a medication made a difference, a huge difference. The conclusion I began to draw from this was not so sudden, and it was reluctant, but eventually I had to decide that perhaps, if a medication made such a radical difference, and a medication, Zyprexa, supposedly “treated an illness called schizophrenia” perhaps, whether it was schizophrenia or not, I did have some illness. Surely, if this medication, which did not help most people, made such an enormous difference for me, it must mean something…

I was reluctant for a long time to answer that further, and still cannot say a lot more without cringing. But if indeed there is a real entity, a real singular illness of schizophrenia, as opposed to a syndrome, and if Zyprexa really is a treatment for it, an effective and appropriate one, then god bless it, I will accept the diagnosis. I might still refuse to take the drug, but I would accept that I have the illness and continue to say that Zyprexa was the best miracle drug from hell I ever took!

But now i still cringe and cannot use the word schizophrenia without wanting to say, Psychiatry is an art of making an opinion…and even more often of making judgments. Two worse things to base a field of so-called medicine on i cannot conceive. Yes, Yale diagnosed schizophrenia, and did NOT decide to diagnose a personality disorder on top of it, which was, truth to tell, a huge relief*, because I KNOW that it is only the abusive hospitals that do that, and they diagnose an Axis II disorder largely to blame the victim, blame me for PTSD behavior that they induced! You simply cannot seclude or 4-point a vulnerable patient, viciously and brutally, and expect that person not to respond with traumatized behavior, which is predictably unpredictable…But can be described and has been.

In any event #1 how interesting that Hartford Hospital, in the 90s, when it was independent of the IOL, and often kept me for months, never saw any personality disorder in me when Sharon Hinton was head nurse…ONLY “schizophrenia, chronic” as I would read upside down on my admission papers. Personality disorders are lifelong and chronic. You do not suddenly develop them midstream in your life. It makes NO sense that Hartford Hospital as the IOL would now suddenly “detect” an axis II borderline disorder that they never did before. No, in fact, what happened was they traumatized me, and then blamed the victim for TRAUMA behavior…Or actually, for no behavior at all, since I never even resisted the restraints except once. And then the last night when I screamed bloody murder. And I did not even know that I would be released the next day. That was purely chance…and good luck.

In any event #2, I also took Zyprexa at Yale Psychiatric Hospital in February and March, and this disturbs me, because while I did some reading, my art output was tremendous as well. And Zyprexa was supposed to be only an INput drug. Of course, I gained ten pounds in two weeks…Worse, ever since I left, and got back on the Abilify and Geodon, and am taking NO Zyprexa, I haven’t done a thing, no poetry, no artwork of any sort. Not even a single trading card.

I do NOT believe in schizophrenia, not for me at any rate. I do not think I even need Zyprexa. But on the other hand, I wish I could take it, because I feel so much better when I take it and I do not know why. I mean, even when I am not fighting voices, I feel better on it. WHy is that? That doesn’t make sense…You should only take Zyprexa for symptoms that’s what I have always felt. Once the voices go away, forget it. Yet, yet, yet…I know my brain works better on it, and always has. It doesn’t seem fair. (Not that life is or should be fair…But I mean, really, my single most hated drug in the arsenal, and it is the one that works best and not only that it works really well…???) CRAP! My biggest fear is gaining weight. I understand how petty that is, and I should be bigger than that spiritually, but I am not. I simply cannot do it.

So there I am, and that’s the picture. Now you know how two-faced and hypocritical I am about medication. I tell people to take theirs. Or not. And I wont even take the one medicine that I know helps me, because it will make me fat. That is really the only reason I do not take it. The only reason. It is that petty, and that simple. But that impossible.

One additional drug that I take now, in addition to Abilify and Geodon and Ritalin is Xyrem, sodium oxybate, an anti-narcolepsy sleep drug, that helps me get delta sleep at night, slow wave deep sleep and to need less Ritalin during the day. As far as I am concerned the less Ritalin I take the better. I have never liked needing it or taking it, but I have always needed it just to stay awake during the course of a normal day. I haven’t gotten through a single day without several periods of sleepiness since college, when I would fall asleep at any time of the day, very unexpectedly.

Now that I take Xyrem at night, twice a night, though, I need fewer pills for alertness during the day, which is great. I also find that my appetite is vastly reduced, which might help with the Zyprexa, except that I could not take the two drugs together, as they are both very sedating and cannot be combined…What it does do is prevent any confusion of dreams with reality. I simply do not remember any dreams, and do not confuse the two any longer, I do not know why. I am not sure if this effect would hold true for all or if it is just for me. It is possible that dreams would increase for others. I only know that I used to have a huge problem, before the Xyrem and the other meds, with nightmares every night and being unable to tell dreams from reality…but now that I no longer dream I simply have neither problem at all.
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*A huge relief: When I write that I am glad and relieved they did not Dx a borderline personality disorder, I must tell you that I am aware that in the hospitals where I have been abused, they dx such Axis II disorders as a way of communicating to all the staff that a patient is “manipulative and devious” and basically you cannot trust anything they say. I KNOW this to be the case because I have two psychiatrist siblings so I have gotten the lowdown, ie the truth about such terms in hospital REALLY mean. And to be called “A Borderline” in a hospital, is not a good thing. It is shorthand for being called a Royal Pain in the Ass.

Now, having Borderline Personality Disorder is something different from being called A Borderline…And having the disorder means you are suffering a great deal ALL the time. But in the hospital, when they claim to “suddenly detect” borderline personality, it is something wrong with the hospital, not the personality. And my point is that when they have brutally secluded or restrained a patient, that is NOT the time to suddenly be detecting anything except iatrogenic PTSD…

Art Trading Cards at Yale Psychiatric Hospital…plus

These are the trading cards I made at YNHPH…each is only 2.5 by 3.5 inches. I think most need little explanation. I originally offered them for sale, though I usually just give them away, until i read about the new tradition (started in 1996) of artists actually trading these cards and never selling them. So if anyone would like to send me a card they made, in the proper proportions, 2.5 by 3.5 inches, i will send you one back. No requests for any specific cards please, as many are already spoken for or given away. You can ask for a specific subject but no guarantees. B)   That is an emoticon for me in  glasses with a smile!

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I also wanted to repost these two pictures for staff members who wanted to see them…finished. The first has been renamed and is now bound with light brown origami paper on the edges so it is finished and no longer rough.

Reflection on Room 101 in the Ministry of Love, it is approximately 5 feet by 4 feet.

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The other used to be called In Her Hands, and still is, but is also clearly a version of the well-known tradition of Black Madonnas as I ought to have recognized all along. but was too dense in doing my own thing to see…

2.5′ by 3′ approximately, with built on papier mache frame (work is made of papier mache, collage, painting and the kitchen sink…)

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BLACK MADONNA

At Yale Psychiatric Hospital: Respect, Dignity and Kindness

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Large picture I did at Yale Psychiatric Hospital, the second one.

The pictures below are actually only 2.5 by 3.5 inches and are artist trading cards. I drew many of them, especially when I did not feel like working on my larger drawings at the hospital.

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In mid-February, after a week out of the hospital  (and you can read about my hospitalization by scrolling down to the previous post, but, in brief, this had been at Hartford Hospital’s Institute of Living, during which I was kept in seclusion for the larger part of a four week stay and put multiple times, sometimes twice a day for many hours in 4-point restraints. Why? Why? Although I ONCE threw a chair, they told me it was for “not following directions.” To add insult to injury, every incident in which they restrained me was accompanied by three injections in the buttocks of Haldol, Ativan and Benadryl, despite my policy of passive, completely non-violent non-resistance.)

 

In any event, in mid-February, after I had spent just a week at home, I became acutely psychotic again, and in consultation with the only doctor I trust, a friend drove me to Yale New Haven Hospital’s emergency department. There, after a very long and arduous wait  — alas, I cannot say much that is good about Yale’s ED. It felt like the psych/alcohol patients – and there were no discriminations made between the drunks and anyone else — were lined up on their beds in the hallway like buses at a terminal for what felt like “miles.” In fact at one point there was probably a line 15 gurneys long snaking around the corner until I could not see the end.

I was there for two and a half days, maybe longer, I do not recall. In fact, I remember nothing about my ED stay after I was finally “admitted” to the actual psych portion of the ED, as opposed to the hallway. I believe I was finally given medications, but also that I was no longer permitted access to my artist crayons, which meant that I only wanted to sleep and likely did until I was admitted to the Yale Psychiatric Hospital, a street or two away.

To say that my experience at YPH was an order of magnitude better than it had been at the IOL or even at Natchaug Hospital is truly not to give YPH enough credit. I scarcely want to mention the other two hospitals in the same sentence, that is how different Yale is and I say that even though I once considered Natchaug my “gold standard.” No longer, no longer. I think Natchaug was decent once, but only because of the civilizing and humanizing effects that the director of nursing, Sharon Hinton, APRN, had on the hospital. Once she left, the whole place went to pot, as evidenced by my experience during the last two stays, which went progressively from bad to terrible without her there…literally without her protection I was brutalized by a dehumanizing medical staff that had been left to do whatever it wanted to on its own, to hell with the consequences to the patients.

Be that as it may, and we know that the Institute was never humane, Yale took me completely by surprise. I was hard to surprise, and hard to convince that they were for real in their gentleness and kindness, let alone in their determination to treat me and everyone there with respect and dignity. I was certain that they would prove me right, that SOMEONE would be put into restraints, that someone would be violent enough to push their buttons and get 4-pointed. But it never happened, not in the entire three weeks I was there. Not even when a patient threw a punch or a push. Not even when a patient screamed bloody murder or used foul language. Nothing that earned me or anyone else seclusion or restraints elsewhere even came close to pushing the staff’s anger buttons at Yale. Instead, they persisted in using persuasion and gentleness and kindness…and if anyone lost it, if anyone became angry and could not keep it together, so far as I could tell, that staff member took themselves away from the situation to cool down, and did not take it out on the patient.

The most amazing things happened. No one forced me to do anything. Not even to take medication. I agreed to take it, after some discussion with the doctor and social worker…but when I evinced some doubt about the side effects, instead of pooh-poohing them as the doctor had at the Institute, Dr Milstein agreed with me, saying that the Zyprexa definitely increased appetite, and that it was not imaginary or something that was in my control, the way Dr Banerjee did at IOL. Instead, he and the other team members not only agreed to help me control what I ate, but went out of their way – I believe they actually went “Stop and Shopping” – to provide me with my own private supply of raw vegetable snacks in the staff refrigerator to eat at any time of the day…just so I wouldn’t have to be tempted by the hospital snacks of Doritos etc.

 

Dr Milstein asked me not to worry about what they did or did not do “extra” for me,  and I tried not to. But when two large bottles of brand name Diet Coke kept appearing for me every day, and when the resident was sent to buy me batteries for my personal pencil sharpener (with a grinder not a blade), just so I could continue to do my artwork and not rely on the staff to sharpen my pencils in the back, well, I knew 1) they were truly watching out for me and treating me with TLC, or what certainly felt like extraordinary care, and 2) they were in fact spending “extra” money, if not indeed their own money just to supply these special needs…All of which – or NONE of which would have mattered at any other hospital or to any other staff. If I had no pencil sharpener, who would care? If I had to eat hospital food, who gave a damn? Dr Banerjee basically said it was MY fault and only my fault if I gained weight on Zyprexa, that none of his other patients, the good ones, ever did. But at Yale, all these matters were important to me, and so they were important to Dr Milstein to to Chris Simpson the social worker and to the other team members. Not just as a matter of words, but to be taken care of so I could both take the Zyprexa and do art.

Just as important, Dr Milstein took at least a half hour every single day, and I think sometimes it was more than that, simply to talk with me and listen to what I had to say. Even if it was only to rant about how badly I had been treated at the IOL. He repeatedly told me that he just wanted me to learn to trust again, to believe that not everyone was against me or would hurt me…And if I did not learn that precisely, I did eventually come to believe that the staff at Yale were trustworthy and kind and meant what they said about their NO restraints and NO seclusion policy, for everyone. I may had still had frissons whenever someone screamed or threw a fit, panicking, believing that 4-point restraints were finally going to be resorted to. PTSD is not that easily overcome after all. But I grew more trusting, and by the time of discharge, I was able to thank them all for everything, to know that they had gone out of their way for me,  and not feel too  guilty.

I did  a fair amount of art while I was at Yale Psychiatric Hospital. I will post more in the coming days.

Update: All is well

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This is the drawing I finally finished that I did at the horrible torture chamber of the Institute of Living. There are all sorts of hidden things in it that you must rotate it to see fully…

Hi Everyone, Sorry to worry Lady Quixote and anyone else. I was in Yale New Haven  Psychiatric Hospital for last several weeks. A much better stay by far of which I have much to say. But I am recuperating for the next few days as I just got home a couple of days ago. Forgive me for being so out of touch, but even making a long distance phone call was nearly impossible from there…Luckily, the staff and doctor treated me and everyone with immense kindness, gentleness and dignity and respect, so I got what I needed, which was some weeks of healing. Praise whatever force of the universe you believe in for that! More to come as soon as I am able to write more and many thanks for all your concern and your patience.

Pam

My Psychiatric Advanced Directive — IGNORED at the Institute of Living at my Expense

These are the first two pages, including a note from the cover page, of my very very detailed Psychiatric Advanced Directive, and I think you will see why what happened at the Institute of Living, the psychiatric section of Connecticut’s Hartford Hospital, NEVER should have happened. Not only did I bring a hard copy of this PAD, but I wore a medical bracelet with a code for a very complete online medical record, with uploaded documented evidence, both of narcolepsy diagnosis and need for medication, proof from longtime outside mental health providers that I do NOT have “borderline personality disorder,” and other such assistive documents…ALL were soon ignored completely in the effort to discipline and punish me “for not following directions” i.e. not getting better fast enough and speaking my mind to the psychiatrist.

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Prominent NOTE on cover page:

Miss Wagner has experienced multiple episodes of severe psychological and physical trauma. She must NOT be subjected to either physical or mechanical restraints or involuntary seclusion at ANY time. The use of either imposes a serious risk of re-traumatizing and injury, leading to regression and severe worsening of symptoms.

Pg 2.

HOW TO INTERVENE IN A CRISIS:

DE-ESCALATION IS ESSENTIAL

  1. 1.    PLEASE REMEMBER: I can calm down if YOU follow these steps and do not threaten me, order me around, or approach me in anger or in fear.
  2. I need one person to talk to. I should be approached calmly, by someone who will speak in a kind and respectful manner, understanding that above all:
  3. I AM SCARED and my anger masks fear. I am not dangerous. I WILL ONLY FIGHT IF YOU ATTACK ME. Please remember that any show of force and people ganging up on me to administer forced medication will be felt as an attack.
  4. I can be persuaded to take oral medication, usually, if this is negotiated with dignity and kindness and not by means of threats.
  5. DO NOT ISSUE ULTIMATUMS you won’t back down from…That will push me into a corner and you too, and will serve nothing but to escalate the crisis.
  6. A calm unthreatening and unthreatened person should ask me calmly and patiently if I can speak in a lower tone of voice, so she can hear me better. Ask me if I can take a deep breath and try breathing techniques that will have flown my head in the moment of crisis.
  7. Should you have a COMFORT room available, you can guide me gently to it but do not close me alone. Make sure I am warm…
  8. ABOVE ALL YOU NEED TO BE PREPARED TO LISTEN TO ME. This is not just a matter of forcing medication. Medication may not even be needed if you hear what is going on and what the problem is.
  9. If you take these simple steps, it is virtually guaranteed that the situation will resolve calmly and without any need to resort to the sorts of violence that would permanently damage and re-traumatize me (or produce secondarily negative behaviors afterwards): seclusion, forcible injections, or mechanical restraints or physical holds.

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STATEMENT TO CAREGIVERS

It is vitally important that you understand that despite a few previous in-hospital assessments, I do not have a personality disorder, borderline or otherwise (you can confirm this with any of my longtime outpatient providers) and that if my behavior seems out of control, it is because I am out of control: I literally do not at the time know what I am doing or why. I am not manipulative or attempting to achieve secondary gain. The fact is I have had tertiary CNS Lyme disease and after positive PCR and Western Blot tests during treatment, I was informed the condition is likely incurable. (Dr ******* of ****** NY, will confirm this.) During the initial illness, my brain developed multiple lesions, visible on MRI, which may predispose me to temporary emotional and behavioral extremes and abnormalities but these are NOT my norm. Anyone who knows me well would confirm this, if you asked them.

You need to understand that I am not always able to communicate the extreme fear I feel, the global paranoia that I experience, but because I feel so threatened and unable to communicate clearly about it I may become very angry at the hospital situation. I am not an angry person. I do have trauma issues, as many people do, which may be exacerbated by being in the hospital.

Please be aware in advance that my “memory in the p.m. for what happened in the a.m.”  is often faulty. That is just how it is. When in crisis, I have little ability to recall from moment to moment what happens. This is why it is essential that I be able to write things down. I have lost many years to this amnesia and if I suffer additional trauma it will only make it worse.

I beg of you, do not make assumptions about me. Do not make assumptions about my state of mind. Do not “put two and two together” in your mind without asking me if the conclusion you have drawn is the correct one. You do not know what is inside my head without asking me.

Ascertain whether the information you have at hand is correct. Too many records and hospital charts have been drawn up (because “patient is not communicating”) on faulty information from earlier charts or information gleaned from others but not from me, and the consequences to my treatment have been devastating. PLEASE CHECK MY INTERACTIVE HEALTH RECORD ONLINE at www. — .com Use code ***** to get access.

 

I have been traumatized by abuse, sexual assault and by brutal treatment in hospitals, from being deliberately choked and given forced ECT to being kept in four-point restraints for several days at a time. So if I experience seclusion or restraints or even that euphemistic obscenity called a “therapeutic hold” it will be devastating and counterproductive. Such treatment invariably leads to increased anger, regression and worsening of symptoms, and my behavior becomes unpredictable afterwards. This is a response to trauma NOT because of any inborn temperamental disorder. I have already outlined a better way to deal with me and help me on page 2.

I KNOW YOU MAY NOT APPROVE OF POLYPHARMACY. But you need to understand that I must take the antipsychotic drug combination: Abilify 15mg with Geodon 160mg, a TWO-Drug regimen. Monotherapy does not work. I have tried many solo drugs over the course of 4 decades – Thorazine, Mellaril, Haldol, Prolixin, Clozaril, Risperdal, Seroquel, Zyprexa and others – ALL monotherapy has failed.

I will not take any drug that induces weight gain. If you force the issue, know that it will be a useless endeavor because I will stop taking it immediately upon leaving the hospital.

Finally, understand that if I am here in the hospital it is for a reason, and I want only one thing: to get better and be out of here as soon as possible. You can traumatize me and worsen my symptoms and keep me here too long, or you can work with me to achieve my goal, which should be the same as yours. I don’t see any other alternative.

 Respectfully,

Pamela S. Wagner

Now, I think that is about as crystal clear as it can be, no? And indeed, Dr Banerjee, my first psychiatrist LOVED it. Said so, and raved about how complete both were, both the PAD and the online medical history which he downloaded, printed out and brought with him to our first consultation. So what happened? YOU tell me! I will write more about what I think happened later. I am still trying to figure it all out.

Art created at the Torture Chamber called the Institute of Living at Hartford Hospital

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I was a prisoner at Hartford Hospital’s Institute of Living’s Donnelly 2 South from January 10th until February 7th, 2013, the day before the east coast blizzard, and I only “escaped” because the torturing doctor went on a four day vacation and the substitute decided that I was not actually psychotic any longer and did not need seclusion or restraints after all…and opted to let me go the very day I was freed from both.

 

Good thing too, because it was a Thursday and all travel stopped the very next day and for several days after that. The picture above is one that Shedana, RN liked very much. She said it captured her “physique” and while the flooring is imaginary, the unit was structured much as it is pictured. At least while I had a bed on the unit, with my door facing the med room and another bedroom opposite. Shedana was a “good egg” but of course it didn’t help when they decided to attack me in force and secluded me for two weeks and worse…But more on that later.

 

The first doctor I had merely convinced me to take, semi-voluntarily, a fairly stiff dose of Zyprexa. which I tried to do with regularity. I soon found, however, that far from being the miracle drug it had once been, mixed with Abilify and Geodon it induced a state of apathy and boredom. As if the Intake and Feeding drug, the drug on which I used to feel enthusiasm to learn and read, Zyprexa, simply mixed very badly with the Output drugs of Geodon and Abilify, such that I neither could read and learn, nor do art or write. In any event, this abysmal lethargy pushed me out of desperation to paint this, in oil pastels.

 

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After that, I simply started refusing to take the Zyprexa, and refusing a lot of other things…A great deal of abuse happened. But I did this picture before all my art supplies were confiscated for no reason other than punishment (you cannot damage yourself or others with soft oil pastels)

 

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Before I tell you some of what happened, without naming names, lest a legal case be made against them, as there might possibly be a chance to do, let me show you most of the rest of the art I did there, though one of them is unfinished and may never end up being finished, since it was hospital art and may stay that way.

 

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This one is an oil pastel, me with a dung beetle pushing a ball of shit around on my cheek…Says enough just that, doesn’t it.

 

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This one can be turned any which way to see all sorts of things buried in the picture. It was the one I started first and never did get to finish. What I can point you towards is the central object at the very bottom, which you can trace up to the blue figure and see what is happening. It should tell you something…The hand on the upper left is pointing at this process. Also, the exploding biohazard ball is part of it all, representing me, the all-polluting biohazard…But you have to look at the picture carefully. There is a Boat To Nowhere, and there are a couple of turtles, why, I don’t know…yadda yadda.

 

Finally, the very last time I had access to any art supplies, and I do not recall whether it was my last morning or some other time, I painted this one with oil pastels. I believe it speaks for itself.

 

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What happened was that they were routinely, literally routinely restraining me “for not following directions” as they would quite openly state. Four-point restraints, in a tight no movement position, for many many hours at a time, with absolutely no indication of how, just how, I might “earn” my freedom. Of course they wouldn’t tell me what I could do to “be good” because I hadn’t done anything to ‘deserve” restraints to begin with as they knew perfectly well. For example,. and this was typical, but it was one of the few opportunities I managed to document because they ha removed all my writing materials, illegally, but I forgot that I had a right to a crayon and paper until Feb 6th. That afternoon, I simply walked away from my seclusion room. I had had enough of them saying it was “merely a side room” not a seclusion room, then preventing me bodily from leaving it. So when I could do so without someone actually wanting to fight me, I walked away, and proceeded to enter the unit and walk down the hall to the end and look out the window, I took a deep breath, heard THEM behind me, and sauntered back to the proper end of the hall, the “lost end” where they kept anyone from seeing me or knowing what they were doing to me. Once I got there, they descended on me, the horde of the goon squad, some staff I knew, but most I did not. I did not bother to look at who was doing what to me. I simply lay passively on the bed, and put my arms out so they could do what I knew they would do. Tightly, they shackled my wrists out past my hips so there was no play in the restraints and I could not turn on my side or do anything but lie stiffly on my back. At the same time, others jerked my feet apart and just as tightly shackled my ankles to the lower corners of bed. Then came the coup de grace. They pinioned me on my side somehow, pulled down my pants, and injected me with three drugs: Haldol 5mg, Ativan 2mg, and Benadryl 50mg. Why, except as punishment I do not know. because I had, just a half hour before, been doped up on involuntary Zyprexa 10mg.

 

But of course it was punishment. The very fact that they told me it was “not punishment” but “what your behavior brings on every time, Pamela” only proves my point. At first and usually they only said, it was because I “didn’t follow directions” so if they were not punishing me, what were they doing? They most certainly were not following Centers for Medicare and Medicaid regulations for the use of Restraints and Seclusion only in cases where a person is in imminent danger or harming self or others! Indeed, the best they could do, when I protested, passively, saying just those words, was to respond, “You are not safe” as if that proved somehow that I was in danger or posed any imminent threat to the safety of anyone.

 

No, I did not. I didn’t threaten or harm anyone. I merely walked the length of the hall and looked out the window and then went back to my solitary confinement. But it was enough to trigger their retaliation, and that started at 1pm. I was not released, not even to use the bathroom or eat supper, no never even was a single hand freed to permit me to eat supper — until 7pm.

 

THEN, at 8:30pm, I became upset and frustrated because — well, I do not know now why, but I “threw a half a graham cracker at the wall” as I recorded later. And the goon squad descended on this dangerous patient again, not only with the strait jacket of four point restraints, but with the same 3 drug IM-in-the-ass cocktail.

 

This time, however, passive as I was as they trussed me up — and I said only, “For shame, for shame. You ought to be ashamed of yourselves, doing this to me…” — passive as I was, allowing them to seize my limbs and tightly shackle me yet again in truth I dared not resist, as that would only have justified their violence, and i already had my share of bruises. Bur I had come to my limit of the abuse i would silently tolerate. They could restrain and seclude me but they had up till now only silenced me in restraints because iu wanted to earn my way free quickly. THis time I didn’t give a damn. It was nearly nine o clock and no one knew what they had done to me. Everyone was getting their bedtime meds and going to bed without any understanding of what was going on. I was a stranger to most people on the unit, who had no idea I even existed. THAT was a situation that had to change. NOW.

 

After they trooped out of the room, stationing a 1:1 sitter at the door as usual, I stopped my merely silent and passive resistance and started to scream. I wanted to be heard. I wanted to scare people. I wanted them to wonder, Who is that person,. and what in god’s name are they doing to her? Are they torturing her? And I wanted them to ask questions of the staff that the staff could not answer. I screamed and I screams in desolation and despair, feeling like my life was at an end. The plan they had set up for me was impossible for me to live up to. In nearly 10 days I had not even earned my way to a pencil and my journal. Only to restraints and more restraints. I saw no way out of the hospital. So I screamed, long blood-curdling, heart-wrenching screams that I assume did the job of scaring all, as eventually they closed my door, much to the disgruntlement of the sitter who was forced to come inside with me and was no longer free to socialize. But not for a while. I kept on screaming until my voice gave out and I felt asleep.

 

The next day the substitute doctor freed me, I dunno why or how, but she did. and I thank my lucky stars as the staff doctor was a sadist and never would have. I have a lot more to say, but for now I am hoping to hear from a sympathetic lawyer who will take on my case for some reason for some purpose…Unlikely to happen. despite my bruised body and joints that are so out of whack I cannot sit indian fashion or cross my legs. Why won’t they help me or respond? I didn’t die, so they won’t earn a lot of money from my case, nobody gives a damn about mental patient abuse…

 

You really know when you are a third class citizen when you only MIGHT be worth more to them dead than alive.