Tag Archives: schizophrenia symptoms

Daniel Mackler’s Amazing Movie on Recovery From Schizophrenia

Video April 28, 2014 Phoebe Sparrow Wagner Leave a comment

TAKE THESE BROKEN WINGS…

This is an incredible video, which, though long, is well worth watching. For anyone who believes that recovery without medications is impossible or not likely, you should watch this with at least half an open mind. And for anyone who has given up hope, this should give you a lot of hope. I usually cannot watch entire videos half this long, but I watched this one all the way through, even though I admit I had to take breaks because (Yes, I take meds myself) my attention span is short…But it was worth it to learn that one of the women featured not only recovered from her severe schizophrenia without taking psychiatric medication, she remained absolutely psychosis free and became a psychiatric nurse for 30 years. What I would give to speak to her about the sorts of treatment, or abuse that passes for treatment here in CT! But be that as it may, do watch this if you can. It is absolutely astonishing. And beautiful too.

Health, Mental Health

Sometimes it Takes a Village …to avoid the Hospital

November 17, 2013 Phoebe Sparrow Wagner 1 Comment

Sometimes it takes a village...of caregivers — Sometimes it takes a village…of caregivers

I swore that after I left Hartford Hospital’s Institute of Living last January, 2013, having spent the better part of a month in seclusion and many many hours brutally and punitively four-point restrained, I swore I would never go anywhere that would treat me like such an animal again. But then, having twice been treated at Yale New Haven Psychiatric Hospital once in early 2013 and finally later on that same year, discharged with piriformis syndrome from having been forcibly held down and injected in the buttocks over and over with 3 different drugs, Haldol, Ativan and Benadryl, I said that I would NEVER again permit such torture in the name of treatment anywhere, no matter what they called it. No not even at Yale.

Given the massive traumas I have experienced these past five to ten years in Connecticut mental hospitals, abusive practices that have only increased since my first hospital stays in the 70s, I decided last August, post Yale: never again. Never again would I go to ANY hospital whatsoever.

To that end, my family, my family of origin, since I never married and have no money of my own, has taken it upon themselves to hire for me (or let me arrange for myself the hiring of) several personal staff members to “come on board” for me in my apartment 24/7 starting in late December and if necessary work through January, if there is a crisis. I haven’t gotten through any January without a hospital stay in several years, so it is a good thing to be prepared, on the one hand. But the very fact that I need not fear the hospital now might also mean I can avert the worst of any crisis! Who can tell? All I know is that we are all talking about how to help me primarily stay safe from what the voices command me to do, and how to do so without panicking or calling 911.

One thing I insisted upon was NOT using any agency, because while they serve a function, I suppose, they also pay their workers shit. And someone who is paid $8 an hour is not going to want to do the same quality of job for me, while sitting with me in my tiny apartment as someone who is getting the entire $20/hour, if you get my drift. And why would they? I need people who are committed to keeping me safe from myself at the height of any craziness that might assert itself, and if the voices command me to grab a pencil and suddenly stab myself with it, as they frequently have, I NEED to know that the person I have hired will be right there with me, ready to grab it from me, not in the other room reading a book, or cooking, or yammering on the phone to a friend. For $20/hour I think it might not be too much to ask. At $8/hour it might be.

For $20 an hour, a person can stay awake all night and not need to work another job immediately upon going home, so I will know that if I wake up in my recliner and hear command hallucinations to set myself on fire, she or he will be right there to stop me. Because that is how it happens, has in fact happened just like that.

It is the only way to do it. Unless $20 somehow is not enough to cut it, pay wise, (and I cannot afford to pay more, over all) (the people I hired are also already not working other jobs either…) I think it is not a bad wage, is it? Honestly now, tell me. I am not asking for much else but for someone to sit with me, talk with me IF i feel like it, and watch me to make sure I stay safe. The worst thing would be boredom I imagine. But I don’t usually bore people even when ill. THat is not often their problem. The problems are other things, for me at any rate, and those are that the people that sit with me in hospitals have NOT done their jobs properly at all, and have ignored all the warning signs, even my open pleas to please please “do your jobs. I am on “one to one” for a reason!

No, in the hospital, the aides just turn their backs and stand in the doorway, facing outward, away from the room i am in, and gab with the other aides, completely ignoring the person they are supposed to keep their eyes on at all times. It is crazy. I remember a woman named Jennifer deliberately turned her back to me no matter where I stood in the room, and if I went in to the bathroom, she left the outer room entirely…which was such a rule breaker. She knew what was happening, I think she was playing a game to see if I was truly dangerous to myself or not…Or really just didn’t give a damn.

Is it any wonder that at one point at one hospital, I asked to get off that status. It was simple: I just told them I was safe and they were so glad to reduce their workload they stopped the one-to- one immediately. The next thing I knew the voices had me begging to use my makeup compact. the one with a small glass mirror in it.

“Sure, you can. Just make sure you bring it back to the nurses station in five minutes,” said the Nurses Secretary, handing me the little black plastic thing.

Well it took all of three seconds for me to stamp on it with a hard soled shoe, break the mirror and slice up my left wrist bad…

Of course, they punished me for that. Or they would have, I know. But I remember, I wrapped a huge wad of paper towels around all the blood and told no one for hours, so when I realized that I needed stitches and had to admit to what I had done, it was too late for them to respond with the punishment of 4-point restraints…

The point is, the aides weren’t evil. Not all of them, or at least their lackadaisical attitude was borne out of a lack of caring which itself was spawned by being paid little to nothing. Why should they care? It was just a job to most of them, and little better paid that flipping burgers at a restaurant. Worse than that, because they had no perks and no tips.

So when I hire someone to sit with me, talk with me, keep me safe both from myself and hospital abuse, I pay them $20 per hour (and even $30 per hour over time during snow storms etc), I expect them to be responsive and not lackadaisical. I do not think that is too much to ask or demand. My life and health and bodily integrity depend on it.

Art, Health

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

September 7, 2013 Phoebe Sparrow Wagner 2 Comments

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

Art, Health, Schizophrenia

Art from Yale Psychiatric Hospital #3

March 27, 2013 Phoebe Sparrow Wagner Leave a comment

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.

Art, Health

Art Trading Cards at Yale Psychiatric Hospital…plus

March 20, 2013 Phoebe Sparrow Wagner Leave a comment

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!

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.

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…)

BLACK MADONNA

Art, Health, Mental Health, Mental Illness

Update: All is well

March 15, 2013 Phoebe Sparrow Wagner 4 Comments

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

Health, Health Care Reform, Hospital, Institute Of Living, Mental Illness, Seclusion and Restraints

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

February 14, 2013 Phoebe Sparrow Wagner 7 Comments

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.

__________________

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. 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.
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:
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.
I can be persuaded to take oral medication, usually, if this is negotiated with dignity and kindness and not by means of threats.
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.
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.
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…
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.
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.

p 3

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.

Health, Life, Schizophrenia

“Lady Quixote” on Recovery from Hearing Voices

January 8, 2013 Phoebe Sparrow Wagner 2 Comments

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

From “LADY QUIXOTE”:

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

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

Life is a mystery. Death, even more so.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Am I Crazy? Hallucinations, Delusions or Consensual Reality

November 4, 2012 Phoebe Sparrow Wagner 6 Comments

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

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

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

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

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

But let me go back towards the beginning.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

__________________________________

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

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

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

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

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

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

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

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

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

Acceptance, Health, Mental Illness, Uncategorized

No Meds, No Doctors: “How I deal with mental breakdowns”

June 24, 2012 Phoebe Sparrow Wagner Leave a comment

This is an extremely interesting article. Not for everyone, perhaps, but well worth reading.

How I deal with mental breakdowns.

Brain, Empathy, Health, Health Care Reform, Memory, Mental Illness, Poetry, Psychiatric Unit, Psychiatry, Seclusion and Restraints, Trauma

Useless Psychiatric Mediation and a Poem

May 15, 2012 Phoebe Sparrow Wagner 2 Comments

(Before I write this blog entry, I want to send this message:To certain people from Middlesex Hospital who read this and are following developments in my case against you please be aware that I know who you are and I am watching you. You do not and will not get away with what you did nor with what you are doing now.)

That said, let me tell all the others of you out there what happened at the mediation- meeting-that- wasn’t, this morning at Middlesex Hospital.

As you know, I have been wanting this meeting for a long time, but when I got there not only did I discover that they were playing the game of “Oh, I had no idea that you wanted a mediation meeting, I didn’t know what this meeting was about at all…” but that the CEO had actually cancelled on last Friday the people that he had arranged to meet with me. So in fact the only people who came were administrators, not anyone who had treated or dealt with me on the unit itself, except the doctor who saw me for the last 11 days of my 6 week stay. He may have been the director of the unit, but he was hardly the main doctor I saw, despite what he claimed.

Anyhow, the meeting was extremely — well, first of all, it was largely a waste of time, because NOTHING was said of interest to me. Except that Dr Grillo, the unit director, after I read what follows, actually had the gall to claim that restraints were entirely appropriate…He said nothing whatsoever about what they did to me. OTOH, I can understand why. After all, he had already been told that we were writing the Department of Justice and the Joint Commission regarding his unit, so he must have felt supremely threatened. Naturally he could not have admitted wrong- doing. Not that any god, excuse me, doctor that I have ever met has ever admitted doing anything wrong or ever apologized. God forbid, a doctor apologize! No, that would be too hard and too demeaning for them to ever do. Better that they go along and permit torture and abuse than that they admit that there was wrong done to a patient on their watch, much less that they personally even made so small a thing as a leetle eensy meestake…

Well, I know what they did to me and I know it was abusive and wrong, and so far, except for Dr Grillo and that lot, NO ONE I have ever met outside of Middlesex Hospital has ever ever agreed with him and said, Yes, in fact the use of restraints was proper and necessary, and they were right to do what they did to you.

So take that, you watchers from MH. I hope you tremble in your boots for torturing me so. Because you never apologized, and wouldn’t’ meet with me to talk about it, it serves you right whatever happens now. I came down there today , and it took all the courage I could summon up to do so. I came down there, after two nights without sleep, just to meet with you and talk about what happened on April 28, 2012. But you couldn’t be bothered to deal with me, and so now you will deal with the DOJ and JCAHO. And too bad for you if that means that heads roll and some of you lose your gd jobs. I do not care any more. I tried, I tried to reconcile and talk with you about it, but you didn’t have the courage to do so, you wouldn’t deal with me, and so now you can deal with the powerful ones, and not me. Now I don’t give a damn what happens to you.

Meanwhile, this is what I was going to read to all of you, and what I did read to the hospital CEO and the administrative personnel, and what the advocates are sending along with the letter to the DOJ and JCAHO.

STATEMENT TO N-7 TREATMENT TEAM & CEO OF MIDDLESEX HOSPITAL et al.

Although I have a longer statement, I first want to read you a poem that I wrote about my experience here. It is only half a page long, but like any decent poem, it says a great deal in few words. The expression “Long pig” means a human being intended for eating.

TO MY PROTECTORS

I came to you fractured,

splintered to syllables,

all-fired to incinerate

the house of my body

where the devil lived.

But I was not nice,

not nice, not nice, no,

I was not nice enough

for balm and kindness,

or to win back my art

or my writing supplies,

so I upended a trashcan

on top of my head

and uniforms nailed

me, naked X, to a bed.

It gouged my brain.

Freight train. Tank.

Two years: still blank.

Nurses, doctors,

thieves: you knew, you

knew. You made of me

pulled pork, long pig

X-posed and pinioned,

not quite a specimen

for your knew the subject

and your objective :

your satisfaction showed

as you struggled to hide

your smiles.

I was admitted to North-7 in extremis: confused, psychotic, and traumatized. Exquisitely vulnerable, my sole comforts were doing art and writing. These were also my strengths. Yet instead of using these to help me, you consistently employed them against me–withholding supplies as punishment when you felt I was not behaving nicely and worse, using loss of them as a stick when they were most needed. The first time this happened was on April 9^th, nine days after I had been admitted. I had been using glue sticks freely to make a large collage for several days. Angry at me for yelling at her, one of the senior nurses whom I won’t name, decided to withhold them. She would no longer give them to me until, as she put it, “the team puts them on your treatment plan.” This frankly felt like such gratuitous punishment, and so unnecessary, not to mention counterproductive, that I could see nothing in it but petty revenge. Nevertheless, not myself and not in control, I screamed, “Fuck you!” and ran to my room. Luckily, Christobelle from OT, the one person who consistently treated me not only with understanding and kindness but with respect and dignity as well, came in shortly thereafter carrying two gluesticks. I do not know whether she knew of these new restrictions or not, but I was grateful.

On another later occasion, I had been using my soft felt-tipped markers, which my old treatment plan permitted me until 10pm. That treatment plan had been changed, however, and the new, more relaxed one said nothing about markers, so it seemed to me that I was now allowed markers in my room just like anyone else. However, around 10pm, someone called Bob came in demanding them. He threatened that if he had to ask, quote, “a 3^rd time you’re in for trouble.” My pulse ratcheted upward. Uh, oh, uh oh. Why was he doing this? Was he deliberately baiting me, trying to pick a fight? He could so easily have discussed my understanding of the new plan. It wouldn’t have been so hard to figure out a compromise. After all, they were just Crayolas, not carbon steel knives. I was sick of the power plays, and sick of the way staff just wanted to control me instead of talk to me and of how they insisted on domination at all costs. Well, this time I was not going to give up without a fight, and it seemed that a fight was what Bob was itching for. Instead of negotiation and attempting to find a compromise, Bob reached out to grab me, which I construed as an assault. I screeched, “Don’t touch me!” Someone else grabbed me from behind. I kicked and punched. Someone told me later it was Ruth I kicked. In my journal I wrote this: “she was furious enough to lie and scream that I caused an uproar ‘every single night and I’m sick to death of it!’…”

I fought them then, clawing and screaming, trying in vain to resist, my body flailing as the chart itself notes, my heart hammering. Why were they doing this to me over a few markers?! I wanted to scream. Why were they being such bullies? They were hurting me! But of course there were several of them against the one of me and they were much stronger than I at 102 pounds so naturally they overpowered me. They literally dragged me to the so-called time-out room and dumped me on the floor, ordering me to calm down. Then they closed the door. No they didn’t lock it, but they kept me from leaving by leaning against the door.

You know, I don’t know why you bothered calling it a time-out room. No one could use it at will. And when you put me there, I didn’t ask to go – I was forcibly dragged there — and I didn’t want to stay: you kept me there by force so it was the same thing as seclusion, literally and legally. Time-outs have to be voluntary, you have to be able to come and go if and when you want to. When it is forced, it is by definition a seclusion. Period. That cold barren room was not a time-out room. Who did you think you were you kidding?

And listen, did it never occur to you that it was always your treatment of me that generated my behavior, yes, the negative behaviors as well as when I was in control? You could have found out what was going on by talking with me. Instead, you decided to dismiss everything I said and did as manipulative and acting out so you didn’t need to listen to me. Perhaps you thought this disregard was kept secret from me, but I knew it at the time and it caused me enormous anguish. All I wanted was to be treated like a human being. All I wanted was to talk to someone and be listened to. But all you did was make assumptions. You never checked them out with me to find out if they were true and they almost never were. Assume makes an ass out of U and me…But mostly it does terrible damage when the assumptions are wrong. I was so afraid, I was so terribly afraid, but you never knew the half of it. All you did was to dehumanize me, ignore my pain and order me to shut up and be quiet. I know I was difficult for you to quote unquote “handle.” Hell, I was difficult for ME to handle. But I do not have a personality disorder. Ask anyone who knows me. Ask my family. Ask the psychiatrist who saw me from 2000 until 2009, ask the psychiatrist I see now. But you decided that you could detect borderline traits (somehow transmogrified into the full-blown disorder upon discharge…) despite the presence of an active psychosis. By decreeing that I had such a disorder, you put me in an utterly untenable position, because then you had a justification, so you thought, for taking nothing I said at face value. To me it felt like nothing less than soul murder and I will tell you that this particular form of soul murder makes a person want to die. It makes a person want to bash their brains out in public just to get someone to acknowledge them and take them seriously.

April 28.^.April 28, 2010. You wrote in my chart your interpretations of my behavior that day and of what happened. Yes, your nursing and physician notes were supposed to be objective but dispassionate as they may have attempted to sound, all observation is but interpretation. I repeat: All observation is interpretation. Now I want you to know what happened from my point of view. (I know that some of you have been snooping around, reading my blog just as you did during my hospital stay, but you will have to sit through this anyway…)

At around 7:30pm, so the evening nurse reported in my chart, I “walked into the dayroom” and if one can believe this, without any provocation I “began shoving and turning over chairs. I then, quote, “picked up the patient trash can and put it over my head.” Staff ordered me to what they called the “time-out room.” Nursing notes report that I refused and, I quote, “went to bed instead.” Because I had not followed her direct order, the nurse wrote that “security was called and patient required security to carry her to time-out room as she refused to move or walk.” No, I simply lay on my bed, mute, trembling with terror when the phalanx of guards roared in.

Despite my lack of resistance, the guards physically took hold of me – unconcerned apparently with my known history of rape and of recent trauma — and took me from my bed where I was calming myself in the least restrictive environment. They physically carried me to the seclusion room and together with staff they forcibly prevented me from leaving.

This is what I wrote in my journal: “It was (freezing in that room) and they wouldn’t give me a blanket so I didn’t stay long…This only led to more goons pushing me back… this time strong-arming me and forcing me to a seated position on the mattress before quickly leaving but not locking the door.”

The nurse wrote this: “Patient refused to stay in time-out room… Patient attempted to shove staff, kicked at staff to get out of room. Patient was instructed several times to sit on mattress and stop pushing at and kicking staff. Patient refused. Seclusion door locked at 7:55pm.”

At this point both records state that I stripped off all my clothing. But the official records record only that fact, and that I then “was changed into hospital garb” and that I immediately stripped these off too. In my journal I wrote something else in addition that is rather revealing: Left alone in that room, I decided, and I quote, “they’d have to give me a blanket if I was [naked] so I quickly undressed and just hid under the mattress for warmth. This caused a stir for some reason and I was forced to put on hospital pj’s and lie down on the mattress. This would not do, not without a blanket which they continued to refuse me.” So once again I took them off and got up and tried to push through the woman barring the [temporarily] unlocked door. She called for reinforcements and they came. In fact, they came en masse.

“At this point” my journal continues, “they again subdued me and told/asked me why I was fighting. I said [it was] because I needed someone to talk to. That was all I wanted, just someone to talk to. One guard seemed taken aback. All these personnel hours wasted when all I wanted was a half hour of one person’s time? It seemed to strike him as ludicrous as it did me….

“Why don’t you just ask to use this room when you feel anxious or upset?” he then asked me.

“I do, I have!” I replied

“Well?

“They always say it has to be reserved for an emergency.”

He seemed completely flummoxed by that reasoning but there was no arguing with Policy so he fell quiet. Finally they decided to leave, telling me to be quiet and lie down.

I did. I did. But I was cold and I begged for a blanket.

“Sorry, it is too dangerous. You will have to sleep without one.””

Why was it so dangerous when I was on one to one and had an observer at all times? It made no sense. And why wouldn’t they just give me a sweatshirt and socks then? Or turn up the heat. How did they expect me to sleep, I was too cold!”

But this last categorical refusal was just too much. No, no blanket, no nothing. Just shut up and freeze. “That was it, I’d had enough! I dashed at them head-first and they parted, only to grab my arms and try to stop me. Someone twisted my right arm and held it behind my back, but I knew how to get him to stop it, so I tried to bite him and he briefly loosened his grip. I twisted my own arm back to me and my left pinky, held, closed tightly onto something, hooked so tightly it wouldn’t budge. My legs, the right one, grabbed the thin leg of a woman behind me, making her lean back off-balance and lose her grip on me. Then I switched to holding both my legs in a death grip around the legs in front of me. It didn’t matter one iota that [I had taken off my clothes again to get a blanket and] was naked…Anyhow, they eventually overpowered me.”

As one guard shoved me onto my stomach on the hard floor, his knee in my back, he muttered in my ear, “You bite me, I’ll teach you a lesson you won’t forget!” Then he mashed my cheek hard against the dirty linoleum till I was breathing dust.

I knew he was capable of hurting me, they all were. I also knew that people can die during prone restraint as the Hartford Courant and others have documented. Adrenalin flooded me, my pulse threatened to rocket out of control but I knew I had to calm down. Very deliberately, I forced myself to lie still, barely breathing.

Fortunately, when I stopped resisting, they released me and let me sit up. Someone gave me a sheet to cover me. The room cleared, except for a tech who was on 1:1 with me. She apparently was now allowed to talk with me, and for this I was supremely grateful. We conversed calmly. The door to the seclusion room had been left open, a big relief.

However, people were still talking in low voices outside the door. I heard someone trot down the hall, heard the open-and-shut of a cabinet door. I asked my 1:1 what was going on. “Don’t worry. They are just getting you some meds or making up a bed for you.”

“A bed?” I said. That gave me a bad feeling…Then I understood what was going on. “Uh, uh. They can’t put me in restraints, I am calm and it is illegal to restrain someone who is not a danger to self or others. You know that.” I repeated it loudly, loud enough so the other staff could hear me. I began to tremble, but forced myself to remain as composed as I could, mustering all the arguments I could against the use of restraints. A nurse entered the room then and asked me to come down the hall. Did I need an escort or could I walk there by myself. “Oh I can walk by myself. But you can’t put me in restraints, I am calm.” I was barely able to speak. I felt dizzy and short of breath but I tried desperately not to show it because I was afraid that if she knew how terrified and upset I was that it would actually give them justification. Nevertheless, I followed her to the empty room — my heart went cold, I could feel urine leak — I felt like “dead man walking” when I saw that in fact they had fastened four-point restraints to the bed.

I entered the room filled with staff members and guards. I told them over and over that I was calm and willing to take PRN meds. I said I knew they were punishing me and that they knew it too. No one contradicted me. The nurse in charge ordered me to lie down on the bed. I protested. She threatened that if I didn’t “they would assist me.” I was terrified of another assault. In fact I was so terrified just of the physiological consequences of fear itself – the flood of adrenalin and painful tachycardia — that I made myself get it over with. I lay down on the bed. Gritting my teeth, I said nothing even when they pushed aside most of the sheet that covered me.

I meant to remain silent. I meant to remain completely still in order to shame them. But when they pulled my wrists right over the edges of the bed, shackling them painfully below the level of the mattress, and spread- eagled my ankles to the corners of the bed, I broke that silence and objected — vociferously. I was appalled at their barbarity but my protests did nothing. I fell silent and let them do what they wanted. Finally satisfied, they trooped out, some of them actually smiling, leaving me alone in the room. I fell asleep quickly, a narcoleptic stress reaction. Nevertheless, no one returned for an hour. They extracted a pledge of obedience from me before taking off the shackles.

“When they released me,” I wrote in my journal, “my back hurt so badly I could barely walk and…my scapula muscles felt as if they had been separated. ‘I plan to sue you for doing this to me.’ I said as calmly as I could as I left the room. Nobody reacted.” As I wrote in my journal the next morning, “I woke in severe pain, the muscles in my chest felt torn from those that connect it to the shoulder… the pain went clear through to the scapula.”

That was not the end of it. Once you treat a human being in such a fashion, all bets are off as to how she behaves from then on. I no longer cared what you did to me after that. When you threatened me with restraints a few days later, I dared you to do it. I egged you on and so you did. My capitulation showed subsequently when I stripped naked multiple times, even voided on the seclusion room floor and smeared urine on the walls. You reduced me to an animal. I hope you were pleased with the results.

From what I witnessed, many of you — on the nursing staff at any rate– took no pleasure in your jobs. You apparently didn’t want to work in psychiatry, and wanted nothing more than peace and quiet and an easy day’s work. When one of you actually screamed at me, after that staff assault occasioned because I didn’t hand in my crayons on time, that you were “sick and tired” of listening to me every night, that was stupid and nonsensical. How can any hospitalized psychiatric patient be expected to worry about what makes a nurse comfortable? By rights it should be the other way around.

I think what it comes down to at the North-7 secure unit is that you expected patients to meet your needs and make you happy and you tried to force us to. In my case, and in at least one other patient’s that I witnessed, you even tried to physically assault us into doing so. But what a farce. Patients in the outer unit warned me to get out of there; they told my friends they were worried staff would hurt me. They were right. By the time I was discharged, I had almost no memory of what had happened over the previous 6 weeks. It is only in the last couple of months that anything has returned to me. Yet every single day since my discharge, when I least expect it, something triggers a thought or bodily memory of my stay here and instantaneously my heart starts hammering, I get dizzy because I can’t breathe, and I tremble and cry just thinking about it because I’m right back in that seclusion room and April 28^th is happening all over again…

Now, I don’t expect to recognize any of you. How could I? I still don’t remember much except those episodes I wrote about, and some little snippets here and there. I am told that some of you will be nursing staff on N-7 and some my so-called treatment team. Well, if you were my treatment team and you just turned a blind eye to what went on, for that you are just as guilty as if you accomplished the acts yourselves. Of course, the worst of it mostly took place in the evenings, in relative secrecy and when few were around. But if you knew it was happening nonetheless and If you approved, well, then, I have nothing to say except shame on all of you.

I felt helpless and utterly alone. Frightened beyond belief. No one defended me, no one helped me or came to my rescue. No one except Christobelle Payne. Christobelle treated me with compassion and kindness. She always made sure that I had gluestix and magazines for my artwork, even when your every impulse was to withhold them as punishment. I cannot tell her how grateful I was and how grateful I remain to her for treating me so humanely. I have never forgotten the oasis of kindness she provided in your North-7 desert.

Apparently no one else on the unit understood how to behave humanely or to treat patients with respect, or no one else gave a damn.

Punishment is the nature of what you did to me. You lost your tempers and you punished me. The result was that you permanently damaged and traumatized me. I believe you did what you did absolutely on purpose and I believe you did not care what the consequences would be to me.

Some of you deserve to lose your jobs because of it and because of what I’d venture to guess you have been doing for a long time to other patients. Perhaps you will. You all need to be thoroughly retrained, if that is even possible. Certainly the secure side of the unit needs to be completely reorganized and re-staffed. But that is not my job. You’ll find out what will happen after the Department of Justice and the Joint Commission do their thing.

I hope you remember me and what you did to me for a very long time. Unfortunately, I know I may never be able to forget you. I wish I could, believe me, I wish I could.

Acceptance, Art and artwork, Brain, colored pencils, Eating, Hospital, Medication, Natchaug Hospital, Psychiatric Unit, Wisdom House

Hospital Artwork

March 26, 2012 Phoebe Sparrow Wagner 5 Comments

Ogre Ate City — Me as the Ogre that Ate Manhattan

I did the last two of these at Natchaug Hospital this past winter, both of which may be obvious. The first, Under Attack from All Sides, was meant to express how I felt at the time, with the fingers pointing at me literally showing what the voices do, and the red high heel with a hand, strong, hefting that lethal looking spike — well those both belong to a certain someone I cannot name who wants me deader than dead and will do anything in her power to achieve it.

The second of the hospital pieces (I did others, but alas I gave them away and so never did have a photo of them to share…) is the last one posted here, the Ogre that Ate Manhattan, which is written partly in Spanish and partly in acronym. The message is KILL the Orgre that Ate Manhattan, but I figure you don’t need to understand that to enjoy the artwork…Not quite finished yet, but there is not a huge amount left to go…

Finally at the top is In her Hands, which is not done, though it may look it. This is a partly 3-D high relief piece, and partly a flat piece of acrylic painting. In truth a lot of it is optical illusion but not as a joke. The detail shows how her hands are painted onto the globe, not actually three dimentional at all; they just look 3-D because of how I painted them. I need to write more about more “important” things in my life, but for now this will have to do. (Addendum: I realized, days later, that I must have written the text of this very late at night, and possibly after I’d taken my Xyrem, the narcolepsy night time med. Why? Because a great deal of it was so badly spelled and some of it made no or little sense at all. I mostly do that sort of thing, dream talk, if you will, when I make the mistake of trying to write after I have taken my medication and get busy and forget that I am not “with it” entirely…so I am not aware when sense devolves into gibberish! Forgive me, anyway, if I seemed somehow sloppy if not wholly out of it!)

Pam W

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

ART SHOW IN HARTFORD

October 10, 2011 Phoebe Sparrow Wagner Leave a comment

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

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

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

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

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

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

Poems about Schizophrenic Symptoms: Word Salad and Delusions of Grandeur

October 10, 2011 Phoebe Sparrow Wagner 2 Comments

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

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

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

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

WORD SALAD

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

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

GRANDIOSE

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

Medication, Schizophrenia

Latuda: brief personal review

May 20, 2011 Phoebe Sparrow Wagner Leave a comment

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

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

Thanks all,

Pam

Lyme Disease, Mental Health, Psychiatric Unit, Psychiatry, Seclusion and Restraints

Natchaug Hospital Stay and Comfort Room

January 19, 2011 Phoebe Sparrow Wagner 3 Comments

I have been away since December 17^th, in the hospital yet again. This time the experience – at Natchaug Hospital in Willimantic — was vastly better than the previous two and not abusive at all. I want to tell you about this, but first let me go back to what happened to get me there.

In the beginning of December I began to have trouble again. The “people” came back with their jeering and mockery and commands. A general confusion assailed me. In my journal I recorded many “cries” of MATOOTAM! : “Kill the Ogre that Ate Manhattan” which many of you know means me. I also began to burn myself under the influence of those command hallucinations. I still believe this was all a Lyme disease relapse, but I had been on antibiotics previously for 8 years – with positive tests for Lyme and other tick-borne illnesses intermittently during that time — without being cured, so there was and continues to be nothing but symptomatic treatment. This means, as my new psychiatrist, Dr C, argues, at least temporary use of the hated, and loved, atypical antipsychotic, Zyprexa. I already am taking Abilify and Geodon, as well as Lamictal for mood stabilization and possible temporal lobe seizure activity. However, as has happened before, these were not effective enough to carry me through such a crisis, which is why I was encouraged to take Zyprexa, 20 mg to head off anything worse. Despite my resistance – I really hate the immediate increase of appetite and weight that accompanies taking it – I did so, I assure you. But the damage was already done and the crisis took on a life of its own, so to speak. By mid-December, I was no longer “safe,” the code word my visiting nurse among others uses for my listening to the commands the “people” give me. She didn’t know how true that was, though, until I finally admitted it after four days of what I will only describe as obedience to those same commands. I saw Dr C that Thursday, and though she was uncertain of my safety, she decided that I would talk with her every evening until I saw her again the following Tuesday.

The truth is, I do not really recall most of this, neither intellectually nor emotionally. I have had to be told and to refer to my journal in order to recount all of the preceding. However, I do remember what happened next. In addition to the reappearance of the People, I began to experience what I called “brain blips.” These were very brief episodes in which I felt as if my brain suddenly did a somersault, a little like the feeling when your heart skips a beat, except that it was in my brain and accompanied by a terrible dread and feelings of impending doom. After the fraction of a second in which the blip occurred, I would come back to myself – it felt as if for an instant I lost consciousness, but the blip was so very brief that it didn’t seem possible. These episodes were terribly frightening, even though nothing ever happened during or after them, not at least of the dreadful sort I feared.

That Friday evening, my heart racing and my mind itself awry, I was in another world, so confused that I wasn’t quite sure what was going on. I managed to call Dr C, who prescribed Ativan. It was too late to call the nurse to pick it up for me so I got in the car to drive the mile to CVS but as soon as I pulled out of the parking lot, the other world took over completely. I do not know how I actually got to the drugstore. I recall only that I could barely hear or see for the pandemonium in my mind but that I was aware enough of the danger to drive only 20 mph the entire way. Once there, however, I didn’t know what to do. I didn’t know how to get home and I forgot about getting the Ativan altogether. Somehow I managed to tell the pharmacist that something was wrong, that I couldn’t drive home, but she thought I meant that the car had broken down, and called a cab for me. I went outside to smoke a cigarette and wait for it, but I was so scared of the shoppers who came and went – the drugstore was open 24 hours a day so anyone in the area who needed something after 10pm came there – that I was unable to take more than a few drags, hiding behind a pillar. I returned to the pharmacist and whispered that there was something terribly wrong, with my brain, that as I felt, bugs had infested it and that I was in another world. Finally she understood and called an ambulance.

I won’t go into the drive to the ER except to say that I was so “out of it” that I wasn’t even upset that the EMTs made me get on the stretcher right in the middle of CVS and that everyone saw me being taken out of there. Once in the vehicle, I tried to explain to them that despite the large wound they would discover on my leg, there was something wrong with my brain itself, that this was not a purely psychiatric matter and that I needed medical, neurological care. Indeed, I still feel that way, but much good that did. Once a “mental patient” always a “mental patient” it seems. I admit, though, that having burned my leg did not help much. Still, I tried to explain that I needed an MRI of my brain, that something was wrong, a bleed or parasites or something! You can guess their response: of course, they summarily dismissed all of that and quickly had me packed off to the psych section of the emergency room. Although this is a very comfortable, large and separate unit of the ER, with single cubicles for each patient and a TV but also a video camera in each one, I waited 3 days before a bed was available for me, some 25 miles or more away at Natchaug Hospital, a psychiatric hospital in Mansfield Center, in Connecticut.

I name the hospital openly – as opposed to the others I have written about — because it was amazing in so many ways that I want both to sing its praises and to “advertise” it so to speak, to describe what a really good psychiatric hospital ought to be like. It is true that most people were in for a very short time, Connecticut having virtually no long term beds any longer, not even in the state hospital, but whether acute care or for somewhat longer stays, Natchaug was quite simply the best place I have ever been. From the food, to the – well, let me go into more detail rather than a mere summary (though in my opinion, the food was indeed a cut above that in any place I have been in, both in availability, and, with a salad bar at every meal, quality.)

Upon admission there was, to my dismay, a requisite “clothing and body search.” This procedure was done in such a way as to preserve as much dignity and privacy of one’s person as possible but I feared at first that it boded ill for the rest of my stay. Also, I discovered that although there were, I think, two private rooms, I had been assigned a double, a semi-private room, with a roommate already installed. This was upsetting to me, as I had almost always had a single, or been moved to one because the unit staff either felt I was too disruptive or unable to tolerate the stress of a roommate. However, when I saw how the semi-private rooms were carefully partitioned with a floor to ceiling wall in between the bed areas, I was much reassured. Although I eventually did for a short time have a private room, or a double that was designated as private – I frankly do not remember why! – I was not bothered by either roommate that I had while there. The one who did try to get me to – Oh, I dunno. I just am no longer one to “socialize” with other patients and I simply did not feel like getting to know her, or to excessively “sympathize” or otherwise expend my limited energy on her problems. I feel a little bad about this, but this one roommate, the second one, at first tried to involve me in her “stuff” and even left a journal or something next to my bed “for you to read to find out more about me.” Well, this was so very intrusive, and nothing I had asked for at all, that I rudely, but decisively said, “Why would I want to do that?”

I know that I would have been terribly hurt and humiliated by someone’s saying such a thing to me, but on the other hand, I would never have been so forward with a complete stranger either. In any event, she quickly took the papers back and left the room. However, a day later, she seemed to have no hard feelings, and we got along, if distantly at least as well as I wanted to.

Where was I? Well, I will tell you that the worst thing about my stay, and I suppose unavoidable, since I was there over the holidays, was that I had three different doctors for the three weeks I was there. but the best things were two, or more, but two in particular. One was that there was NO seclusion room, that is to say, the seclusion room that they used to have was not only now designated at the Comfort Room, but in fact was comfortable, and open at most times for use by anyone needing comfort. In it, there were thick mats on the floor, a Grandma Moses-like mural painted on all four walls by artist staff members and best of all a “therapy chair.” This is a very large and comfortable rocking recliner that is built in such a way as to elevate your legs, while you recline against the back, and let your feet dangle over the end. This allows the person to position the very lightweight chair near a wall so as to be able to lightly touch the wall with the feet and keep the chair rocking with little effort all the while lying back and relaxing. Their next improvement planned is to get headphones, wireless, or MP3 players with a selection of music for additional relaxation and comforting.

I usually tell staff at hospitals that they “cannot keep me safe” and indeed “prove” it by obeying in some fashion the commands the People give me…This never exactly endears me to anyone, and in fact has more often than not earned me a reputation as very difficult, even as having a “borderline personality” as an Axis 2 diagnosis (not true). Be that as it may, I was in fact kept safe at Natchaug, and when I was not, I was on a very helpful rather than punitive 1:1 or constant observation. At Natucahug, one-to-one staff were supposed to talk to me, rather than kept from doing so as at other hospitals, “so that you won’t come to like the attention too much.” The few times I became very upset, screaming, just screaming, at the top of my lungs, and rather than choosing to go on my own was escorted to the Comfort Room, by “staff assist” people (there is no “Dr Strong” goon squad of uniformed security guards), the door to the room was open and someone talked to me the entire time. Thus, when I left, on my own, when I felt calmer, I also felt that the reasons that I had been so distraught were also alleviated.

Also, although Natchaug, like any other hospital, did have a restraints policy, they did not use them a single time the entire three weeks I was there. In fact, though there was a very disruptive, troubling patient there the entire time (for once it was not I) I do not believe they even came close to considering using them. This time I believe it when they said that they almost never have to use them at all.

But the very best thing about my stay was something quite serendipitous: it turned out that the Director of Nursing for the whole hospital is Sharon H, the very same APRN who had been head nurse during my many stays at a Hartford hospital, and who had taken upon herself to supervise my care, or at least seemed to have in some sense “taken me under her wing.” Sharon is, and always was, both extremely bright and compassionate beyond words. She is also insightful in a way that I found the first two doctors I had were not, and if the third was, I did not have a chance to find out because I saw her only 4 times. It is true that Sharon had the advantage of having known me well, if 17 years ago, but still, she seems to have this ability to size up a situation, at least with me, and both to calm me if necessary and to suggest a solution that simply fits…I have to say that I felt especially well taken care of. Sharon made sure she saw me every afternoon, though this was above and beyond the call of any duty.

This description scarcely does my stay at this hospital justice. Although, like any hospitalization, it was not an easy stay, nonetheless I can only say that I cannot thank Sharon and the Natchaug staff enough for all that she and they did for me.

(PS Forgive any typos I have not yet corrected but it is getting late and I am too tired to go back and check for them at the present time…Lazy me!)

Appetite, Eating, Nutrition, Schizophrenia, Zyprex

Symptoms, Zyprexa and Recovery Again

October 21, 2010 Phoebe Sparrow Wagner 4 Comments

images — Zyprexa: "The miracle and the monster"

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

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

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

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

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

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

ALS, Art and artwork, Book, Poetry, Uncategorized, Wisdom House, Writing

GREETINGS FROM WISDOM HOUSE! (Plus an unrelated word or two about PARANOIA)

August 29, 2010 Phoebe Sparrow Wagner 2 Comments

This figure in the labyrinth is a lovely photo by Sr Jo-Ann Iannotti OP — Photo by Sr Jo-Ann Iannotti OP

I hope I am not encroaching on Sr Jo-Ann Iannotti’s copyright, by sharing this photo, but if I am I trust she will let me know. In any event, this is one of hers and it is everywhere at Wisdom House. I believe it is a beautiful example (if that is the proper word for it) of the spirit of Wisdom House. Of course, the physical labyrinth, is stunning by itself, but somehow this photo captures the experience of walking it and the process of meditating and “being there” in a way that mere words describing likely could not. Surely, if nothing else, this photo alone is a wonderful way to “advertise” Wisdom House, if it ever needed such a thing. If you can, visit http://www.wisdomhouse.org and look at the virtual tour photo gallery. That way, you will get a good idea of what the place looks like, and perhaps get something of the flavor of people’s first impression. I know that even the first time I came here, despite my misery concerning all that silence, I knew it was a special place…

Jo-Ann says she has no idea who the woman in the labyrinth center is, that it was a fortuitous shot and nothing more. Frankly, though, I suspect getting the photo took more than mere luck, even just to have been there to capture it! It exquisitely represents both the spirituality of this place as well as peace and peacefulness.

Clearly, you can tell where I am: at Wisdom House again, having a good time this time. I only wish I did not have to depart tomorrow.Even though I spend most of my time alone, the mere presence of other people, laughing and talking and obviously having a great time, buoys my own spirits and makes me laugh aloud myself. I think it is great that they are laughing so uproariously, and it is great to see everyone with their doors wide open, people, women my age, sitting on each other’s beds, gabbing like college girls. The lovely thing too, about Wisdom House in general is the absolute faith in people’s basic trustworthiness: NO one has a key to their rooms, and no one seems to feel worried about anyone entering or stealing a thing. I frequently leave my computer and writing equipment right out in the open on the sun porch, without the least qualm, feeling secure in the knowledge that everything will be just as I left it when I return. Indeed, the sense of trust that I know Jo-Ann has in people is infectious, and I somehow know that everyone who comes here is trustworthy at least for as long as they are here, even if they might not be all the time when they are not.

Now, I may be naive, but I too have been known to be overly trusting, and I think that is a better option than not trusting people. At the same time, though, I can be extremely paranoid as you know, and I do mean “at the same time…” I suppose that is difficult to comprehend: I will simultaneously give away whatever I can, if I feel I own too much and yet also feel as if people are secretly stealing from me, taking things I need out from under me, without even asking or telling me, which makes me angry, because I am already generous, and never ask for a single thing in return, but I’m sorry and feel bad to admit it, but somethings I am not ready to simply have things taken from me without my say so! I feel guilty about this, though, as if I am so attached to material things that I cannot part with something that someone else needs more than I do (for why else would someone resort to stealing it???). Why do I need to be so attached to anything, that is, to any mere object? It will never save your life or your soul!

I am drifting though…forgive me.

One great thing about this weekend here is that despite my having slept till noon today (after spending several days before last night with very little sleep, and even last night beginning to fear for my brain and my sanity due to sleeplessness as I was up till 4am involuntarily) I have pretty much gotten the book organized and put together. Now, that means only that I have made the organizational decisions, which is the major part of the problem. But I needs must (!) still go through the actual computer manuscript and change it, to make it conform to these editorial decisions. Not extremely difficult, just time consuming. At the same time, certain poems need editing and some rewriting/fixing. This I enjoy, the perfecting of the lines I don’t feel are quite right yet, but it takes time and energy. (I even have a two relatively new poems to add!) Alas, I will not be able to come up here to take the time for myself to do nothing else. Too bad, as it has been very convenient and much more than that. It has been, well, useful in the sense that I have been productive “to the max,” able to say NO to email and phone calls, not even walking with Diane L or doing laundry or cleaning or shopping, just writing all day. I suppose taking my usual 2 miles walk would be a good thing, but for just a weekend here, I would rather not…And although I brought art supplies just in case, I haven’t even taken out my sketch book, that is how good the writing, and the editing, have been going!

—————————————————————————-

Speaking of the labyrinth at Wisdom House as I did at the top of the post, let me segue into a few words about paranoia: I have not walked the labyrinth, nor even approached it. The closest I have come is to sit at the top of the stairs looking down at it relatively from afar. The very idea of “doing it” makes me feel both rather shy and then scared to do so. I am in fact scare that God might strike me down, should I have such temerity as to try it. I am also squeamish, not sure I could relax and not feel paranoid, not feel so much on display that I could not concentrate or let myself be “unaware of being observed” — whether I am in fact under observation or not.

That of course is the essence of paranoia: it matters not a fig whether something is really happening, it matters not another fig if someone’s really after you or really against you: if you feel it, if your amygdala is working overtime to generate that feeling, the intense feeling of fear that it is meant to generate, well, that’s it. That is how you are going to feel. And “the feeling is primary.” That’s what Dr O told me time and time again. You feel the fear first, and primarily, and then the story or reason for feeling it attaches to it. But if the fear gets entrenched or doesn’t go away, the story,, that is, the brain’s explanation for the feelings of fear only gets more entrenched, because how else can you deal with fear? It is extremely difficult to feel fear unmitigated without somehow understanding it as coming from somewhere, or being stimulated by something, having a cause or reason. The brain always wants to make sense of things, and it does this whether one “wants to” or not.

So even though I am aware of what paranoia is, I have never been able to control my thoughts when it is happening. It is only after the fact that I can, now, sometimes, look back on a difficult situation and with a clearer head understand how I might in fact have been paranoid in my behavior due to my fear- induced understanding of what was going on. It is very very difficult to override such feelings, esp on such a fundamental level.

I wish I could write more now, but I’d better to get back to my writing before I have to get back to sleep. As it is, it is 1:50 A.M. and we — Ann W drove here with me — the other fellowship person — have to drive home tomorrow around noon. I wish dearly it were not so, but there you have it. For now, I will leave you with a poem that will go into the manuscript of my second book of poems, which I call at least for now (several people have been enthusiastic about the title, except my father), LEARNING TO SEE IN THREE DIMENSIONS. I share it with you now, because while still unpublished, I do not think I will seek publication for it elsewhere, separately…The first one, for my old (and former, but possibly dead now) friend Roland, was previously published, but in a much different version. I apologize if the lines come out with large spaces between them, but the cut and pasting function never seems to allow single spaces… OR stanzas for that matter, as this poem was originally broken up inot five different stanzas but now appears to be in only one long one… The second poem is about Joe, and describes my own encounter with fear of botulism, which has similar symptoms to ALS — so I feared — and my nostalgia for his voice, which I will never hear again, except on his answering machine, and on one or two micro-cassette tapes we made some years ago…

FOR A FRIEND SUCCUMBING TO AIDS, 1980s

For Roland

This could be your whole life,

thumbing a ride to wherever the cars are going,

the casual, tossed out hellos and good-byes

that turn around the axle of your quick life —

that far, just that far, and then you will stay,

forcing a stranger’s town into the shape of home.

Yet you’ve lived a dozen lives — in the Keys

with the one you finally loved, in western Portugal,

Nova Scotia. Last year, already marked, you spent

the winter in your bed,which just fit in a backyard shed

in Vernon, Connecticut. And there was a life

to accommodate each place, its sweetness and pain.

When we met, you taught me the local architecture,

the difference between Georgian and Greek Revival,

and you thanked me for the poems you gave me.

Then you called late one night, drunk enough to over-

dose. Thoughtlessly, I rescued you, a dying man…

You never forgave nor spoke to me again.

Now once in a while a car slows, pondering

your beard, your emaciation, the known and unknown

risks, sees you finally, and explodes away from the shoulder

where you stand, all its doors locked simultaneously

against those Kaposi’s inflorescences that stain

your dying…Roland, Roland, don’t you know

we all die in shame and alone? We die, perhaps,

not far from home, or perhaps, like you, wandering,

waiting for the one car to cross the bridge

whose toll is so high we all pay with our lives.

WORRYWART

Tonight I’m up late worrying

about a badly canned chestnut puree

and botulism, which is useless

since I’ll know soon enough from

what the Merck Manual describes as

“difficulty speaking or swallowing,

drooping eyelids, double vision,

lassitude and weakness progressing

to paralysis” that I have it

or not. Not very likely with only

130 cases in the U.S. in a year,

but as I said, I worry, and worry attaches

to anything: leprosy, asteroids falling

from the sky, dirt on your hands.

Most people worry too much

about things that won’t matter

after six months. My friend doesn’t

have to worry about those. He is

losing his speech to Lou Gehrig’s. In six

months who knows what won’t work

any longer or which will matter

most. His assistive device says

the words he types, but how I miss

the sound of his voice, which I’ve forgotten

except when I call and the old

machine picks up: Joe speaking.

I can’t answer the phone right now

but I’ll call you back as soon as I can.

Blog, Psychiatry, Schizophrenia, Uncategorized, Writing

Delusions of Grandeur

August 6, 2010 Phoebe Sparrow Wagner 1 Comment

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

________________________________________________________

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

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

Delusions of Grandeur

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

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

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

_______________________________________________________

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

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

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

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

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

delusion of persecution a delusion that one is being attacked, harassed, persecuted, cheated, or conspired against.

delusion of reference a delusional conviction that ordinary events, objects, or behaviors of others have particular and unusual meanings specifically for oneself.

Now, thinking about the problem I had when I first wrote about DoG, take that fellow I met, the putative song-writer of all John Lennon’s songs. He was not a happy guy. He gave not the slightest appearance of being thrilled that his songs were so popular and that Lennon had chosen them out of all the offerings he could have picked to sing and record. He claimed that he had given them freely, and wanted neither fame nor fortune, as I recall. But what troubled him, it seemed to me, what that “we,” the — I dunno what you would call “us” — ordinary people, not the rich and famous, not the celebrities with whom Lennon would have hobnobbed, but the (where did I get this word?) lumpen-prole. Actually, I think it was rather much smaller than that, even. I think what troubled him was that other patients and staff members in the hospital (at that particular time) didn’t care, appreciate, value or even believe his great contribution to the musical world. Nevertheless, despite the use of very controversial ECT (shock treatments — which were rarely used in schizophrenia, and even today are not used often for SZ) his delusion persisted throughout his stay, and by the time I was ready for discharge after 2 months, he was being transferred to a longer stay facility.

Needless to say, whether a delusion of grandeur is “positive”, which is to say that the power one arrogates to oneself is “good” –one is God or Michelangelo or John Lennon’s songwriter, or whether it is “negative” in the sense that one believes one has the power of The Black Plague, the Great Influenza or Satan etc, there can on occasion be little else to distinguish them. Unbelieved, scoffed at, dismissed, ignored, no one thrives. For some reason too, and again this is solely from the point of view of my experience, people with schizophrenia experience this dismissal, this isolation (from and by others) much more often than those with bipolar illness. This is not so incomprehensible either.

Someone who experiences mania may and often does espouse vastly grandiose delusions, but they can at first be so ebullient, so enormously cheerful and expansive (I think of poets such as Walt Whitman, whose Leaves of Grass, written and rewritten so many times, and so long and expansive itself it almost screams manic-depression — if you can forgive an exceedingly amateur diagnosis) that people are drawn to them, at least at first and for a time. In the grips of mania, a person can convince “anyone to do anything” they are that persuasive and indeed charming, in every sense of the word. But at a minimum, most do not drive everyone away from them, not at least in the beginning. So when a manic person says they wrote the songs that John Lennon sang, one is tempted to at least half believe them, and say, “Hey, you did? Cool! Tell me more.” But that fellow in the hospital, no one so much as listened to him, nor gave him the time of day when he went into his “thing” about Lennon’s songs, and so he was simply left alone to talk to himself.

Hmmm, have I wandered off the topic, or gone too far astray from where I was supposed to be heading? Well, if I have, forgive me. It’s the sort of thing I do all the time in my journal, and frankly it is far too late at night for me to remedy it, alas. So I will stop here, take a stab at proofreading, and hope I have written at least a few things for you to ponder.

As you know, I will be away from the 14th through the 21st, at the Writers’ Fellowship, so if I do not write before then, never fear. I shall write when I get home. (On the other hand, since a Silent Retreat will be going on at the same time, and since there is also Wi-Fi connectivity in the main social area or somewhere — and no one there to socialize with, who knows, I might even avail myself of the internet, and post something from there!)

Get to bed and sleep tight, all youse who are still up with me.

PS I do not know why the paragraphs in the last half keep running together but they simply will not separate no matter how many spaces I edit in between them…sorry!

ALS, Art and artwork, Uncategorized, Writing

Writing Fellowship at Interfaith Center

July 29, 2010 Phoebe Sparrow Wagner 2 Comments

Sorry for my long silence. Things have been busy at best, sometimes just plain hectic.

On the good side, though, this: the Writing Fellowship. A place called Wisdom House in the northwest hills of Connecticut offered free fellowships of 2-10 days for low-income writers from this area to come and stay to work on a writing project. I applied immediately, wanting time to organize, come up with a title, and send out my second book of poems to the Barnard women’s second book contest. Well, after speaking to my references and to my new psychiatrist, they accepted me, the sister in charge calling me last night at 9pm to give me the news. (As my friend, Leila, put it when I told her how late the director called, “nuns do not keep bankers’ hours!”)

Now the only reservation I have vis a vis the fellowship is that it is going to be held while the rest of the center is on a “silent retreat”. This means that everyone else, aside from the two other writers and me, will voluntarily not be talking the entire time. According to Leila, they will not be looking at others or even raising their eyes. While I wanted time to write, I have to admit I anticipated a more convivial atmosphere, or at least a less daunting one. This does not sound exactly friendly. Spiritual, yes, but not friendly. Sr Jo-Ann does, on the other hand, and she has offered her help in any way she can (since I have been more than open about my illness) but I don’t know that she understands quite how difficult I may find this. Even the problem of getting to the dining hall, the speaking one or the silent one, or eating with other people, should I manage to get into the building wherever it is, may pose a huge obstacle, if my experience at the art and crafts center two years ago is any predictor.

Well, I am determined to go, so I will not let my reservations, nor even the tears I shed last night in sheer terror stop me. I must confess however that I am not without mixed emotions in face of this overwhelming silence — and the resulting loneliness or something much worse — I fear I may confront.

On a somewhat brighter note, for six week, I took an art class in New Haven, at the Creative Arts Workshop. I wanted to learn the rock bottom basics, which I figured I needed to start with. Even though I have successfully painted some portraits, I know I need to learn fundamental techniques, both in drawing and painting so I’m not just floundering around, painting more in hope than with real confidence and skill. But getting to the class meant that I had to drive to New Haven — on the interstate — for the first time in more than 20 years. Unable to drive home that same night, I spent two days a week there, staying at my parents’ condo, usually with my father there (my mother was usually at the shore, at the other house). I enjoyed that part of it almost as much as the class. We were so long estranged that I love just seeing him and getting to talk with him, no matter what we talk about.

The class might easily have been too much for me. Three hours of drawing could have sapped all my energy and taken the enjoyment out of it. Instead, somehow the time just winged away, and after the first class, which was the most tiring because I had not yet adjusted to how long a span of time 3 hours was, I got into the rhythm, and never once left early. In fact, I often left with the teacher, just so I talk with her about art.

Now, I say all that as if it were easy and not problematic at all. Certainly no one in the class would have any idea that I feel as I do, but in truth I became quite certain, and remain so, that the teacher soon grew– how do I put it? — sick of me. Overwhelmed by me. Found me overbearing and overly enthusiastic and therefore unpleasant. I know my presence was too much for her to take and so I tried to tone it down, tried not to ask too many questions or talk too much so I stopped staying after class, or showing her what I had done during the week…And frankly, I am a little scared that if I sign up for her next class, which will be a continuation of the last one, it will upset her and she won’t want me there.

In point of fact, I felt the entire class was laughing at me most of the time, that they agreed with her and that they mocked me whenever I left to use the bathroom or to wash my hands of the charcoal that we used so often.

It was only just before the final class, when I brought my sketch pad and showed two people what I had been practicing, that they seemed to realize that I was serious about drawing and art, and not just a foolish older woman taking a class for entertainment. One young woman, Jennie, actually talked to me then, and said I was “very talented.” When she asked for my Facebook page, I gave her the name Pam Wagner, which of course she will never be able to locate me with, alas, as I would be happy to communicate with her.

Nevertheless, I remain wary of the teacher, and of taking her next class, lest I be more than unwelcome. Lest I be bothersome and actively hated. I feel it incumbent upon me to spread myself around, spread the burden around, spread the miasma I cause as wide and therefore as thinly as possible so as not to sicken anyone seriously. The only real solution I can think of though is to completely shut up and be as minimal a presence there as I can. To not be visible in any way, to make no sound or impression…To do the work, and learn what I can, without, so to speak, making a mark. That way I won’t bother anyone or disturb the peace, or anyone’s peace of mind.

Then there are less positive aspect of being “busy” — Well, no, I cannot dig into this at the moment, except to say that I need to take a break from seeing Joe. Joe, if you recall, is my long-time friend (24+ years), who has Lou Gehrig’s Disease and has been in hospital for 3 years, mostly paralyzed and on a ventilator. I have visited him almost every week, sometimes twice a week, all of that time, but now I need to take some time for myself, take some time to think about what to do.. It is true that I have sometimes been away for as many as 6 weeks, but that was when I was hospitalized, and while to Joe it may feel only as if I am absent — who cares why!– to me it is not voluntary time off and certainly no vacation!

I love Joe, but only as a friend, not as a girlfriend despite what people think. And if the people in the hospital believe otherwise, it is only because I told Joe when he first became ill, that I would “be his girlfriend” — the one dream he always cherished and held out for and hoped would come to pass for some 24 years! And mostly because it was the one gift I could give him, knowing that it was a dying man’s wish-come-true.

The problem is that when he was in fact dying, when he had terrible aspiration pneumonia and could not breathe without assistance (at which point, most people with ALS, or Lou Gehrig’s, opt to die, knowing what the future holds) he asked to be put on a ventilator. Hence, for the past 3 years, I have had to act the part of devoted “girlfriend” (completely non-sexual, though, just as our relationship has always been). And it has long been assumed that my love for Joe is the sole driver behind my visits. Not pure loyalty, mind you, but in some sense my own selfish need to be with him. It seems not to have occurred to anyone that maybe I do it mostly for him, to help him and keep him company…rather than because I myself want anything from it at all.

This is not to say that I don’t enjoy seeing Joe, or that I resent spending time with him. Most of the time I do not, or when I do, it is only because I feel I cannot say, No, I cannot come today, or worse, No, I do not want to come today, not even when I haven’t slept and am utterly exhausted. Usually when or after I visit, I feel better in some sense — at least about us. I feel less guilty and more needed (a double-edged sword!)

But I admit that it is extremely tiring to have to stand up the entire visit — an hour or two — and pay exquisitely close attention in order to understand what his computer (which takes eons to do it) translates from his spelling into speech. When I finally get home after the 30 minute ride back with Josephine, I am wiped out for hours. Even on a good day, the rest of the afternoon is shot just because of visiting him, and that is true even when I only stay an hour.

Well, I said I wasn’t going to go into it, esp not with details, so I will leave that alone, except to say that recently we had a big — what was it? Altercation? Spat? Misunderstanding? Who knows what to call it, but it left me me feeling unappreciated, taken for granted, and most of all, just plain angry. Worse, it induced this exhausted feeling in me that left me hopeless and desperate. That is why I wrote Joe and told him I needed some time off, needed time to reflect and think about things. I did not ask him for it, nor tell him what I needed it for, nor how long it would take. I did reassure him I would be back. But otherwise I simply stated my needs and informed him what I was going to do about it.

I haven’t heard from him since, but unless he is still upset or angry with me, which would be unlike him, he is simply giving me the space I need.

That is all I have the energy and time for tonight. I hope to go out for another of the 2 mile walks that a friend and I have set for ourselves to do as often as we can. We are trying to get in 10 miles a week, but so far I think the best we have done is maybe 8 miles. Still, that is MUCH better than doing nothing at all, which was my usual, until we got together to spur each other on. Usually it is she who gets me up and over to the park to meet her, and I who keeps her going at a great clip. So we help one another and get our gabbing done into the bargain.

Thanks for your patience. I have another entry planned, and hope to work on it tonight for posting tomorrow or the next day — about delusions of grandeur and other symptoms.

	elizachucls on A Death of a Friend from ALS
	muzzy7 on BONES ARE BEAUTIFUL TOO by Wac…
	Phoebe Sparrow Wagne… on A Death of a Friend from ALS
	stevenwesterrmann on A Death of a Friend from ALS
	Scarlett on worth repeating and rereading…

WAGblog: Dum Spiro Spero

Tag Archives: schizophrenia symptoms

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Delusions of Grandeur

Delusions of Grandeur

Writing Fellowship at Interfaith Center

"While I breathe, I hope"

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STATEMENT TO N-7 TREATMENT TEAM & CEO OF MIDDLESEX HOSPITAL et al.

TO MY PROTECTORS

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

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WORRYWART

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Delusions of Grandeur

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"While I breathe, I hope"