Am I opinionated or what? But someone has to SAY these things!!! Peace!
Am I opinionated or what? But someone has to SAY these things!!! Peace!
New work in progress by pamela spiro wagner, a large collage about 2′ by 3′ made of tiny scraps of torn up reproductions of Gustav Klimt’s artwork and reassembled as my version of The Kiss…
Dear Readers, here I am again, some scant four months after getting out of the Vermont state hospital unit in Rutland, Vermont, after two years of nearly nonstop institutionalizations, and i am dedicated to the proposition that i will never again see the inside of another mental health facility in this state, or any other state for that matter. Nor will i allow myself to be lied to again by a practitioner of mental health care, a subject i consider almost completely bogus, both the diagnosis of so-called mental disorders and their almost universally dangerous “treatments.”
In this spirit of rejecting the mental health system, rejecting even the non-system, except insofar as I need assistance in getting out of it, and rejecting *any* and all mental illness diagnosis, i decided to take a course in creativity for five days in Newfane, Vermont, just to try my hand at something outside the usual realm of “recovery-” and or madness-oriented activities.
While this ended up being, frankly, a bust — for reasons i will explain, i can report that i really liked the people i met there, some of whom came from as far away as the UK. As for the course itself, I feel that a requirement of valor means that i leave this at “the less said, the better.” I admit, however, that the teacher, a certain Robert Fritz of self-proclaimed international renown, seems to have been taking out his private pique on me ever since the course ended, for leaving the class early, on a few days, and for not praising him lavishly, or even, god knows, “enough.”
So be it, so be it. If he is so small as to exact such petty revenges, i myself need not stoop to his level.
Alas, the course ended up depleting me deeply and the sole worthwhile lesson it left me with concerned “structural tension.” This, Fritz repeated literally ad infinitum, or at least ad nauseam, all day long for five days, 8 hours a day. Sadly, the one time we did worthwhile hands-on practice, when he *first* outlined this notion and gave us a narrative structure — take point A and reverse it to point B (with a character, crisis and certain developing plot points) around which to easily design a monologue — Fritz then gave us an hour to write a piece in the voice of a single person, and was rewarded when every single person in the class wrote what i thought was a professionally competent piece, this was never to be repeated.
How much more he could have taught us and built on that, had he used the example of what we had learned and done and our confidence to “grow on and go on…” but instead he opted only for more of the same old same old, which was just going over the same ground again and again, with analyzing music video after music video but doing it FOR us, not even having us participate in any meaningful way. Readers, it truly appeared that class participation in any real sense was simply too threatening for this teacher, who was not one of those who felt he could learn anything from his students, no matter their age and life experiences…
No more recriminations on my part. I could not have known this would happen, especially since we were provided no clues, no syllabus, no handout that gave any hint as to Robert’s plans…I went in every day, every single day, and to every session with (dimming but) renewed hope that things would change, right to the last session of the last day…To my dismay and disappointment and growing exhaustion, it never did.
At least i enjoyed the monologue- writing exercise. The following was mine, which is fiction, though it was based on someone i know pretty well (and he knows who he is! )
I, Winton Wooster the third, had sex for 30 years with one man and one man only, Arturo, whom I’d met in Culinary Arts school and absolutely despised. It took me another three years and five other men, one woman, and an Electrolux, before I came to realize that it was Arturo to whom I was attracted and loved with all my heart and soul and body. “Over The Rainbow” sung by Izzy Kamakawiwo’ole was our song.
Some people think gay men can’t be monogamous. That is so not true, so not true. I might have been promiscuous before Arturo, but A.A, that is After Arturo, I never looked away, that is until…well, how do I explain this?
It all started with cars. And collections. Collections of cars. And collections of everything else under the sun. I had the car collection, and I had the other collections. I had Kewpie dolls and Christ statuettes and I had spoons and books of spoonerisms, and I had jackknives and jack-in-the-boxes, I had bowls and bowling ball collections. If there was something to be collected, I collected it and more. I collected art and books, and books of art and china and vintage Chinese clothing and if you think there was no space left in my three-story house, that is saying nothing. I rented space in several other houses, my clients’ houses, which I cleaned each week, and those were soon filled with my collections as well. As for the cars? I had seventeen cars and that was only after culling them down from a high of thirty-seven.
As for Arturo? He had one. One car, and no collections. Only an affection for zinnias, which he called the gay flower and he grew tons of them, for me. His car was named Ada, and she was a 1987 Toyota Tercel. I always said I didn’t think they still made the Tercel that year, but he showed me the papers and proved that they had. Ada was pale yellow, a custom color, and still had the original fabric on her seats and the same original everything, just a tad creaky and fading. I joked with Arturo that we too were creaky and fading. Now, to tell a gay man of 55 that he is beginning to fade and creak is dicey at best, but we were not just old lovers, we were practically brothers, so the degree of his taking offense surprised me. But then he retorted that I shouldn’t talk, since I needed Viagra more often than not and that was only when I managed to get interested enough to take it.
Oooh, that got me where it hurt. But he wasn’t wrong. The thing is, I had once had enormous sex drive along with everything else but along the way, things seem to have just dissipated. I don’t know why exactly. But it was that remark that crystallized an amorphous dissatisfaction into the huge lump of cruel coal it was: Arturo was the source of my problems and my discontent. If I hadn’t been supporting him, if he didn’t live in my house, I would have more space for my things, and furthermore I would find someone I could, frankly, feel something for and well, get it up for. Period.
The end of our partnership came one night during a quarrel about my car collection, which was occupying several other garages as well as parking spaces in town. Several times a year during snow storms we had to play a desperate game of move the cars – in order to stay ahead of the tow trucks and the tickets to get them out of wherever they might be impounded. Arturo was sick of this, and frankly so was I and I wanted, I proposed, and I had actually had the plans secretly approved by the town zoning board, to build a giant garage in the back yard, a “garage-mahal” that would house my entire car collection on site. The problem was that in order to finance it, I wanted Arturo to pay rent, to help out, that is, with my second mortgage.
Arturo was hurt and he said so in no uncertain terms. He had lived with me and paid me in so many other ways, he told me, how could I do this to him? He cooked, he cleaned and he shopped and he did everything in the house to have made it a home for us and now I expected him to pay rent like a mere tenant? Firmly and obdurately I stood my ground and said, yes.
With tears in his eyes, for which I admit I felt a small pang, but not as big a pang as I ought to have, he turned around, climbed the stairs to our bedroom and packed a suitcase. Then I heard him tread the stairs downward, open the front door, and close it with a thud.
I was such a cad I did not even ask him where he was going or see him off. I felt a relief just to be rid of him. I can’t even say why. It was only the next morning that I discovered, in the small car shed I was planning within the week to tear down and replace with my garage-mahal, Arturo’s pale yellow Toyota Tercel, which he had left behind, for reasons I did not know and could not divine. After he didn’t pick it up for a month, I decided that he likely could not afford the payments or the gas, now that I was not paying for everything. Nevertheless, I could not bring myself to get rid of it, so I paid the insurance and made sure the registration was up to date and kept it on the first floor of the new enormous garage that was soon built on the back of my property.
I did not hear from Arturo at all after that. I learned from friends that he was renting a small first floor apartment on the outskirts of town, in exchange for taking care of the owners’ property. He was rumored to have neither phone nor email. I did not try to contact him but got absorbed instead in my own busy-ness.
In the garage-mahal there was room for all of my vehicles, all the ones in driving condition, including the Bentley for which I had paid only $22,000.00 but kept in mint condition. I had some cars on lifts and others were withdrawn down into specially constructed rooms underground. Only my special fire engine red Mustang and Arturo’s Tercel were in the front bay, readily available for driving.
I spent many of my leisure hours polishing and cleaning the cars, as the house had gone to seed, ever since Arturo was not there to pick up after me or sort the collected items. Also, it was – to be honest — lonely. I was able to have sex after Viagra, yes, but then only to have the Electrolux as my partner — what was the point? I gave up sex altogether. But that made me feel even worse. I tried the gay dances and party scene, and once even an “orgy” that a friend urged me to go to. But all of that just made the loneliness worse.
One night in the summer, sitting in a deck chair, under the bright LED lighting in the garage-mahal, I thought I heard someone’s radio playing a yard away. I got up to listen and heard our favorite song, “Over the Rainbow” performed by Izzy. I stole down the street, and listened to the radio on a porch nearby, and found myself standing in a clump of tall bright-petalled flowers as if by coincidence. No coincidence, I thought, there are no coincidences. I am a total cad, but I can’t let this be. I have left the love of my life and I need him back.
I ran back to the garage-mahal and jumped into the red Mustang, but the starter just made a coughing sound, as if it had just then given up the ghost. “Damn!” I yelled, then I realized that Arturo’s Tercel was still insured and ought to be drivable. Ought to be. Hell, yes, why not?
It was. As if it knew just where it was going the Tercel seemed to drive me all by itself to a small pink stucco house on the edge of town, a house surrounded by trees and with planters filled to the brim with zinnias. To this day I don’t know how it was that Arturo happened to be there, or why he did not seem surprised or even taken aback that I’d come. But without questioning anything, he just smiled warmly, opened the door and opened his arms.
In the next few days I will be writing and having a guest post from someone but today I want to write about a frustration that has got my goat bigtime. It has to do with the letter that I wrote to Kathryn Power, “bigwig” at SAMHSA or, for those of you who wonder what the letters stand for, the Substance Abuse Mental Health Services Administration, for Region One, which covers the New England region.
Apparently she took my letter very seriously, which I did not know. This may have been because I never received her reply, if she sent one, having given her the wrong return address ( I did not know the proper one where I was to be living at MRR in Brattleboro.) Or it may be because she failed to copy me on any of the emails she sent to any of the parties she subsequently wrote to, both in the Federal government and at the state level. Whatever the case may be, apparently she wrote to several officials, including the Connecticut Department of Mental Health and Addiction Services and possibly the Department of Protection and Advocacy ( which dumped me completely after assuring Susan Stefan, Atty at law known for her work against seclusion and restraints, that they were working closely with me). I never knew this, nor have I learned the outcome of these contacts. I only just today received faxed records of these initial emails.
So I know that Ms Power contacted Mirian Dephin-Rittmon who is the new commissioner of mental health in Connecticut. I would like to think that Ms Dephin-Rittmon responded somehow, but I have no such evidence, and if the response from Patricia Rehmer, her predecessor, is any hint of what I could expect, then the answer will b: NOTHING, nada, zilch, a big fat zero. And why is that? Because in Connecticut the Commissioner of Mental Health and Addiction Services, while she may nominally be serving all citizens with mental health problems, actually has no such mandate. Not at all. She serves in fact ONLY those who are hospitalized in STATE facilities, which are extremely limited, and how lucky for her, and in fact for them, because they get protections that none of the rest of us ever got.
It was not that we were not indigent and also on Medicare and Medicaid, and also on SSDI and possibly on SSI. Most of the patients at general hospital psychiatric units in Connecticut, if they are repeat offenders of any sort, are usually on assistance of this kind. How could they not be? Most have been “disabilified” – that is, disabled and made into disabled-thinking persons — by medications if not by illness and by the systematic undermining of their personhood by the State. (I know, that is an argument that needs to be enlarged, but elsewhere, elsewhere…) But they are not in State facilities, decidedly not. Why is that? Because courtesy of the State Government, most state facilities, especially for adults, have been closed down or turned into prisons.
So if you need a hospital, you must go to a general hospital psychiatric unit where the Commissioner of Mental Health and the Department of Mental Health actually have no jurisdiction or sway. Literally the only way you can get into the safety zone of a State Hospital, that is to say, into the ONLY state hospital that now exists in Connecticut, Connecticut Valley Hospital, is by being thought such a bother to the nursing staff at a general hospital that they want to get rid of you, and they send you off to CVH for “longer term treatment.”
But this, mind you, is a punishment, it is not something that they do out of caring or attempts to render better treatment. Not at all, and I should know. After all, I have been threatened with such “treatment” several times, and the last time was when I was at New Britain Hospital in 2014. There, because I was labeled “a borderline” and therefore dismissed as manipulative and dramatic. Every word I said was disregarded…Nothing I could say was taken seriously. And every act was regarded as willful and deliberate. So they could justify punishment and torture as my just desserts, and they tortured me by dragging me to the seclusion cell for swearing under my breath, and four-pointed me for hitting my head lightly against a wall, after they stripped me naked in the cell and I begged for a blanket they pointblank refused me ….
You see the picture? I was “so impossible to deal with” that they were going to “send me away” as punishment and in revenge.
We all knew this, we all knew that CVH was the last stop, their last resort and final punishment for those of us so obstreperous as to object to their outrageous brutalities and keep objecting rather than bow our heads and submit. In the end, because I was so determined to get out, to escape to Vermont, I did, I gave in and gave up and submitted, and it worked. I played their game and got out of their abysmal unit. I submitted, for which I cannot forgive myself…
My point here though is that it is only when a patient has been deemed such a pain in the ass that she is sent away, sent down the river to CVH that Pat Rehmer or Miriam Delphin-Rittmon ever comes into the matter. Before then, they are not interested or concerned with what happens or happened for that matter. They do not give a damn. Not that they don’t care about torturous seclusion cells or four-point restraints in general, it just ain’t their juris-my-dicktion to care about what happens to patients in city hospitals. Sorry, but it ain’t. So they don’t pay attention. They just can’t and so they don’t. It is, as my friend Josephine says, always as if newly minting the expression, what it is!
That said, there is Capitol Region and the Connecticut Mental Health Center too, but they serve exclusively the uninsured, so that of course was not for me, who have been covered by Medicare and Medicaid for years. So lucky me, I could luckily go to New Britain General Hospital and be tortured by the likes of Michael E Balkunas, with utter impunity because DMHAS has no oversight or jurisdiction over these psychiatric units, NONE WHATSOEVER.
Did Kathryn Power not understand this when she wrote to Miss Miriam? Apparently not. She might have believed that the Commissioner of Mental Health in Connecticut could or would do something to help a mentally ill elderly citizen who had been tortured in a psychiatric unit in Connecticut. Foolish Kathryn! And then maybe she thought that Protection and Advocacy could be called upon to help me as well? Oh, what a sad, sad day for Ms Power when she learned, or did she, that P and A in Connecticut has no interest in helping anyone? Did she really think I had not applied myself to anyone for help before I went to her? Where does she think I have been for the last year? Doing nothing? I have tried and tried and tried and tried. But no one answers and no one does a thing!
Oh, I could laugh if I were not so broken and so sick at heart. But I will not let the fuckers win because then the torture will just continue unabated. No, I will continue to nip and snap and irritate Mikey B. and the nurses at W-1 at HOCC in New Britain until they themselves cry “uncle” and change their ways. I will not stop until they are stopped in their brutality and stop hurting people. I will never cease this campaign until I know that patients at W-1 are safe from harm or W-1 is closed down and I am certain that Dr. Balkunas has lost his license for good.
But the worst thing was that Ms Power finally sent the letter to the Office of Civil Rights (OCR) in Boston which was directed to open a Complaint! Yes! But just whne I had hope for this, bizarrely enough, they closed it on the basis, get this, that my complaint “alleges abuse at MANCHESTER MEMORIAL HOSPITAL IN APRIL OF 2008″ — Say what?????? Huh? !!!!! My letter does no such thing. It never mentions Manchester Hospital at all. Why would it? I had never even been there in 2008 or before 2009. And the first time I was EVER at MMH was in October of 2009, so WTF??? THis is so bizarre and so outrageous and so disgraceful a reason to deny my complaint a basis to go forward that I have had it…To say in the first paragraph that I allege torture at New Britain Hospital in 2014 and then in the fourth or fifth paragraph to somehow segue in this extreme non-sequitor to alleging something in Manchester Hospital in 2008, when I was NEVER THERE…just gets me down completely, because you know, no one in the chain of information who saw this and they did, NO ONE CALLED THE OCR on this or told them to get their act together and fix their mistake,.no they essentially let it go and made me suck it up…
FUCK THE THE ASSHOLES I cannot take this shit any longer. FUCK THE WORLD I WANT TO GET OFF! I have had it. I’ve had it, No one gives a damn about anything…I give up.
I have been asked, by The Recall Center http://www.recallcenter.com, see also http://www.recallcenter.com/xarelto/side-effects/ to “talk about my medications” so here I am, talking about my “favorite psychotropic drug, NOT..”: Abilify.
Why do I take Abilify?
I take Abilify, well, why do I take Abilify? I was prescribed Abilify because of the diagnosis of schizophrenia many years ago, and I usually take it along with another anti-psychotic drug (Geodon). But frankly the reason that I, I myself, take Abilify for now has nothing to do with psychosis or schizophrenia. I take Abilify simply and only because I have this weird feeling that it helps me write and do art. Ever since I have been taking it, or the two drugs together, I have had no trouble doing art at any time or even writing when I want to. The extra plus is that I can finish longer term projects, ones that I start on one day and have to finish over time. In the past this was a problem, but it seems to not be so difficult for me any more. I do not know for certain whether this is due to the effects of the Abilify/Geodon combination, but it feels like it, since I was never capable of finishing projects so easily and reliably before then. On the other hand, I believe that I can do these things myself now, and that once I get used to living here, in my new state of Vermont, I will choose to sloooowly go off the medications for good.
How do I remember to take my medicine?
In truth, I often forget to take my medications, but for the past thirteen years I had a Visiting Nurse come to remind me. And now that I live in another state, where this service is not available, I have a med tray that is delivered weekly. I hope that I will be able, by seeing this tray openly on display on my table, to remember to take the ones I want. At least for as long as I want to take them.
I have been asked about side effects of this drug, but I would say, 1) all “side effects” of drugs are the effects of the drug, and you cannot tell a person that she is only suffering “side effects” especially if they are serious enough to cause distress. 2) there are very serious and troubling effects possible with Abilify, so my experience is not necessarily typical 3) I used to feel very irritable on Abilify, but no longer 4) usually I add Geodon to help me sleep and calm the anxiety that Abilify can induce
Where do I go for Medical support? I just a few weeks ago moved to Vermont, so I do not yet have a Primary Care Provider, but I do have a psychiatric nurse practitioner who will see me – so far, at any rate – once a month. For medical issues, at this time, I do not know whom I will see, but in Connecticut I used to have an APRN at a doctor’s office. I also was able to get to an Urgent Care center easily, in CT. That is not possible here in rural VT. So in the event of a medical emergency, I do not know exactly what I would do, except call 911 and hope for the best!
Before taking Abilify, or ANY anti-psychotic drug, here are the questions that I think you should ask your doctors: You should ask, first of all, why he or she is prescribing an anti-psychotic medication for you. Does he or she believe you are psychotic? If not, why prescribe such a powerful and possibly devastating drug? And if so, why? Doctors should be willing to answer this openly and honestly and if they will not, then I do not believe that you should listen to their advice, but get a second opinion. You never know who might derive financial gains from prescribing a medication that is not available generically. Also, why is your doctor not being honest with you? I would never feel comfortable in a situation like that…
Ask your doctor what to expect after taking this drug and when to expect the effects, good or bad. What does he or she anticipate you will experience as a benefit and what he or she thinks you might experience on the down side? Ask them to be honest about this and why they feel it is worth the cost/benefit ratio to you.
Abilify is extremely expensive and non-generic until 2015, when a generic form is scheduled to become available. So if you can, I would ask your doctors about why they are prescribing this particular drug and not another. There may be very good reasons for it, such as a low incidence of weight gain, and little sedation, at least at doses below 15mg. Nevertheless, I would want to be certain that there were no financial inducements such as stock holdings in the pharmaceutical company involved etc.
There are ALWAYS risks involved when you take pscho-active medications, or any drug, but anti-psychotic drugs can be especially problematic for some people. Even though Abilify causes fewer problems with massive weight gain, for many people this is not always the case and weight gain as well as Type 2 diabetes, with or without weight increase has been known to occur on Abilify. Over-activation and irritability have been reported frequently, in my experience. And many people I know who have taken Abilify have told me that they have trouble sleeping if they take it at night.
Published research suggests that 30mg of Abilify is no more “effective” than 15mg. From my own experience, I can only say that at 15 mg Abilify is quite activating but at 20-30mg it becomes suddenly sedating and less helpful. This is why so many people refer to Abilify dosing as “Less is more.” They mean in some sense that the lower doses work better than the higher ones, unless the sole goal is sedation, in which case I would say there are better drugs for that purpose and safer ones.
As for drug interactions, I am not aware of any important ones.
Finally, the three main things I wish I knew before taking Abilify are what I wish I’d known before I took ANY anti-psychotic drug many years ago: that if I took what they gave me, and kept taking it, 1) I might be disabled for the rest of my life 2) it might induce chronic/episodic psychosis – i.e. stop the natural process of recovery in its tracks 3) NOT that my brain’s neurochemistry was already “out of balance” but that my brain and its neurochemistry would be changed and destabilized by the drug itself…
That is what I wish I knew before taking Abilify. Before I take any drug from now on, I will find out these things and determine for myself whether the cost/benefit ratio really makes sense.
But on the whole I would say that NO DRUG developed in the last 20 years has been adequately or honestly researched for any pharma company to make a claim about either its efficacy or its safety. NONE. So I would on that basis probably never take a new drug from now on. There is not a drug company out there that I trust to have done ANY new brain research, since it’s all based on junk and garbage theories that arose from “back researching” Thorazine, which was bogus in the first place. So why would I want to take a drug that was developed from research coming out of that cesspit?
I am 62 years old. I am NOT suicidal and I certainly do not want MDs with murder on their brains to euthanize me with their psycho-drugs, or to use me as some guinea pig to determine how much control they can have over people…NO MORE DRUGs, NO MORE DOCTORS, NO MORE HOSPITALS AND HOSPITAL ABUSES.
I may take a couple of drugs today in order to survive the transition from CT to VT, but you must understand that my brain was already damaged from the years of having been given them against my will. So I HAVE AN ALREADY DAMAGED BRAIN, from the medications I’ve already taken.
I do not advise anyone with a more or less intact brain to take an anti-psychotic drug, not ever, not if you can avoid it and certainly not for “the rest of your life.” NEVER take any drug on an ongoing, “forever” basis. ALWAYS re-evaluate your need for it.
And that is all I am going to say about Abilify. If you take Abilify for “depression” you have come to the wrong place. Nevertheless, I have written a blog post just for you. Do a search on “Add Abilify” and you should find it. But you won’t like it any more than this one. Sorry about that.
I would put my entire New Britain General Hospital chart online except that i only have access at this time to a small portion of my MAY–JUNE 2014 record as they decided that 1000 pages was too many to send to my psychiatrist the first time around. She requested the entire chart, but lazily they sent the discharge summary and the ED chart. In the meantime we have put in an immediate request for the rest and they said they are sending those ASAP.
Interestingly, the first page of the ED report states that availability of Advance Directive is “unknown.” Nevertheless, the ED triage notes state, with apparent disapproval and resentment, that “pt presents with details instructions [sic] on how to provide her care..” ie the advance directive (which it seems was immediately disregarded as an insult to their knowledge)…
ED Nurses note by “Seneilya… RN Assumed care of patient. Patient arrived via EMS after VNA called for increased anxiety. EMS reports patient refused to speak but wrote down, “Sunglasses block hate. I don’t want to hurt anybody.” On admissions patient refused to speak to this RN. Patient pointed at her head when asked why she was here. Patient nodded “yes” when asked if she was hearing voices but refused to answer other questions. …(next sentence indecipherable)
Report given to Beth RN who assumed care of patient…
At 15:19 Beth RN wrote the following:
“Pt not responding verbally to this nurse, this nurse looked through her art book and placed it back on her stretcher then pt picked it up and slammed it down on the stretcher and pointed her finger at the book. Unable to get pt to communicate. Pt pulled sheets over her head. Pt still in street clothes, will pt [sic] as is until examined by MD.”
What is not said here is that this nurse, “Beth” never asked me whether she might look at my artbook. She simply took it as her right to look at it, and then did so. She refused to allow me any means of communication, however, but demanded that I speak to her. When I was unable to do this, she did not inquire in any fashion as to why I was not speaking nor apparently make any inquiries from anyone else as to why this was so. If she had provided me with means to write I might have been able to tell her what had happened in the previous two weeks at home. Instead, she was so furious at my lack of speech that she belligerently refused to permit any other mode of communication but made assumptions that were extremely detrimental.
I was later given a hospital gown and told to dress myself or I would be forcibly assisted in doing so.
This is what Beth RN records what happened after I was provided with a meal that I could not eat because it was not vegetarian. Note that before this, I had begged gesturally for a means to communicate and all such implements had been outright refused me. This had led to my slamming the artbook on the stretcher in frustration and pulling the sheets over my eyes, effectively silenced.
Now with my meal, I at last had a means to write.
“Pt ate nothing,” Beth RN reports, “[but she] wrote messages with ketchup and French fries, ‘I need a crayon.” This nurse told pt she needs to speak because she can, pt threw everything on her table on the floor, food juice, etc. Pt then picked up fries from the floor and started eating them and gathered more and putting them in the bed with her and kicked the other food away in the OBS area.”
“Pt went to the BR, seen coming from the BR with paper towels then pt observed writing with her finger on a paper towel with something, first thinking it must be ketchup, then maybe jelly, then this nurse go up to check and pt found to be writing with her own feces, some paper was able to be removed, other paper with large piece of BM pt through at this nurse. Pt moved to room 42 [seclusion] then pt got OOB and snuck around corner and tried to attack this nurse from behind, public safety was able to get to pt first, pt to be medicated and restrained. Pt licking feces off fingers, would not let nurse wash her hands…”
Now I want to tell my side of this story because they invented this story out of whole cloth. Yes, parts of it are true, but out of order and not the way Beth related it. This is important because the way she wrote it makes me seem like I spontaneously attacked her out of the blue, which never happened. However, I was also privy to a conversation by the so called Public Safety officers, AKA Guards, who in front of me decided to create this story in order to justify restraining me, because they simply wanted an excuse.
What really happened was that due to my needing to communicate, I wrote my needs with ketchup on the paper box the meal came in, but that was taken away from me, and Beth, rather than telling/asking me to speak came up to me with a NOTE she had written to me (the irony of this is beyond belief except that it is true!) saying, “I will not speak to you or give you anything to write with until you start speaking to me…” Oh GOD! It was incredible. At this point, I was livid and also desperate to write so I had no choice but to use my own feces, which didn’t strike me as awful as it might have…What other choices did I have???? None at all.
So I did as she wrote and I tried to write journal entries about what was happening to me on paper towels with my own fecal material. This of course did not go over too well. However, I never snuck up behind Beth and tried to assault her. What happened was what I wrote in the second rap song. She snuck up on me and simply SNATCHED my artwork book out from under me and raced away with it, holding it up in triumph. I was so furious, without even a thought as to any possible consequences, that I raced behind her intending only to snatch it back. That was all. I never assaulted her, I never so much as touched her. I only grabbed for the book that she had not asked for from me. PERIOD.
That was when they dragged me to “Room 42” and when the guards, holding me down, decided they wanted an excuse to restrain me, and though one of them cautioned that they really had no reason to do so, the other told him not to worry, “we’ll find a reason.” And as I learned shortly thereafter from accusations made by Dr Balkunas, they did so.
But an accusation made isn’t necessarily true, as we all know, and just because Dr Balkunas accused me of LYING or of making up a story doesn’t mean that was true either. He never asked me what did happen. He never tried to find out the real events of that evening, he simply designated me as manipulative and “volitional” essentially a prime-time liar…Which meant that this started a snowball of a disaster in the making. Because by the time he finally saw me on the W-1 Psych Unit the next day, he had already made the decision not to let me communicate by writing and therefore he meant not to let me tell him what was going on from the first. He had decided not to recognize the extreme state of desperation and frustration this induced, but to see only violence and willfulness and to deal with this by punishing me with torture. PERIOD.
But I am getting ahead of myself. Michael E Balkunas, MD , the self- proclaimed god of W-1, claimed to have been there when this happened, when the guards said that I just shot up off the gurney and attacked Beth, the nurse, from behind. But the record does not bear this out. In fact, he never saw me at all until the next day and all the orders were written by other physicians. Dr Balkunas’s name is not even mentioned until the afternoon of May 13 when it says only that he was at my bedside to evaluate me. Even then, from what I recall, I was so sedated after multiple forced meds that I was unable to answer any question. I was unable to speak in any event, so given the face that he refused me the tools to write with, this was as unproductive an evaluation as possible.
I was to be admitted to W-1 on the basis of his snap judgments from that evaluation,: from which he drew the diagnosis that I had a probable “borderline personality disorder.”
How could he possibly diagnose a personality disorder, something that takes time to discern in a person, after seeing me after such an extremely traumatic circumstance, for less than three minutes? In point of fact, what likely happened was that he took an immediate disliking to me, and decided to diagnose me with something that in his mind justified his egregious treatment of me as well as his immediately not allowing me to write instead of speaking. I cannot otherwise explain his behavior . Nor can I understand his apparent surprise at mine when I did not respond to him as he expected. Why did he think I would respond positively when he refused to speak to me unless I was verbal? Why did he think that coercion would bring about a positive reaction? Did he truly think this would be helpful and restorative? I doubt it. I think he just didn’t like me and so he opted as most men do to abuse and punishe me out of rage. Because he was fed up, he lost his temper with me from the get-go…
I recall thinking about the rage in his voice and how out of control he sounded as he sent me to “Seclusion! Seclusion! “ He actually screamed this directive to the guards as they deliberately grabbed my torn rotator cuff which they had been told about in the emergency room (so they would use it to their advantage) propelling me headlong down the hallway. “Restraints! Restraints!” he shouted in a shrill and angry voice.This was retributive and nothing else. He was furious and I was going to learn not to fuck with Michael Edward Balkunas, head of the W-I general psychiatry unit in the Hospital of Central Connecticut in New Britain or he would know the reason why!
But don’t let me put words in Dr. Michael Edward Balkunas’s mouth. Here is what he wrote, in his words. He wrote, surprise, surprise that “while in seclusion I would often scream” . Yet he states with apparent resentment that I had brought items with me “such as a large advanced directive” The nursing notes repeat this as if this is an evil thing, and proceed to disregard every item on it with relish. Not only that but Balkunas from the first accuses me of behaving with “volition” although he does not actually adduce any facts or observations to back up this thinking, except that I brought with me the large advance directive and a published book of the art work I had done.
This artbook, by the way, was was kept from me the entire time I was on the unit on the pretext that it would be very harmful for the other patients if they were to see it.I was led to believe that the mere glimpse of my artwork would hurt them. This was emphasized to me so many times that I felt guilty not only for having brought it with me, but for having drawn the pictures at all. The RNs seemed to enjoy my feeling so bad about it….
Balkunas further claims that he “asked if I would like to speak to him, PLEASE” but what he fails to note is that he refused to permit me any mode of communication other than verbally and that he peremptorily walked out on me when I could not utter a word. He notes that, Yes, I did throw my bed-clothes at him, but does not mention that he would not even look at my gestures in response.. Instead, he stood up in disgust and turned on his heels and strode out.
I admit that having already been so abused in the ED I was hideously upset at being unable to make him stay, unable even to make him HEAR me, that I did the only thing I could do to MAKE ANY NOISE at all, WHICH WAS TO THROW THINGS…
Both my brother and my psychiatrist claim that they told him pointblank not to draw baseless and dangerous conclusions from my traumatized behavior, that he would be making a mistake and would injure me badly if he did so. But he was of course the superman that all in-hospital psychiatrists are, the MR RIGHT that can finally fuck* you and get it right. SO he took one look at me and said, THAT IS OBVIOUSLY A CASE OF BPD if ever I saw one… Of course! And NATURALLY Michael E Balkunas is MR RIGHT, The one who fucks* you and you finally thank him for it, OF COURSE!
So THANK YOU Michael E Balkunas, You FUCKED* me OVER royally and you must have enjoyed it, because you fucked* me up the ass too. And I had to thank you in the end, didn’t I? Thanking you for fucking* me was the only I could earn my way to discharge, You forced* me to bend over and beg you to fuck* me up the ass and then Thank you again for abusing me just like any asshole who abuses women. You murdered* me, and halfway through slicing* my throat you made me beg you to fuck* me, and I did because it was the only hope I had that you might let me off with my life…Finally, with my throat half sliced* and my asshole fucked* wide open, you said, OKAY, now you can leave, you are free, you can go home now. I have had my way with you so go away…
So THANK YOU FOR FUCKING* WITH ME MICHAEL EDWARD BALKUNAS MD, GOD, THANK YOU FOR LETTING ME GO….I owe you my life, because you let me go and you didn’t in fact murder my body, I am still alive, though barely, you only tortured me and you only fucked* me and murdered my soul. You killed my spirit but you did leave my body somewhat intact so I could walk out of there and for that I had to pretend to be grateful and to thank you every day for a week, so I mouthed the words, Thank you Michael Balkunas for fucking* me and letting me leave stll alive….
But I wish you had killed me dead. Instead, you manipulated me into thanking you, for fucking* me over. You didn’t kill me quite. You made me thank you and thank you and thank you…and so now what do I do, you asshole- fucker*, but live with the torture you inflicted and wish you would crawl into your early grave somewhere and explode into a ball of maggotry.
*metaphorically, of course, but in a very real way nonetheless…So I feel it every day and wish I were dead! Note that in every other instance where an * is missing I usually mean my words literally and without any sense of metaphor whatsoever.
NOTE that this is the link to my GOOGLE + review that I posted shortly after my stay at New Britain General Hospital..I think I was rather measured in my appraisal, after all was said and done.
WARNING: THIS IS A VERY ANGRY POST. It contains angry swearing language and is “not nice”…If you only want to “like” me then click LIKE without reading, as usual. (You know who you are.) If you want to read what I wrote, then go ahead, but be forewarned: you won’t like what you read.
I am in the middle of a move to Vermont, the state of my dreams, the state where I was well for six weeks and where I was happy and in a happy state. Was I in a dream state? Am I in a dream state to think that I can make it there, move there in one piece? And make a new life?
Du must dein leben andern…You must change your life. That’s the last line of the most important poem I ever read in my life, “The Archaic Torso of Apollo” by Rainer Maria Rilke, which I read at least 30 years ago, and never forgot. Yet I never changed my life until now. Oh, I have tried, in my way, I have tried. I have tried many times to stop taking my so-called anti-psychotic medications and go it alone, but always informed the relevant medical personnel in my life, with disastrous results. I believe it was the informing that caused the disasters however, NOT the stopping of my meds. Belief, and expectation play a huge role in what happens to people, and when EVERYONE around you anticipates the worst and looks for it, when everyone KNOWs you will become psychotic without the drugs, somehow they make it happen. It happens all the time, so that even if you wouldn’t become psychotic otherwise, they force it on you, or look so hard for symptoms that they see what might not be there. And then the hospital forces the drugs on you and you react with anger and traumatized combativeness and they react with more force and brutality and it just escalates and everyone tells you you MUST take the meds from now on OR ELSE.
But it ain’t true, because the meds are bogus as anyone who has ever been drugged up with Haldol would tell you, if they were honest. Haldol, the doctors’ favorite tranquilizer and “anti-psychotic” drug, does diddly-squat for psychosis. It only drugs you out of your gourd so you shut the fuck up about it. But it doesn’t change a thing inside, it just quiets you down so you don’t make the noise you did, and you submit. You submit and no one gives a shit about what is really going on.
Except that I didn’t really quiet down on Haldol, because every time Yale held me down for injections in the ass, I retaliated by stripping my clothing off and shitting on the floor of my non-seclusion seclusion room, and smearing it all over the place. That was my retaliation for their punishing me with a torture drug that did nothing for me only against me. And they knew it perfectly well. So I punished them with my SHIT!
Fuck them! Let the aides call me “Pig” and “Swine,” I didn’t care. No one believed me when I told them what that aide was doing. But I got back at him by calling him “rapist” every time he grabbed me to keep me in that room. “Darien, the Rapist!” I’d scream, just to call attention to his physically attacking me. “Rapist!” So he got back at me by muttering,”Pig, swine…” under his breath when no one else could hear him, just so it seemed like I was hallucinating. But I wasn’t. I knew what was what, and I knew what he was doing.
Haldol is a shit drug, by the way. It does NOTHING to help anyone but punish them and torture them, but the thing is, it is a model for all the other anti-psychotic drugs. Keep that in mind, because none of the other AP drugs works any better than Haldol and you are fooling yourselves if you think they do. You want to believe the drugs help you, and your belief makes the drugs work. That is all. It is the placebo effect, pure and simple. But the drugs also harm you. Why else would you be obese or tremulous or any of the other detrimental things that have happened since you started taking anti-psychotic drugs? Do you think they are harmless? Do you think that diabetes just happened to you out of the blue? No, the drugs not only offer only a placebo treatment that you could get on your own, but they cause obesity and diabetes as well. And a whole host of other problems.
But far be it from me to tell you what to do. I just know that I am not going to continue with this garbage. I will NOT be told by anyone hired by the drug companies and instructed by them as well that I should take these drugs for the rest of my SHORTENED life..BULLSHIT!
Look, you do what you want. If you want to live 25 years less than you would have otherwise, fine. FUCK ME! I don’t give a shit what you do, but I will not lie to myself any longer. These drugs do nothing. They have never kept me sane or cured my psychotic episodes. They do nothing for me, and they only hurt me. If you were honest with yourself you might admit the same thing.
Fuck me. I don’t give a shit. Do whatever suits you, I’m outta here, I’m moving to Vermont and getting off this shit and having a better life than this bullshit in Connecticut. I’m moving on and moving out, and CHANGING MY LIFE. Du must dein Leben andern. You people can go on and take your pills and stay sick and play the good patient and pretend that Haldol and all the other derivative drugs “help” you. I don’t give a good goddam. I won’t live that lie any longer. The drugs are bogus and if you bothered to do your homework and read about them, you would know what I know. And If you were honest about your life you would admit that they do nothing for you too.
Go ahead, leave my blog, don’t read what I write any more. I don’t care. I’m sick of popularity contests and “LIKES” by people who don’t bother to read what I write. Don’t LIKE me! I don’t care. You haven’t even read this far anyway. Don’t LIKE me! I don’t give a shit. I’m moving to Vermont. Connecticut and all of you can go blow.
(Sorry, but I am sick of BS and I had to get this off my chest. I don’t care who dis-likes me after this blog post. You either want me to speak my truth or you don’t…But I won’t lie any longer or be diplomatic either. Take it or leave it.)
Lots to say about the situation I am in up here in Vermont, where my assistant, the person hired to help me and make sure things go okay turned out to be a common criminal. But I am too tired and worn out by having to deal with the mess left in her wake to write about it. Suffice it to say that she stole my debit/credit card number and racked up multiple charges, was apparently drinking even in the mornings without my knowing it, and driving me at the same time. She had a hand bag full of narcotics not all of them prescribed to her, but even if they had been, what was she doing, taking narcotics and drinking and driving?!
Things were even worse than that, but as I said, I am exhausted and cannot go into it all now. Needless to say, she has been fired and is gone, is out of here…But she has left a mess and misery in her wake all around. What a mess maker! And I think she was the one who was stealing from me all the while last winter when I had people staying with me to prevent a hospitalization…Why did I once trust her implicitly? Where do I find these people and WHY do I trust them at all?
I should have known something was wrong when I saw her handbag full of Percocet and Xanax and VIcodin and fentanyl patches etc. It was ridiculous…and then to have her buy a case of beer? But I thought “well, a beer once in a while is harmless.”…I didn’t know she was drinking at breakfast and also while driving…I am such a dimwit!
Do you work at a job and earn a living while you take anti-psychotic drugs? Do you support a family or take care of one while your wage-earner partner can keep her or his job without worrying about your sanity? Good, then the “anti-psychotic” pills you take (or I’ll add in for good measure, god help us all, the “anti-depressant” pills) are doing what we were always told they were supposed to do. Or if you don’t work or care for a family, if not, do you at least live a fulfilling single’s life, with good capable friends and family and a worthwhile occupying activity that keeps your mind free of craziness and despondency the preponderance of the time? Terrific!Then those pills, whether they be antipsychotic or anti-depressant pills actually function and you are one lucky dude or chick. I say to you, whoever you are, All Cheers and GO FOR IT! Please do not worry about anything further I say in this or any other blog post. Whatever I write from here on in, whatever I say that you do not agree with, IT IS NOT INTENDED FOR YOU. Why? Because by your report, YOUR PILLS WORK and they do a bloody good job of it. So who’s to tell you to change anything? You have no complaints and aside from the possibility that your brain might sustain a little shrinkage, if research about such things proves correct, you have nothing to worry about. In truth, most aging brains shrink and sustain bits of damage along the way. Lots of things can happen…most of them not drug related at all. One simply cannot worry about a “what if” future, when the present is so bright.
So I repeat, IF you happen to be one of those lucky ones I have described and actually have no complaints, IF, better than that, if you find that your anti-psychotic drug or anti-depressant pills work terrifically well, you have had no relapses, suffer no terrible trade-offs in terms of side effects, then stop reading this blog post right this minute. Why? Because I have nothing to offer you and nothing to say to you. Okay? You don’t need me, and you won’t want to hear what I am going to say to the others of us out there whose experience has been somewhat to radically different.
But this is a SHOUT OUT to you, there, who don’t like your drugs and don’t want to take them. Or find them minimally helpful, or wonder frankly whether they really do any of what the docs tell you they do, forewarned is forearmed…This post is going to be about the charade of anti-psychotic drugs, for the most part, about the fact that they do not in fact function in the anti-schizophrenia fashion that you have been told. (I likely won’t have the time or energy at this point, being on AP drugs myself, to get into the appalling farce of what are called anti-depressants…You could turn to MAD IN AMERICA by Robert Whitaker for a take on those — just check out his chapter on Prozac for a taste…) It isn’t that AP drugs do nothing at all. They do attack the brain’s neurotransmitter levels, in some fashion or another. And not just the vaunted dopamine and or serotonin levels either. No, most atypical antipsychotic drugs have effects on histamine, glutamine, noradrenaline and acetylcholine and likely a whole host of other brain chemicals we haven’t even scratched the surface of, in the sense of knowing their function in the brain, or in any part of the brain for that matter.
Do you know, did you know, that the Dopamine Hypothesis, the fundmental reason why there are antipsychotic drugs out there now in so many burgeoning numbers was always bogus? It never held water, ever. There was NEVER any reason to believe that dopamine caused schizophrenia, or that a dyspfucntional level of dopamine lay behind the majority of schizophrenic symptoms. It was a bold-faced and bald-pated lie, that’s because it is as old as the hills and as tiring. You don’t have schizophrenia the way one has diabetes, because you have a chemical imbalance in your neurotrnamitters that these neat little AP drugs resolve and rebalance. Sorry, folks, but that has been baloney ever since we all started developing parkinsonism and KNEW, just KNEW that something was terribly wrong with these miracle drugs that made us feel so terrible.
Did you know that it used to be the criteria for a true neuroleptic, the only way they knew they had a functioning adequate drug, was because it successfully induced parkinsonism in patients. That is, if it induced adequate BRAIN DAMAGE, then they knew it would “work” against schizophrenia. Because the theory was, both in ECT and insulin coma, as it was in early AP drugs like Thorazine and Haldol that you had to induce brain damage to get a therapeutic effect in the illness. Crazy no? No, not at all, not when you stood to make ZILLIONS and Gazilliions of dollars on these drugs. Not only could you treat a hospialized crazy person with these drugs, and make them “better” and push them out of the hospital, but you could set up a plan for future care, AFTER CARE, that specified that JUST like diabetes, a person had to keep taking these drugs. You never just recovered from an illness like schizophrenia, no. The drugs were miracles yes, but not like antibiotics, They never cured you. they just were a treatment that you had to keep taking. The Gift that keeps on giving…at least for the Pharmaceutical companies who dreamed up the protocol. If they could get a person onto the AP drugs, once, and mandate legally or via a persuasive mental health system that the patient stay on them for life, well then, what a system, and what a money maker!
Oh my eye! What a load of hog wash. All they ever did was dream up neuroleptic (“brain seizing”) drugs that physically subdued people and made them more amenable to nursing. So the hospital nurses could be more nursey nursey and kinder, and more kindly disposed to patients who were now drooling and dulled and seemed much genuinely sick, and the patients could be seen as more ill and less hostile and unpleasant to be around, less difficult to treat qua patients..
But it was a strange transformation, because the more sick the patients were made by taking these neuroleptic drugs, the less they were treated like the troubled and suffering PEOPLE they were to begin with. Once a patient, they assumed that role, and the whole cycle began and has never stopped to this day. “Schizophrenia is an illness just like diabetes.” That was the canard I was told in 1980 — we are still being handed the same disgusting lie! — when I was first officially diagnosed with the condition, or told the name to my face at any rate. “You’ll never recover, and you will likely have relapses, but you won’t be a back wards patient if you take these pills like a good girl, and do as I tell you. No schizophrenia isn’t a death sentence these days but it IS a life sentence…” So what did I do? I swallowed my 500mg of Melleril, yes i did, and I told the doctor I was feeling much better, yes I did. Because frankly I didn’t know how I felt and I felt OBLIGED to tell the doctor what he wanted to hear. How else was I going to get out of the hospital and get off those horrible pills that made me put on 20 pounds in three weeks and made me feel so dull and sluggish and tired all the time? Besides, how could I possibly, in those conditions, KNOW how I felt, when the nurses themsevlves colluded to tell me how much better I looked and was doing? I knew I couldn’t read or think for myself any longer. But they told me that that was my negative symptoms and had nothing to do with the drugs. It was a problem I would have to come to terms with by talking with a therapist…which was a good thing, that they suggested I see a therapist. Back in those days, it was often frowned upon that ANYONE with schizophrenia actually do any talking to anyone at all. After all, if you talked about yourself or your illness, you might upset yourself or the whole applecart…You might actually go crazy again, you were that UNSTABLE! No talk therapy was usually frowned upon for “schizophrenics.” It was seen as not good for them, and destabilizing. What we needed was daily meds and mouth checks and maybe day treatment with a hours job to do each day, like capping test tubes for the lab to keep us busy. Lucky was he or she who could function as a bus boy or table setter. Most of us barely made it to day treatment on time, before sacking out on a couch somewhere for a long snooze to let the morning’s dose of thorazine 1000mg or Melleril 800mg wear off a little before coffee hour or lunch time.
Some of us actually turned blue on high doses of Chlorpromazine, and she eventually died, at the age of 28. There was a lot of relapses and some suicides, but NO ONE actually went out and got a job and quit the hospital and got better. No, because the whole damned system was set up in such a way that once you were set up on anti-psychotic drugs, with a diagnosis of schizophrenia, you were put on social security disability payments for life,..and drugs for life followed, and the trap ensued that meant your whole life was a rolling down hill of poverty and more drug taking and relapses…until maybe something amazing happened to get you out of the systematic rut the psychiatric system had placed you in.
MAYBE you found someone you fell in love with, someone who not only would take care of you, but who hated to see you dull and passionless and sexless on the drugs and encouraged you to SLOWLY wean yourself off of them. And maybe it happened to a few of us that it was a success, because love can really conquer all, even the notion that schizophrenia is a life-long hopeless illness. If you got off the drugs in the right way, slowly, and stopped seeing the doctor who told you you would definitely relapse, maybe just maybe you didn’t. Maybe your sex life came back and you found out it was better than Haldol and thorazine, and better than being dulled by the system’s poverty and being sick. And once in a while that person’s husband was so loving and encouraging that they got married and moved away and she stayed well enough to take up a hobby that turned out to make a little money by itself. So she turned it into a business, and miracle of miracles, she didn’t fall into the trap of SSDI after all but stayed well without the AP drugs and became a businesswoman without enough time to think about being schizophrenic again…
But alas, that didn’t happen very often. Not nearly often enough. There were far too many tragedies compared to the rare success story. Too many people getting diagnosed with schizopohrenia, and then when the fads for multiple personality disorder came, with that, and all the other fads that had to happen because the drug companies had drugs that they needed to sell use on people and they had to have diagnosese to fit the pharmaceutical picture so they could sell the drugs they had on hand. ADHD, autism are only the latest two…
But I digress, I digress, so let me tell me my own story, if I have the time and energy.
I got sucked in. I did. I was hospitalized in 1980, and even before them. But in 1980, as far as I can now recall, I was up late at night, for the third night, in the hospital kitchenette in an absolute sweating panic about my hands. Why? Because I had this strong delusional belief that they were not my own, but that my twin sister had taken them over and controlled them. I could feel them, and in a sense I could see this process happening. And I heard voices telling me that I was in danger. A nurse came in, and asked me why I was up, and in a panic, i told her. I said, somethings wrong with my hands! They aren’t mind, my sister has control of them! And I can’t sleep, I can’t sleep!
Now, the nurse was a kind woman and I think she meant to help, but she couldnt do anything for me but tell me she would call the doctor, who came, in his fashion, running. I was sweating bullets by then, sitting at the empty lunch table, mumbling about my sister and my stolen hands. What could he do, given his own pharma-company training, but offer me some drug assistance and promise me that it would help, that it was what I “needed” in the throes of my illness?
I believed him, I did. And when he came back the next morning, after I had been dosed three times that night with increasing amounts of Melleril until I finally slept, he pronounced that I suffered from the mental version of diabetes. schizophrenia…The rest, well, if it isn’t everyone’s history, it is a version of it. And it involves SSDI and even SSI because I had never been able to work a full time job even before then. And none of the many drugs I took after that ever did anything for me but disable me more than before. And I would stop them and be hospitalized again with what they now suspect is withdrawal psychosis, or could have been. And I would be started back on the drugs, or a long-acting injection that was supposed to prevent hospitalization. It never did much good…I was a basket case, a basket case. I never washed or changed my clothing, or even took off my shoes, not even to go to bed. NO I wore those hiking boots for a good year and a half before they even saw me take off the socks I wore underneath them…
So how much did the AP drugs help me? And when they started to restrain me for paranoid fears and trying to escape a locked unit, did I then say Enough is enough, you cannot torture me, I have schizophrenia? No, I accepted mechanical restraints for three days at a ttime as a form of treatment. One doctor actually told me that schizophrenics don’t respond badly to being tied to a bed for a long time, it helps them, he said, by reducing stimulation…So they did that, and they kept me in seclusion for weeks at a time…until finally I would cry Uncle and take the drug they wanted me on, and go home again, prepared for the next certain relapse, because what else was there….I had a life, yes, but it wasn’t much. It was just hospitals and restraints and drugs that never helped me and cruelty from nurses that didn’t know they were hurting me. And doctors who were damaging me without thinking twice about it. And I didn’t even have the mental wherewithal to know that the drugs were the prime offenders. The PRIME offenders.
It is now 5:30am and I have been up all night. My shoulder hurts, from where i have a slightly torn rotator cuff and frozen shoulder tendonitis… I don’t have a bed, only a recliner I should not sleep in…I am a mess, and I am also NOT going to continue to take my Abilify and Geodon much longer…I cannot. I cannot. I do not know what will happen, but I am too afraid of what will happen if I take it, to take them, though I have never felt they did me more harm than good. I just don;t know what real GOOD they do me.
More later, or on another day. Sorry this was so impassioned.
I have been diagnosed with schizophrenia for nearly forty years and was forcibly medicated and involuntarily hospitalized many times over those decades. Ordering me to take an “anti-psychotic” medication and then physically compelling me to submit to IM injections never got me to a point where I saw the “error of my ways” much less helped me to recover. How can that be? Take my 3-week stay at Yale New Haven Psychiatric Hospital in the summer of 2013. Because I refused the prescribed Zyprexa, I was repeatedly held down and forcibly injected with IM Haldol, a so-called first-generation “anti-psychotic.” Call Haldol an antipsychotic if you will or be honest and just call it a behavioral management drug, it subdued me, yes, it did indeed. It stupefied me. And in the end I cried “Uncle.” But before I surrendered and submitted to their demands, I only got worse, regressing to a degree so pathetic I find it hard to believe it now. But that this happened was a connection the doctors and staff never made,, not even when after I was forcibly injected, I would strip, defecate and write on the wall with my feces.
It seems obvious, at least from my experiences, long and manifold, that involuntary treatment does not work, at least not the way people think it will or should. Over the short run, you can indeed make a person take medication (which is what this is all about in the end, drugs, not something like psychotherapy being forced on anyone…). You can threaten a person with hospitalization “or else,” and frighten her into swallowing pills. And if she does refuse, you can hospitalize someone for refusing and medicate her against will just as you do now to certain in-patients.
You can, if coercion is your game, put certain involuntary in-patients into 4-point restraints, pretending that her very resistance makes her a danger to others, punishing her for fighting the team that holds her down. You can even inject her with so-called “depot” drugs that once in the system continue to work for as long as a month.
Clearly, people break, faced with threats and coercion and many eventually come to accept treatment “voluntarily,” at least for a time. They may even appear to “get better”. Nevertheless this sort of improvement is often shaky at best.
Involuntary — forced — treatment is the worst possible thing you can do to a person with a serious psychiatric condition, especially schizophrenia. Symptom improvement will likely be temporary, even with medication “on board.” I have yet to meet anyone who actually gained that magical “insight” via coerced medication… And given the side effects of all the known drugs, very few people who are not voluntarily in the system consent to take them for long — for good reason.
Moreover, as recent research has shown, there is every reason to suspect that psychoactive drugs, especially the so-called antipsychotic drugs, are far less efficacious in promoting real and permanent recovery than we have been told. However, the effects of trauma and the aftermath of involuntary treatment can be disabling, even permanent. I know; I have been there. As a result of my experiences with forced treatment I now suffer from PTSD in addition to the diagnosis of schizophrenia.
Although at present I choose to attend outpatient treatment, I do not always comply with taking medication, especially when it make me feel bad. I won’t even take meds that others claim alleviate my symptoms. If a drug makes me feel horrible inside, I assert the right to refuse it. Sometimes treatment can be worse than the disease. Alas, because of this, I have, while in-patient, all too frequently been subjected to forced medication hearings, hearings which I believe I was pre-determined to lose, the deck being stacked against me.
At the former Hospital of St Raphael’s in New Haven in 2004, I was not only forced to take the atypical antipsychotic drug Zyprexa, despite the fact that the medication had caused me to gain 60 pounds, elevated my cholesterol and triglycerides sky-high, and made me pre-diabetic. The probate judge, on the instigation of my in-patient psychiatrist, also ordered that I undergo involuntary ECT otherwise known as electro-shock treatments. I was so terrified of the side effects and the real brain damage ECT was inflicting on me, that I literally awoke,mornings, with excrement in my underwear.
In the more recent past, my experience at Manchester Memorial Hospital ECHN in Manchester, CT was just as horrendous. This, along with an equally brutal experience, at Middlesex Hospital in Middletown, Connecticut 6 months later combined to such trauma that I was diagnosed with the additional problem of PTSD. As recently as the winter of 2013, at Hartford Hospital’s Institute of Living, I was threatened with forced ECT, kept in seclusion for three weeks and restrained for nearly twenty hours multiple times. Why? Because as the record states, I was unpredictable and “did not follow directions.”
I would like to tell you about the Manchester Hospital experience in a little detail, as I believe it will give you a “taste” of where IOC, when taken to its logical conclusion, can and will lead.
I was admitted there on a 15-day physician’s emergency certificate (PEC), and the attending, a certain Dr Benjamin Zigun, summarily took me off the two-antipsychotic drug combination, plus an anti-seizure medication and the anti-depressant I had come in on. This drug “cocktail” had worked for me since 2007 without distressing side effects. I was not only willing to take it but I felt it helped me function better than I had in years. But the psychiatrist at Manchester Hospital decided, and I quote, “since you are here, by definition your current meds aren’t working. I will put you on something else.” Did it matter to him that I had already been tried on nearly every other drug on the market, old and new, and none worked as well and with as few side effects as the Abilify/Geodon combination I was then taking? No, he was the doctor and the doctor’s decree was law.
As a result of his ministrations, the “offending meds” were removed and I was again ordered to take Zyprexa, despite its known and severe side effects. Over the next few days, I continued to refuse it. Naturally, having been abruptly withdrawn from all my usual medications, I began to decompensate further, having nothing in my system. A forced medication hearing was held. For some reason, Dr Zigun decided I would not be given Zyprexa after all, but one of the oldest neuroleptics in the PDR, Trilafon. When I objected, he said only that if I refused even a single dose, I would be injected in the buttocks with 5mg Haldol.
All too familiar with Trilafon’s side effects — from akathisia’s maddening restlessness to a constant fine tremor in my fingers, I refused to swallow the pills. But neither would I willingly lie down to take a needle full of “vitamin H,” Haldol being a drug just as awful as Trilafon if not worse. So I resisted, physically, when it came to the nursing staff grabbing me and pinning me to the floor. I fought them when they so much as approached me with the punishment hypodermic.
At first, they just overpowered me, injected me and walked away. But after a few such tussles they started calling “a code” to bring in the goon squad. I do not know how many times this happened but the goon squad consisted of several people including uniformed security guards . Without a pause, they would barge into the room, assault, restrain and inject me, despite my terrified screams.
This sort of violent encounter happened so many times, along with predictable and regular use of 4-point restraints and/or solitary confinement, where I would be locked in their dark, cold seclusion room, that I literally lost track of time. Indeed, but for whatever I managed to record in my journal after each episode, and from their single-viewpoint one-sided hospital chart, I would have no idea what happened during most of that entire three week period at Manchester Hospital, though from my bodily reaction when thinking about it, I know something very bad happened.
Why do I tell you this? Because this sort of aggression, even torture is what forced medication and involuntary treatment lead to much more often than you may want to believe.
If H.R. 4302 passes in the Senate and expanded IOC is instituted in the states where it is now allowed, how precisely do people intend to treat a person with a “mental illness” who does not to want treatment? If a person refuses to leave her apartment to be hospitalized, and is able bodied and physically strong, do they propose to assault, even Taser her, though innocent of a crime? Once she is unconscious and no longer able to resist, do they then intend to hospitalize her against her will so that she can be forcibly medicated, with the threat of 4-point restraints as a back-up if she continues to resist. Or perhaps they expect that trauma itself to scare any individual into compliance?
I am not against all psychiatric treatment. I am definitely not against all psychiatric residential treatment facilities ( including hospital psych units…) But we have curtailed the availability of in-patient beds at present to our detriment, even as we have allowed drug company research scientists and providers to focus almost to the point of tunnel vision on the medical model. This has brought us right to this notion that if we institute IOC, and can force a given individual to take medication, we will be working on a problem that has a real and objectively verified solution. In point of fact, however, there is absolutely no proof that antipsychotic drugs lower violence on the streets or have any effect at all on the incidence of violent crime. That said, if a national IOC law mandated forced treatment, and hospitalization, where are the psychiatric beds to follow through on that mandate? Downsized, in most states to ghosts of their former abundance.
If this is what supporters of H.R, 4302 anticipate and believe in: IM injections, four-point restraints and all, then I must ask: When will you learn that you cannot treat anyone with violence and expect the outcome to be a desirable one? What you propose to do is to subject persons with psychiatric disorders to more trauma and violence than ever. You want to expose them to a“treatment” that is just euphemism for brutality.
I fought back, tooth and nail, biting and clawing the goon squads that descended upon me and attacked me, intending to shackle me by the wrists and ankles to a bed, because as they told me, “ I didn’t follow directions. Yes, I resisted. Who would not have? I was terrified. What did they expect me to do, politely thank them?
This sort of coercion and cruelty masquerading as care doesn’t help anyone get better, it only chases them the heck out of Dodge and as far away from “treatment” as they can get. Oddly enough, little do “Escapees” from treatment such as these know that they might be the lucky ones. As longitudinal studies of treated and untreated individuals with schizophrenia are coming to light, it has become apparent –even Thomas Insel, head of the NIMH admitted this on his blog — that treating – medicating — schizophrenia long-term has had unintended consequences, one of which has been to inhibit complete recovery. By contrast, those persons who walked out or were forced out of treatment, “back wards patients,” seemingly hopeless — it turns out that these people to a much greater degree than those who stayed in the system, recovered on their own, without help, largely by stopping their medications.
A majority of these “lost souls” found themselves only after they ceased taking medication and ceased consuming mental health services. Because they became wage-earning, productive citizens and not mental health service users, many are now “lost” to the mental health system. To experience so few symptoms as to be unknown the to provider community despite past illness, surely this must be accounted the best of all possible outcomes.
IOC works — or doesn’t work — according to a medical model that imposes medication on the unwilling, with no end point, insisting that mental illness is no different from diabetes. But as Dr Insel has admitted, this is not true and apparently never was. New models are needed. Violence is no solution, nor does it cure anyone to impose treatments of dubious value and great harm on those who are different from some mythical “norm. ”
(I sent a version of this to Connecticut’s Senator Blumenthal and several other people, including the New York Times, without response, so I am posting it here for public consumption and comment.)
I know, I know, you have probably seen the commercials, but I am new to television and I only just started to watch them…and I just saw one that has been running probably for years now with the sad little pill that gets people to “add Abilify” to their so-called “anti-depressant” in order to boost its effectiveness. I learned about this advertisement recently from a friend of mine who innocently enough told me, told me, that Abilify is “just another antidepressant”.
Excuse me? I said to her. Abilify is NOT an antidepressant.
“Yes it is,” she insisted. “I saw it on TV.”
“No, Abilify is an atypical antipsychotic drug, not unlike Zyprexa or Risperdal. I don’t know what you are talking about, calling it an antidepressant.”
That’s when she told me about the sad little pill commerical. Well, okay, so the pill isn’t sad, the woman in the commercial supposedly is, and when the nice doctor she sees, adds the nice little Abilify pill to her so-called anti-depressant, she perks right up like an obedient child and, wow, the two pills work like magic to make the world right again. WOWEE!
So again the public is sold two lies, or maybe three or maybe half a dozen. First we are sold the lie that antidepressants do something in the first place. WAIT A MINUTE. Okay, they do do something, I admit it. They change the levels of neurotransmitters in the brain, yes, they do that. They alter something. Yes, and doing something, making a difference, altering anything makes people feel DIFFERENT and doing anything to change people’s feelings about ANYTHING when they are depressed can lead them to feel that it is better than doing nothing. ‘
But you have to understand that taking a mind altering substance to do something, anything at all, just to feel different, is not at all the same thing as actually treating a pre-existing chemical imbalance. And they know now that there is no such thing as a serotonin imbalance in the brains of depressed people. NO SUCH THING. In fact, they cannot figure out why people become depressed at all, but they do know that serotonin levels are not involved in any such simplified ways that the SSRI drugs purport to “treat.” Even Prozac researchers have admitted as much. Prozac researchers knew that their drug did not work way back in the 80s when Prozac first came out. They knew it induced suicidality in a large number of people, but they rushed it onto the market because Lilly needed a blockbuster drug, period to pad their pockets.
But that aside, the researchers to this day know that antidepressants do nothing to actually treat depression, because they have admitted that they do not understand what causes depression.
That said, does anyone who takes an anti-depressant understand what they are doing when their friendly psychiatrist or family doctor “ADDS ABILIFY” to their nice little psychoactive cocktail? Well, in addition to experiencing some or all the terrible but COMMON side effects of, say, Zoloft or Prozac (these are just those for Zoloft):
|Inability to have an Erection||Severe|
|Altered Interest in Having Sexual Intercourse||Severe|
|Chronic Trouble Sleeping||Less Severe|
|Low Energy||Less Severe|
|Excessive Sweating||Less Severe|
|Involuntary Quivering||Less Severe|
|Loss of Appetite||Less Severe|
|Weight Loss||Less Severe|
|Head Pain||Less Severe|
|Feel Like Throwing Up||Less Severe|
|Stomach Cramps||Less Severe|
|Feeling Weak||Less Severe|
they might well experience these COMMON side effect of Abilify:
|A Feeling of Restlessness with Inability to Sit Still||Severe|
|Feeling Restless||Less Severe|
|Incomplete or Infrequent Bowel Movements||Less Severe|
|Chronic Trouble Sleeping||Less Severe|
|Increased Hunger||Less Severe|
|Head Pain||Less Severe|
|Feel Like Throwing Up||Less Severe|
|Throwing Up||Less Severe|
|High Amount of Triglyceride in the Blood||Less Severe|
These are the commonly reported side effects from common antidepressants Celexa and Lexapro: in terms of Psychiatric Disorders, to which one might be told to “add Abilfy”:
Frequent: impaired concentration, amnesia, apathy, depression, increased appetite, aggravated depression, suicide attempt, confusion.
Now, I ask you, everyone, DOES THIS SOUND LIKE A RECIPE FOR CURING DEPRESSION? Any fool would look just at the list of side effects and say, uh, I would be more depressed if I experienced even two of these….But doctors think that people will feel better if they take drugs like these two together, and put up with these side effects, just because they are told that “by adding abilify” and their depression will go away.
The point is, the doctors are IN THE DARK. They read mostly what you do, and they see the same commericals you do. Most of them have no more idea whether the drugs work than you do, and they only know what they are told by the drug reps and the drug companies….DO NOT BELIEVE THEM when they tell you that you have a chemical imbalance. They are either lying to you, or believing a lie they were told by someone else. ASK THEM questions, investigate. Ask precisely what is the correct balance, what are the correct numbers…Do not be sheep. What were the studies showing any proof? Who did the studies and who paid for them? Changes are you won’t get good answers, or if you do, your answers won’t make you any more secure than I am. Because drug companies pay for most of their own studies and they only pay for the results they want, ie what they want to hear…They do not want to hear that Abilify hurts patients, or doesn’t actually work, or that Abilify does not boost Zoloft’s anti-depressant IN-efficacy. No, they want to lie and “prove” a lie or else not prove it by not actually doing the study to prove anything. They want to market the drug and advertise things that have NOT BEEN SHOWN TO BE TRUE AT ALL. They want to market a lie, sell a drug and make money, without doing any research to prove anything, and pick up the pieces billions of dollars later, if at all.
I say, BULL SHIT
My advice? Don’t add Abilify. Add only Sunlight and Truth to everything.
This is a photo of my large drawing of a place in Tuscany named Palazzo Podere or as translated, “Castle Farm.” I only uploaded a small file…Sorry… the details are fuzzy but them’s the breaks.
Things have been up and down, but the last two days were better than before. Largely because of an art therapy session that I found amazingly cathartic. It involved my being asked to make a “three dimensional sculpture” from a sheet of paper, a pair of scissors and some clear tape. I had no idea what to make, nor what would come from it. In fact, I dithered for a while, stymied, rolling a bit of the blue construction paper into a little tube and taping it, desultorily, waiting for inspiration. Nothing. Then suddenly it slammed me. YES! I was making, YES! a bullet for, YES, my very own Glock 9 semi-automatic handgun.
I proceeded to craft a crude gun with a bullet or two and a clip of ammo until I was finally satisfied that I had what I wanted. When I was through, Margaret, the therapist, handed me a sheet of paper on which she had written, “I am” five times. She asked me to look at my paper gun and ammo clip, at any angle I wanted to, and complete the five sentences as I wished. Well, I won’t tell you in great detail, because my answers were were rather gross and violent, what I wrote, except to assure you that when I was through, and it took a while, she asked me, How do you feel?
I had been somewhat tearful as we talked and earlier in the week had been extremely upset and angry, but I now looked at Margaret and with a little surprised smile said, well, you know, I feel…better!
And I did. In fact, when I saw Dr Angela the next day, she noticed the difference immediately. Whereas before I had been nearly screaming, and not looking at her, now I could smile and make eye contact for the first time in months.
Progress on the medication front: Am off all Abilify. Now am dropping the Geodon, slowly. Down 40mg from 160mg. Will be dropping 40mg every 2 weeks. I think. Unless that feels too fast. If I run into trouble , I will slow it down, but Geodon never seemed to do much of anything for me…Maybe I am wrong, it could be I’m unaware of what it does. But in my experience it did little positive for me, and so it should not be too hard to get off it. I just need to be careful not to stop anything too quickly, no matter how eager I am to be off all meds.
I still take some small amounts of Ritalin and Xyrem for narcolepsy, though hugely reduced now that I am not so sedated on antipsychotics and antidepressants and only take 200mg of Topamax. I dunno about that last. I may try to stop it too. But it depends on the olfactory hallucinations and whether or not my migraines are under control.
IN the meantime, I have been busy hiring people to stay with me 24/7 come January, in the event of a crisis, which I have to assume will happen since it always has…So long as I know people will come in and prevent a hospitalization I feel okay about it. Otherwise I would be panicking, thinking that I would ever have to go through such torture. NEVER would I let them do what they did to me at Yale or the IOL again. I will kill myself before they get their hands on me another time. But it won’t happen, because i have aides/nurses/various people hired to help me out now in my own apartment, and they will take care of things so no hospital will be waiting in the wings to torture me. The only thing I need to be sure of is that who ever it is that is going to be with me, they MUST be on board with the NO MEDS thing. NO ONE is going to force meds on me in my own apartment — I don’t care who they are. If they don’t agree with that, if they have a pro-medication agenda, then they are not going to be part of my plan…
To explain the picture/letters above, I was practicing some lettering, briefly, and did not know what I was writing until later…which makes what I wrote all the more interesting a message from my subconscious. Clearly I agree with almost everyone else I have ever heard from: Haldol is the drug from hell! About the rest of it, well, Psychiatrie macht frie derives from the sign that was posted above Auschwitz and other concentration camps during WWII, Arbeit macht frei, or Work makes (you) free. So this transposition is meant to suggest (sardonically) that psychiatry will free you in just the same way… NOT!
What particularly sickens me personally is the damage the fiction called the Dopamine Hypothesis — how an excess of dopamine causes schizophrenia — may have done to the millions of people like me who have taken antipsychotic drugs for decades, unknowingly buying into the medical model and this notion that we somehow had too much dopamine coursing around in our brains.
Life is ALL about dopamine, LIFE has always been about dopamine. Here are some of the human functions to which dopamine is essential
Why on earth would anyone deprive another human being of the one neurotransmitter that allows us to feel good about things? It would seem to be a diabolical plot, if anyone actually did such a thing, right? And yet, for decades right on through today, that is what doctors want us to do, block the transmission of dopamine to the brains of those of us diagnosed with schizophrenia. They know, of course, that it is impossible, that the brain up-regulates the flow of dopamine in such a way as to thwart at least in part the antipsychotic receptor blockade. Homeostasis will be re-established eventually, even if at abnormal levels due to the drug’s presence.*
No one can live without dopamine, after all. But to understand the necessity of dopamine, and that they have known for years that an imbalance of dopamine metabolism is NOT implicated in schizophrenia, and finally to “grok” that they have nonetheless perpetuated the lie that is the “dopamine hypothesis” just boggles the mind with its enormity. How can we believe anything they tell us about negative symptoms, now, when as one website informs us:
“Low D2 receptor-binding is found in people with social anxiety or social phobia. Some features of negative schizophrenia (social withdrawal, apathy, anhedonia) are thought to be related to a low dopaminergic state in certain areas of the brain.”
The atypical AP drugs induce a D2 receptor blockade as a matter of course. After all, if you don’t feel any reward-sense from your life and living, your normal dopamine being in an antipsychotic blockade, why would you want to change your clothes, or take care of yourself, much less bother to go to work or even think? But we have been led to believe that such negative symptoms are part of schizophrenia and NOT part of the drug treatments for it! No one told us they were taking away all our incentive to do anything, to even move or think. They told us they were helping us, not hurting us, not destroying our lives!
Even more diabolical, to my way of thinking is the idea that some doctors actually add an atypical antipsychotic onto the treatment of mere depression. Can you imagine how you would feel if you were taking an SSRI (which is ineffective) and which already deprived you of sexual satisfaction or any sexual feelings at all, and then you are given an adjunctive antipsychotic that subsequently deprives you of dopamine? It might add twenty to forty pounds or even more in no time, up your cholesterol and blood sugar, and then deprive you of any feelings of reward or pleasure…Ah but it will boost your antidepressant’s antidepressant activity? J’en doute fortement… I doubt it highly!
What do the doctors care? Either they bought into the drug company’s literature and haven’t read anything independently since med school…or they are on the take themselves from Big Pharma in some fashion and don’t give a damn.
We need to be on the look out for ourselves, because god knows the doctors are not on our sides, most of them. They cannot be. This is their bread and butter, folks esp the psychiatrists and if they cannot prescribe pills, what will they do? They won’t be “real doctors” any more and their prestige will plummet yet again…OH NO! The fact is, they need to learn to do psychotherapy again, or get out of medicine because they cannot prescribe pills that do not work, and there are none that do! None that do reliably and well or better than placebo. In fact, except for the occasional use of a benzodiazepine, and the judicious use of cognitive enhancers for the proper people, and meds for sleep, I am convinced that precious few drugs in the psychoactive armamentarium are worthy of anything but the dustbin.
I think most are ONLY placebos, if they do anything at all. Frankly. And I say this despite having once written testimonials in praise of Zyprexa and other drugs…I dunno, I dunno. How could Zyprexa be anything except a placebo? It is a dirty drug that hits nearly every known neurotransmitter of importance…And yet we do not know how it does what it does…and it has horrendous side effects. That much we know. Since we do not have any reason to think it is the action on dopamine or serotonin that is the “antipsychotic” activity, in essence we cannot say why or if it does anything at all. ALL the AAPs drugs work on the neurotransmitters in a more or less dirty fashion. In fact the OLDER drugs were less dirty, being more specific to just dopamine!
I reiterate, there is no “chemical imbalance” in schizophrenia, or bipolar “illness’ or in depression. No one has ever proven or shown any such animal ever. Only after patients have taken a drug to “treat” such conditions is there ever an “imbalance” and this imbalance is a direct result of having taken the drug. PLEASE remember this and question your doctors next time they warn you that if you stop your meds your “chemical imbalance” will reassert itself and make you sick again. Ask, “What chemical imbalance and where did it come from? What chemicals and what is the normal level I should have?” I know I know, the doctor will say, dopamine, if you “have” schizophrenia, or “serotonin” if you “have” depression. Lord knows what she will claim if you “have” bipolar tendencies of one sort or another, as so many millions upon millions of Americans these days have been told they now do…But it isn’t true. Not even if they claim it is. There has never been any proof of altered neurotransmitter levels and in fact it is the opposite: drug-naive people with schizophrenia and depression, that is to say, those who have never taken any medication, have been shown to have the exact same dopamine and serotonin levels as anyone else!
As for those who suffer from the condition called “bipolar” — You know, it used to be a very rare condition, manic-depression. Now, you see “bipolars” coming out of the woodwork everywhere. One used to have to have been crazy-manic at least once, to the extent of having been hospitalized to qualify for the diagnosis, and this made sense as it was restrictive and not a broad umbrella. Given that the illness was considered a very serious one, no one wanted to bring too many within the definition. Now, with so many drugs used to “treat” (ha ha ha) the condition, and with the help of DSM IV and 5 to bring patients to the drug companies’ financial assistance, you need only complain of a garden variety “depression” to be counted as bipolar…
But remember: 1) the drug companies treating bipolar etc only want to make money, 2) the drugs treat something — a neurotransmitter imbalance that doesn’t exist 3) bipolarity is a fiction that keeps lengthening, like Pinocchio’s nose, with every newly expanded definition…
Think about malaria, a real illness. It doesn’t make more people ill just because it gets redefined. Malaria is caused by a protozoan (injected through the bite of a mosquito), and it sickens people who are vulnerable to the ravages of that organism inside the body…in the same way each time. You don’t “get” malaria more because a financially- interconnected organization of doctors/drug companies decides to change the definition of what constitutes malaria. No, you get malaria the way people always gotten malaria, largely through not using mosquito nets and other preventive measures…i.e. via a mosquito bite.
Ay, this is NUTS! It should not be so fricking easy to fit everyone into a diagnostic category of mental illness. Emotions are NOT illnesses by definition, they are normal and necessary, even excessive emotional reactions are quite normal; they happen every day to everyday normal people. Some cultures define themselves by their emotionality! It behooves us to remember this and not pathologize it.
So too, think of this: depression frequently is just sadness, folks. We used to know the truth of the saying, “This too will pass…” There are problems in living that are just problems in living, and I think that some people for whatever reason are simply miserable, without having a mental illness. They would not do better being labeled with an illness or being treated for one. In fact, I have seen people in states of abject misery do a great deal worse under the burden of a label…
I have had it. I do not trust a drug company or a prescription at all, none of them. The foxes are in charge of the chickens and they are up to no good, no good at all. So this weekend I am OFF all Abilify. HURRAY! After that I start cutting out the Geodon…(I have already halved the Ritalin simultaneously with the decrease of Abilify. I had to, I simply don’t need the Ritalin as much, as I am not as sleepy. After Geodon, there is only the Topamax, which I take for seizures and migraines.. Have to decide about that one. I want to be off it, I really do. But can i?
*Note that although some of these conclusions are my own, I drew most of the research I have based them on from my readings in Robert Whitaker’s fine books MAD IN AMERICA and ANATOMY OF AN EPIDEMIC. I highly recommend reading both of them, which can be accessed through the link I provide at the top of the page in my blogroll. The link goes directly to ANATOMY but MAD can be found easily through there. Good reading! And please do let me know what you think at any time.
I just was released from the Yale New Haven Psychiatric Hospital and i regret to say that it was far from the kind and gentle “soft place to land” in a crisis that i remembered. Partly this was my fault, for wanting to not take the meds that i already knew would be forced on me, quite despite Dr Milstein’s assurance to my outside psychiatrist that he would never force meds or Zyprexa on me as “it doesnt work.”
No, I did not know that meds would be FORCED on me…Not until Robert Ostroff MD took over my care and made it clear he did not give a damn how I felt. He decided to punish me with massive doses of Haldol when I refused Zyprexa, and I know he is of an age to understand what he was doing. One, he is a Yale Physician, so he knew of the hearings in Congress back in the 70s where the Russian dissidents were complaining of TORTURE by Haldol injection, and where Congress actually decreed that the drug was in fact an instrument of torture when use on Russian citizens…He KNEW what he was doing to me, PUNISHING me. He just had the power to do it and could. So he did. He NEVER saw me to talk to me, NOT once. No, he just oversaw torture, and while Robert Milstein, MD (basically a good guy, if deluded into believing that psych meds are good for people) was supposedly on vacation, he too was available and did nothing to stop this. For that I do not forgive him…Or, I forgive him, but will never trust him to treat me again. No, I will never go back there.
In fact, I’m here to say that no hospital psychiatrist can be trusted when they promise not to force you to take drugs…that is what they are paid to do and are largely paid to believe in. It did me little good to try NOT to sound like i was ranting and raving esp when attempting to persuade either doctor or social worker in hospital to read Robert Whitaker’s ANATOMY OF AN EPIDEMIC or even borrow my copy of his MAD IN AMERICA, both books i find life and mind changing in a major way, even a year after i started reading them for the first time.
I dunno what to do though, in terms of meds. I function fine in between times in hospital, mostly. And so are the Abilify and Geodon helping or simply not Not preventing a relapse when it comes? There is reason to think that Geodon may be damaging my heart, slowly but surely. My EKG said something Dr Milstein refused to explain about a “probable infarct” but was that me, my heart or some general info on the EKG sheet? I wasnt allowed to look at it long enough and NO ONE answered my questions about it. Probably fearing i would stop taking the offending medication, which was true and i did anyway so they ought to have talked to me honestly.
But honesty is not a general policy in brutal psychiatric units where they restrain you, holding you down and bruise you to give you injections of Stat meds that are really ordered only because someone with the power to order them got angry and resentful…
I cannot sugarcoat my own demeanor during this stay. I was not a pleasant patient to anyone most of the time. And at the worst times i was likely considered horrendous. I screamed daily at the top of my lungs, i resisted their treatments physically and violently, i defecated on the floor of my room and even put handsful of shit across the walls, and apparently i even threw a cup of coffee at someone…though i do not remember doing this and the report may have been distorted by second hand information about me, coming back to me. But i was a horrible patient and one aide even called me, every chance he got, a dog, a pig, a swine….in covert secret ways, audible and openly but when no one else was around to hear him except the other aide who would back up his story that it never happened.
On the other hand, there were a few kind and compassionate understanding people who did not throw my smearing shit in my face or even take my calling them horrible names (bestowed on my vocabulary by a former friend who called me them) personally.
I need to enlist just such people for private duty help for the next relapse, if it should happen…but how? Ads on hospital cafeteria walls? How to vet the sign-uppers, so i do not get attendants that will abuse me in my own home? How to trust, and when, what they or references tell me? So many references are positive and therefore lies that they are tantamount to useless unless secretly negative!
Decisions decisions….must be made well before anyone is needed to help me at home….one to one, constant observation-plus!
Well, i am still recuperating, and worried about deep hip pain though seemingly improving is scary, reminding me of the avascular necrosis bout i had about five years ago. Was it meds induced? possibly because it healed magically in a month post radiographic dx, with a stay in psych hospital and change in those meds. But if i dont withdraw abruptly from, say, topamax or geodon, but slowly, will the hip pain continue, or evolve into worse than just, say, pain, but real bone destruction ans disability? Can i take any risks at all at age 60 with drugs that have no proven track record research wise, and seem to help me but may only being doing harm?
So that is all I have to post today as I have too many errands to do before my meeting at the Institute of Living. Wish me luck everyone! I don’t expect much from them, I must say. Not much at all, after all, no one is going to acknowledge any wrong doing, much less apologize or even want to improve the situation. Not as at Natchaug where at least they gave lipservice, though it turned out to be lip service ONLY…to wanting to make Natchaug a better place. (Yeah, it turns out they — THe MFs at Natchaug Hospital who said they wanted me to speak — were just stringing me along, never did have any intentions of having me back to speak to the Medical staff, just mollifying and mollycoddling me as I sort of thought they were…Dr Deborah Weidner, the Natchaug Hospital CMO, is a politician as much as a psychiatrist and has to be, right? NO…but that is another subject altogether. I won’t be going back to Natchaug ever again either , not as a patient, as was understood. They don’t have a doctor who will see me, so why would I care about helping them improve? I did care. I do care about all their other patients and I care about their Mental Health Workers, who were the one group that really did do their jobs…and most of the nurses too…But the problem is the Admin of Natchaug doesn’t care, and the senior nursing staff is burned out and problematic…But I am not going to go there. Because THEY DON’T CARE that I care!)
Anyhow, as I said, I have errands to do and I guess I should maybe wash before I go to the IOL, seeing as how I haven’t done so since my trip to NC…It might be a good idea, though a real drag. I hate it…I hate the very idea of getting under the running water and getting wet is such a hassle. But gotta keep up the appearance for today! After that, who gives a damn…
Okay, so thats it for now. I’m outta here. Thanks for all the FB support, guys. I will let you know how it goes.
When I saw at the end of this film, part four, before the depressing note that stated all that Indian law might not permit Reshma to do in her life, how she was making a living by painting, all I could think was, WOW! Go for it! At the very least, she is not being held back by the strictures of disability law and Medicare and Medicaid earning limits, or being forced into a permanent sick role because of same, simply in order to have a roof over her head and food to eat. No, she was lucky enough to have a family that both really and truly took care of her in her worst moments and fought for her in the best sense of the word, and also one that let her go when she needed to fly free. Most of us are not so lucky…alas. I think the support that she got all through her illness played an enormous role in her recovery, frankly. And I dunno how many of us get that sort of community or family support, but I wager that it is not many. I certainly did not. I wish I had, but it was very much to the contrary. Instead of support, I was abandoned entirely, both financially and emotionally. Left high and dry, to such an extent that people who met my parents after the break, never knew I existed, not for thirty-five to forty years. Some are only just learning of my existence now, as they meet me when I visit my mother. They didn’t even know or understand that all along Lynnie had a twin!
But I do not wish to dwell on that, except to say that things did not have to be as they were. And we do not have to live as second class rejects in society, except insofar as we accept that role. And take it on, along with the disability status and payments that we are told we should apply for at the first psychotic break. I disagree. If a person has a work history (and history is the single best predictor of the future, if anything can predict it) and has shown that he or she can hold a job, then why after a psychotic break should they be told they will never work again and that they should apply for social security disability? Disability signifies Permanent and total disability, that’s what it is for. You are not supposed to get better, and it’s meant to be “for good.” No, it is not impossible to get off SSDI and you can in fact earn your way off it. But how many people do? Not a single person I know who ever obtained SSDI payments ever got off it or ever even tried to do so. The best they did was earn just below the legal limits of what one can earn before they start counting against your disabled status. Which is to say, they worked, yes, but only a little, and only to the extent that it never threatened their standing as a disabled person.
What a crappy system. Someone a few months back when I was in the hospital asked me why I was so angry at the System, and why I counseled anyone under 50 not to go for disability…and this is why. Because it paralyzes a person into doing nothing with his or her life, it keeps them mired in permanent poverty, and it encourages lethargy and breeds depression and recurrent illness. I believe it does NOBODY any good. Frankly. True enough, I cannot say that I am not grateful as hell that I have had a monthly income for all my adult life, as I have never been able to work an 8-hour day regular job. But if, instead, there had been creative rehab or job counseling and creating, maybe someone would have discovered my artistic abilities earlier in my life and got me going, and using them earlier in a more productive and income-earning capacity.
I was never, and never claimed to be, unable to do anything at all. I simply could not follow a routine of any kind or go into an office or workplace from 9-5pm. Since that made me unemployable in their lights, I was “disabled” and put on the SSI and SSDI rolls. But in truth, while it guaranteed me an income, it also sidelined me for life, because I didn’t have to do anything to survive or even to get ahead. And in fact I was not allowed to get ahead or I would have lost the very disabled status that I now needed simply to qualify for housing and food. It was a terrible catch 22 situation that only perpetuated itself once I was caught in it. I could never get out of it once I accepted the first check…
And it only got worse when I moved into the cushiness of subsidized housing. Now, not only can I not move (it is HUD housing not Section 8 so it isn’t even portable) but I am “used” to a piddling rent of 1/3 of my piddling income. I have stopped knowing how to scrimp and save and live on pennies a day…because I do not have to. Everything is guaranteed here. Everything is safe. But I am suffocating, because I have no life, and no prospects for any change or growth or movement because at age 60 my life is at an end…I will live and die in these measly 2 rooms, living on SSDI and SSI, earning nothing, doing art and storing it away for nothing and no one…What good is that?
That, my friend who wanted to know why disability is such a bad deal, is why I counsel anyone who is not close to retirement not to go the disability route, not unless you want to do nothing and live in poverty for the rest of your life, and are content with a life of watching TV and a strict budget, using food-stamps and coupons. Because it will come down to that, that is, if you have a TV. And lucky you if you have a car and can afford to keep it on the road….If not, think about whether or not you can get rides, because the bus can be a drag when it is raining or snowing and you have a lot of groceries to carry. You better keep the car in tip top shape in any event, because you won’t be buying another anytime soon on disability from Social Security…I dunno about you, but no one I know gets much more than $1000.00/month from SSDI and usually we get hundreds of dollars less than that. One car repair bill can rip a monthly check to shreds.
I dunno what most wage-earning people think a life on disability is like, but it isn’t a cushy life of luxury, not at all. I haven’t bought or been able to buy new clothes in nearly ten years. (I wouldn’t want to anyway, because I like to buy used clothing and not generate new carbon, but do you really think I could afford on my SSDI check the price of any clothing except Walmart’s, that abomination of a store?) I cannot even afford to get food at Stop and Shop, let alone new clothing anywhere. I buy literally everything used, at GOodwill, or I barter or get things free through Freecycle. Or I do without. The only new purchases I make are art supplies, when I cannot get them at tag sales, or through other outlets. And I do not replace my erstwhile beloved pet Eemie, because I know I cannot afford a cat. You make choices in this world. If you choose to go on disability, I believe they should tell you precisely what sort of life you are choosing. Or give you options so that disability is only one of several equally feasible ones. It ought not be simply: go back to work at the same job, at the same level of stress, or go on disability. That is stupid, especially if one has been psychotic. But it also ought not be, You have been psychotic, and we are certain it will recur, so you will never be able to work again. That is double nonsense. NO ONE can predict the future, or tell a single soul that a psychosis will or will not recur. Only time will tell, and predicting a good prognosis has been shown to pay off with better outcomes than telling a patient that the future looks dire.
Okay, enough for now. I hope I haven’t been too oldy and moldy-sounding. I’m just very discouraged about my own limited and stagnating life. I do not feel as old as the system is making me behave. I could have a good life for the next two decades or more and maybe even a career. After all, Grandma Moses didn’t start painting till she was much older than my mere 60 years, and she had a long painting life ahead of her. No one told her she should just hide her head in the sand and wait to die. Or if they did, she ignored them and went ahead and painted and painted. I won’t give up on art, but I am frustrated and feel utterly stymied by a system that has clipped and cauterized my wings.
Finally, this is the large Turtle that I owe Tim, as it looks at present. I am going at it very slowly but surely.
On Medscape yesterday they ran an article/video by a Dr Jeffrey Leiberman, lamenting the failure of three psychotropic drugs –one for the treatment of schizophrenia, and the others for Alzheimer’s — to pass beyond either phase 3 or phase 2 clinical trials. This is part of what Leiberman had to say (please note that the emphasis is decidedly mine…)
“The brain is an organ that is orders of magnitude more complex than any other organ in the body. The brain has 100 billion cells. Each of the areas of the brain is organized cytoarchitecturally differently, and the cells connect via over 30 trillion synapses. Compare this to the heart, the liver, the gastrointestinal system, or the lungs, and there is no comparison in terms of complexity and intricacy. In addition, given the fact that we are developing treatments for brain disorders that affect mental function and behavior, the animal models that are an essential component of biomedical research and drug development are limited, because how can lower species like rodents model the complexity of human behaviors and mental disorders that we are trying to correct pharmacologically?
“In addition, the biomarkers we use to signal the effect of the treatment or prove the target engagement of a molecule at the desired location in the brain or protein in the brain are still in development and not fully validated. Thus, the complexity of the brain and the limitations of existing tools make the prospects of certainty in drug development [for brain disorders] more questionable than in other organ systems and disease areas. “Certainly the research community and the National Institutes of Health (NIH) understand the importance of redoubling our efforts to develop treatments for this important group of disorders. The NIH has recently established a new Institute, NCATS, or National Center for Advancing Translational Science, which has as part of its core mission drug discovery and development. In addition, various other Institutes have put out RFAs [request for applications]; this includes the National Institute of Mental Health, which has initiated a series of what are called the “fast programs” to identify drugs that exist within the pharmaceutical industry and may no longer be under development, but can be repurposed for study for specific disorders. A quick, rigorous study using a fast-fail strategy can determine whether these agents have the potential for further development.
“New efforts are coming from the biomedical research community as well as the NIH to spur drug development. I hope this will act as a catalyst for the pharmaceutical and biotech industries to not despair or back away from the risk of developing drugs in these areas, but rather to find the resources to support drug-development programs for these disorders.
“What is the benefit? Anyone who works with psychiatric patients knows that there are tremendous unmet clinical needs, whether in schizophrenia, depression, bipolar disorder, autism, or Alzheimer disease. With these needs come tremendous market potential, so for those who stay the course and persevere, there will be very lucrative rewards .To me, this seems like a great opportunity, and I think our partners in the private sector should appreciate this. I look forward to partnering with them to try and work in a way that uses their precious resources most efficiently but still serves our scientific goals and the needs of our patients. Thank you for listening.”
Yes, I noted the last statement, that he wants to serve science and his patients, but i could not help but feel great dismay at the other statements, including the first, that largely states what I already suspected: using animals to prove anything about human brain disorders or states of mind is downright ridiculous. All you can say about a rat’s “schizophrenia” is that it appears to “behave” in some fashion that looks similar to someone who is psychotic…but how would you know if a rat is psychotic, or hallucinating or thinking in a delusional fashion?
Come on? How would you know if a rat had negative symptoms of schizophrenia, or was depressed, or simply felt lethargic because it was hungry or drugged or sleepy or some other physiological reason. Well, you likely could not! Using animals that can not communicate with us to model human mental functioning is downright silly, and yet it seems to have only just occurred to Dr Leiberman, perhaps in his own disappointment with the glutamate-dampening anti-schizophrenia drug that just went bust…I dunno.
Once again, having read about how they are using Ketamine to treat 6-12 years olds with bipolar illness (mind you, I am not convinced that the children are actually Bipolar, only that more and more kids are being diagnosed because conveniently shrinks are allowed to drug them with Abilify and Seroquel and other adult antipsychotics and the drug companies push it on them, pay them for using it etc)
I believe that the use of psychoactive drugs and the rampant use of them is more often inappropriate than not. Truly. The very idea that Abilify and Seroquel are prescribed willy nilly for everything from insomnia to mild anxiety is just plain SCARY. Has anyone out there taking these drugs even bothered to read the side effects, or do they no longer care what they are taking? Obesity no longer scares anyone, but what about diabetes and high blood pressure, nope, I guess not, since those are epidemic too.
It truly astounds me how both those drugs, not to mention a whole host of other powerful drugs are being pushed on the American public, but we are a public that LOVES to take drugs rather than deal with problems by, well, looking at ourselves and thinking about what our responsibilites are and how we might change things…and doing some hard work and hard thinking about things…No, god forbid, why not just take a pill and forget about everything else, and if the pill doesn’t do anything, well, then, probably we are incurably ill and need to take those useless pills for the rest of our lives, because if we didn’t take them we might might might be even worse than we are taking them, right?
Not! Why do we take drugs that don’t help us, or that we do not notice any benefit from (though the shrinks are always willing to point out to us how much better “you are feeling”), drugs that might even make us feel worse in other ways.
Some people who are depressed lose all sexual enjoyment and functioning from their antidepressants, but refuse to stop the drugs because they are afraid…even though the drugs themselves make little difference in their mood, but their lack of sexual pleasure and responsiveness surely has…in a negative way. Why do they continue taking the pills? Hope? Obedience? Uncertainty? Perhaps all three…They may hope that if they take the antidepressant just a little longer, the side effects will “go away” as their doctor likely assured them, and they naturally want to be an aobedient and good patient, so they keep complying. And of course, depressed as they still are, uncertainty about the future plays a huge role, since how do they know that things wouldn’t get even worse, should they cease taking these pills that the doctor says not only will help them but somehow noticeably is helping them, whether they feel it or not.
Argh. I am reading a book, Rethinking Madness, by Paris Williams, PhD. and it is a very interesting take on psychosis and the treatment of it. He suggests that it is NOT always a lifelong condition, or that one breakdown means that one needs to be on medication for life, or in fact that even with repeated psychotic episodes, one can be on intermittent medication and at low doses. I have difficulty reading, myself, so I have not read far along, but the first case study discussed a man who became psychotic suddenly in the late 60s or early 70s when he was threatened with the draft. After that he was ill for a long period of time, in and out of madness until he met the “right doctor” at age 28 or so. I believe it was then that he made the slow transition off all medication and since he was 35 or so has been off meds altogether. And has been well. Recovered, in every sense that matters, completely.
Everything about his history would today dictate that he never be taken off meds, and would mitigate against his ever dreaming of working in the mental health system, let alone as a worker in a state hospital. Yet this is where he has been employed for many years…(I may misremember some details, but that is the gist of it.) I could scarcely wrap my mind around such an outcome…it seemed that amazing.
Yet, I cannot be envious, because I know how often I tried to get off my medications, and because I did not know how, I likely induced a recrudescence of psychosis without even understanding that was what was happening. And naturally, they put me back on the drugs again…It was not my fault, just how it was in those days. I didn’t know, and they still don’t! Even now, though, I do not know if I could get off the meds.
But in my case, I am not sure I want to, largely because I function so well on them. I write, I do art, I sleep well, I am not obese, I have no chronic physical health problems because of them…So I have no pressing need to get off the antipsychotics, nor the anti-seizure meds, which I may need due to temporal lobe epilepsy anyhow. I would like to get off the sertraline, yes, and we are working on that. But why fix what ain’t broke at this particular time? I mean, I only got out of the danged hospital a month ago, and it would seem a little, er, crazy to fiddle with things this soon, much as I wish I could. On the other hand, I don’t mind taking these meds, because by and large, I believe, frankly, that my body has re-established some kind of homeostasis and has adapted to the lowered dopamine…so it has ramped up production to a different balance, meaning that I am fine where I am, but would risk a massive overload should I stop cold turkey.
OTOH, I do not yet understand the absolutely immediate improvement in all my mental capabilities when I take Zyprexa. Yes, I eat and eat and eat. But I can read and pay attention to people telling me things to movies and the TV and just “intake” in a way that I cannot now and have not in years…And it is literally within 2 doses. That cannot be a matter of homeostasis so what is it? Can Zyprexa be the ONLY drug that actually has some beneficial effects? I doubt it. So what is it? Anyhow, any comments on these points would be appreciated. I don’t mind if you want to argue to the contrary, if you feel it strongly. I am here to hear different points of view as well. Though you know of course that I may “argue” with you back! All in friendship and good cheer.
It has been a week since my discharge from the Adult Unit at Natchaug Hospital. After a week of recuperation and stabilization at home I feel compelled to write you via the open forum of a letter on this blog. It may or may not get your attention directly but I feel certain it will be read by someone on the Natchaug staff. Perhaps that way it will eventually reach your eyes. If not, so be it.
Our encounter on Monday the 27th of August was extremely brief and not particularly noteworthy. While I have much to say that never got said then, I owe you nothing, and by the same token, expect nothing from you either. That said, to any of my readers who want to understand the intent: I write partly in my defense against what I feel were gross misunderstandings (leading to unnecessary trauma), and partly to record publicly – on record as it were – what really happened over the last 4-6 weeks.
Please, Dr Weidner, or any other reader: Do not dismiss this letter out of hand as the peevish complaints of a disgruntled but troublesome patient. I understand how you might be tempted to do so, especially because you — or at least Dr Pentz and Lisa H. APRN – claimed in their infinite wisdom to be able to detect signs of an Axis II Borderline Personality disorder (despite the concomitant presence of an Axis I psychosis ). I know that labelling me “borderline” was always just another way to dismiss me and my concerns as “mere,” that is to say as meaningless or manipulative, the “mere” attention-seeking of a manipulative PITA*.
Nevertheless, it ought to have been obvious, it ought to have been needless to say — but clearly was not — that no one could possibly know what my baseline personality was like from the past four weeks at Natchaug nor in fact from any of my past four stays there. What was clear to many early on, including me, was that this hospital stay at Natchaug abounded not in norms but in extremes, from start to finish, extremes I might add both on my part and on the part of hospital staff as well.
My friends and family know that I am not generally someone who has screaming fits or throws things or strips naked and parades around in public, all modesty thrown to the wind. So too, Natchaug staff: So far as I knew or had seen since 2010, they rarely became physical with patients and not once in all the times I had been there had physical contact devolved into anything even resembling a fight or violence. Instead, kindness, compassion and empathy were the primary tools. The best staff were as slow to lose their tempers or act on negative emotions as a live gecko was to do a cancan under the noonday desert sun.
I knew those things, and until August I believed it automatically made Natchaug a superior place, a sanctuary immune to the sorts of failings I’d found in so many other hospitals. That was why I insisted on coming back to Natchaug this time even though it meant waiting two and a half days at Windham Hospital Emergency Room, never moving off the gurney in the barren cubicle I was placed in, monitored by a camera not so subtly hidden in the large TV screen. I knew of no other hospital where I could be safe, both from myself under the influence of command hallucinations, and just as important, from any staff impulses towards the use of violence to achieve control or discipline.
How could I have known that from the first morning after I arrived, staff behavior was to be stunningly “un-Natchaug-like,” as erratic and extreme as my own would turn out to be. My entire stay was in fact characterized by physical assaults by staff, punishment and trauma that began the moment I woke up that first morning. I responded poorly to this, as anyone might, by regressing into more and more primitive behaviors. But how did “you,” that is to say, the Natchaug staff, respond to me? Not by taking a step back and seeing how things could change for the better. No, instead, you, they decided to blame the victim, to say, “She’s misbehaving, she’s ‘doing these things on purpose,’ she is volatile, unpleasant and emotionally unstable…” Et Voila! There I was, diagnosed, improperly but officially with “Borderline Personality Disorder!”
As many of my readers know, I have written extensively here, at wordpress.com, Wagblog, about psychiatric units and hospitals and have until now always held Natchaug in the highest esteem. Natchaug was always the gold standard, the touchstone against which all other Connecticut hospitals were measured. I believed that Natchaug had the right ideas, the right philosophy about patient care, hired the right people and trained them properly. I trusted that the hospital understood the critical importance of trauma-informed treatment. Ever since my 1st hospitalization at Natchaug in December 2010 -January 2011, when Sharon Hinton was director of nursing, I felt I’d found a truly safe place, an asylum in the best sense of the word, where troubled patients would never be brutalized by staff more bent on coercion and a lust for power than compassionate care.
I have been hospitalized at Natchaug four times now. The first three times bore out these high expectations, but this last time was unmitigated disaster, revealing how much things have changed, and how, under the auspices of the wrong leaders even Natchaug has been willing to permit a few “bad eggs” to damage patients with impunity, rather than take an honest look at burned out employees – including those at the highest levels, RNs and psychiatrists included –keeping them tenured out of a misplaced loyalty, refusing either to re-educate them or to remove them from direct patient contact.
There were three separate instances of physical violence to which I was subjected between July 31 and August 27th . The very first morning after I had been admitted and placed on one to one for safety, I remember I sleepily turned over in bed and scrunched down again to catch a little more sleep when the person sitting with me suddenly insisted that I place my hands outside the covers where she could see them. This was a strange request, since they had been under the covers all night, right up until that second. Dumbfounded, and freezing cold, I resisted and ignored her, fairly certain that she would not make a federal case of the request once I fell asleep. Instead, she repeated herself, louder and louder. She actually approached the bed and tried to bully me verbally into putting my hands above the bedclothes, telling me that being on constant observation required that my hands be visible at all times. This was news to me. Never in my experience at Natchaug had anyone required such a thing. I continued to resist, though any impulse to sleep had left me by then. By this point, it was strictly on principle.
Well, she was intent on winning the battle and instead of negotiating a solution called in reinforcements in the persons of two male mental health workers. Unable to verbally force me to uncover myself, they initiated physical contact, attempting to pry my blanketed fingers away from the blanket in which I had wrapped myself. The female stood aside, but continued to threaten to deprive me of all coverings if I did not comply with her order. The tussle went on. I vehemently kicked at them whenever they laid hands on me, though I spoke not a word the entire time. At last, they gave in and left me alone. I never found out why. Perhaps they saw the brutality they were inflicting on me. Or perhaps they were called off. I do not know. All I know is that that particular rule was never again inflicted on me.
After they left, and a new sitter arrived, I lay in bed, breathing hard and feeling bitterly betrayed. What the F just happened? Dismayed and disappointed, I could scarcely believe I was really at Natchaug and not at the torture chamber in the south eastern part of the state again. The consequences of this betrayal left me physically and psychologically speechless. What had happened to “my” Natchaug? Try though I might to let myself talk, I remained mute for 8 days.
I won’t go into the long and involved story of the second assault, except to say that it involved poor judgment on the part of my social worker and evening nurse. OTOH, an assertion of power by another nurse assigned to me nearly twenty four hours later was overkill and an act of punishment and revenge. She can deny it left, right and silly, and maybe her RN superiors believe it, especially because they have a stake in it. But I know contempt and the smile of sweet revenge when I see it, and I knew the enjoyment in her smile that Wednesday. Assault #2, which involved a rather violent physical altercation and restraint, nevertheless had a bearing on assault #3. What follows is the story of that third assault on my person. In places I quote almost verbatim from my journal entries, which I wrote at the time. When I am not quoting, I assure you that the account is very similar to the journal’s “horse’s mouth” and merely states the same things I wrote there, but with better words and fewer punctuation marks.
I do not remember how it started. I suspect I had been screaming or yelling about something. All I know is that the RN Supervisor for the afternoon, a woman I will called Dee came into my room after my upset and just stood there. At one point in her obdurate silence, she accused me of an unprovoked attack on it the nurse, Kay, who had taken revenge on me the day before. She called Kay one of her “ best nurses.” Incensed at this I assured her she didn’t know the whole situation. When she said she knew enough, I told her to leave my room.
“I’m staying right here,” she said giving me a baleful look. I pointed out that I already had a 1: 1 and did not need a 2nd person in the room. She only continued glaring at me.
“Get out,” I screamed, “get out of here!”
No response. No reaction, except for a slight recoil from the loudness of my voice.
I threatened her then. I admit it and I am not proud of it. I threatened her. I took up a box of crayons and looked as if to hit her. Everyone cried out, “No, no, Pam!” And I put it down. But I continued to cry out, “Leave! Leave! Leave me alone!” She only stood her ground and stared.
That’s when I lost it. I picked up a chair and threatened to throw it at her. This is what she’d been waiting for. She could’ve laughed or made a calming gesture or simply backed away and let the mental health workers gently disarm me and all would’ve been well. But no, Dee liked to escalate rather than de-escalate, so she yelled out, “Escort her to the quiet room!” Before I could offer to walk there myself, Brad and someone else picked me up by the armpits not even allowing me to walk and dragged me. Because they didn’t even ask me if I would walk freely, under my own steam, I fought them, twining my legs around theirs as if to try and trip them. Then to add insult to injury they dragged the blue therapy chair out of the room instead of leaving it there for me to rock in and calm myself. Now, inside the tiny, now empty windowless cell, despite the bright mural painted on the walls, panic rose in me. I looked around, remembering how Sharon had assured me that no one would ever leave me alone in there unless I wanted them too. I begged Dee for someone to stay in there with me. Sarah the mental health worker saw the panic and offered to, but Dee was furious and ordered her out.
“No, she is to stay in here alone!” She made everyone leave, and following them out, she slammed the door shut behind her.
I was horrified. All the memories of locked seclusion returned to me in an avalanche of terror. In my mind, memory told me it would make no difference if I went to the door to beg to be let out, or for a blanket or someone to talk to. Experience, all my long experience had taught me: there was to be no mercy no help nothing would change no one would respond no help nothing no matter what I did. I was and would be abandoned to my punishment until–well–until I had no idea how long it would last. No one told me a thing. Utterly terrified, instead of banging on the door and begging for release, I backed into the farthest corner. I wanted to meld with the wall, shrink back into the wall board as far away from the room as I could get. A howl climbed my throat. I tried to hold it back but I could not. When I screamed, I screamed not to anyone or for anyone but out of sheer mortal terror, the sort of terror that any animal must feels when its leg is smashed in a trap and knows his life is coming to an end. Screaming brought no relief though. Screaming brought nothing, it certainly brought no one into the room to help me. There was only thing I could think of that would that bring relief and that was to relieve myself. So I did, in the only way I could: I stripped off all my clothing and peed a huge puddle of urine on the floor. I had to. I do not know why. Removing my underwear I found inside the crotch a forbidden pencil. I’d not been allowed writing utensils for eight long days and just that afternoon I had used this pencil to sketch my first portrait since I’d been there. I wrapped the pencil in my clothing, knowing that if someone saw it they would confiscate it again.
Too late. A commotion behind the door and they were upon me, all of them, wrestling my naked body to the floor and prying the wad of clothing from me, smashing my glasses in the process so that one lens came out of the frame. In the melee, someone grabbed my medical bracelet right off my flailing wrist. They pinned me down. I knew what they had in mind. IM meds. But no one had offered me oral medication. “I want oral meds. I’ll take oral meds you can’t inject me, you haven’t even offered me oral meds.” I asked for Zyprexa. Not Haldol or Ativan but Zyprexa, the PRN I had on order.
They refused to get Dr. T, who signed off on the seclusion without ever seeing me, to change the emergency meds — which I didn’t really need but which were going to be ordered anyway, as a mater of course — to Zyprexa despite my psychiatric advance directive distinctly requesting no benzodiazepines of any sort. However, fearing any further confrontation, I swallowed the pills. Everyone got up and left except for the nurse supervisor. I stood up and surveyed the room. Urine ran everywhere.
“How can I stay here?” I asked her. “There’s pee all over the place.”
She surveyed the wet pads and floor. “Deal with it,” she said, and walked out, locking the door behind her again.
I was spent. There was nothing left in me to fight or scream or object. I simply lay down on the mat, amid the puddles of urine and curled up in a fetal position. Sleep never came; it was too cold for that. I just lay there, eyes open, my naked back to the window. 10 minutes passed. 15 minutes. I heard the mental health worker at the window ask the supervisor if she could let me out. “She is lying there calmly, I think she’s sleeping.”
“Give her another 10 minutes,” was the reply.
Another ten minutes went by and another.
The mental health worker kept asking if she could let me out. Finally, about an hour later, the door opened and Sara entered. I didn’t bother to turn over or look at her. I scarcely raised my head.
In a dull voice, I answered the requisite questionnaire, as if that were adequate debriefing. Then two other staff members attempted to clothe me in hospital issue johnnies, one over my front, one to cover the back. I allowed them to do this but as soon as they let me go and I was free to proceed out of the erstwhile “Comfort,” now Terror Room, I ripped off the johnnie coat covering my naked backside, and walked half-exposed to my room, deliberate and uncaring. Who gave a fork? What could they do to me now? What could anyone do to me? Fork everyone! They were dead to me. I was dead to them. It was over. It was over. I was dead meat. Just meat. I didn’t give a fork about anything.
More than any other incident, this one was the last straw. Whatever repercussions I deserved for threatening the RN supervisor that evening, however evil I felt for being the devil, there remained in me enough human pride to resist such treatment, enough to say that even I did not deserve to be treated as harshly as Dee had treated me. Not only did she deliberately test me, she lost her temper and I was her victim. I have reason to believe that most of the staff members who witnessed what happened that night believed she went too far. Some would actually say so in as many words to me, though others were cagey and feared repercussions should it get back to her.
All I knew was that I’d been treated like an animal. What did that supervisor or anyone else expect in response? Did she really think I would become docile and obedient, chastened, a meek and compliant patient? Violence begets violence. It always does. From then on I was not the same. I was not better either, no. I grew markedly worse, and worst of all, no one could predict anything about my behavior. No one knew what would happen next, what I would do, when I would lash out or scream or throw things or push someone or even hurt myself…None of those behaviors were “me” or even close to my usual, or baseline, but I reiterate: what do you expect: treat a person like an animal, and you can pretty much count on getting animal behavior as a result.
Dr. Weidner you do not know me. Paul Pentz, for all his discharge summaries and “progress” notes (the pages of writing are all boilerplate, meaningless, and/or second or third hand information for the most part), he doesn’t know a damned thing about me. I tried to let Lisa H, APRN, know a little, but by the time she was involved in my treatment, you were all so intent on seeing in me this mythical borderline personality, instead of a person who had been acutely and brutally traumatized at your hospital, that it was useless for me to expect anything. For all Lisa’s pretence of understanding, she had made up her mind about me before she met me. She was largely deaf and blind to everything I said that did not fit the tidy diagnostic picture: schizo-affective, with a concomitant borderline personality disorder. How convenient that you could chalk all the unit troubles up to my problem, rather than seeing it as something your hospital staff created! Blame the victim, why’ncha, instead of taking responsibility for a number of incredibly poor judgment calls on your own or your staff’s part?
Of course as many people have asked me, why do I care what you or Paul Pentz or Lisa Harrison think? Well, I do not, in fact, give a flying femptogram… Mostly I care about the decent people there — the mental health workers and the nurses who did like me and made it obvious and treated me very well and made it clear they would welcome me back (though I can never return, not now.) About Pentz and Harrison and the others I could give a ratzass. But I do, or did care about Natchaug itself, once the gold standard, for me at any rate. It was the one place where I could tell other people, “Go to Natchaug – I know people will take care of you there, people will care about you there, that’s where people will treat you well.”
The even bigger tragedy is that if no one is safe from the hospital staff at Natchaug, then the likelihood is that no one is safe in any psychiatric unit or hospital in Connecticut. Let’s face it. Not much progress, perhaps none at all, has been made since the Hartford Courant’s series of articles in 1998 called “Deadly Restraints.” My sense is, in fact, that since Mnanaged Care took over medicine, things are actually a great deal worse…Oh, sure, I was not four-pointed during the past stay at Natchaug, no they managed not to become that brutal, so far… but I was physically restrained and manhandled during all three incidents and I have been four-pointed at nearly every other hospital in the state up till 2010. So I would hardly say that that practice has gone by the wayside. In fact, in the Hartford Hospital Emergency Room back in July of this year, they threatened to four-point me just for making a nuisance of myself and being noisy…
So much for not using restraints. As for not using them as punishment? I believe that in every single case when I was subjected to four-point restraints from 1980-2010, they were used as punishment, as a convenience or in revenge… I state this categorically: that not in a single instance were four-point restraints ever truly necessary to keep me safe. They were only used because they were available and the culture on the unit permitted the employment of torture to control and discipline patients. Period.
Seclusion? This practice has only increased in usage so far as I can see. The difference is only that staffs are careful to call such barren quarters the Time-out Room, and are rarely apprised as to the legal definition of either seclusion or restraint. (BTW Time-out is a disciplinary measure used to train children to behave properly…since when did psychiatry decide that patients in adult units ought to be treated like misbehaving children and sent to time-out rooms? If you want to talk about empowering patients and not infantilizing them, you do not in the next sentence tell someone to go to the “time-out room” and stay “until I say you can leave.”).
What you, Dr Weidner et al, think about me in the end is of little consequence. I know I do not have BPD and so do the people around me that matter to me. If I care about anything having to do with Natchaug it is not your opinion of me nor your judgment or your diagnosis, I care about Natchaug because while it could and should be, it is no longer a place I trust, a place where I can direct other people for safety and compassionate treatment. Because if I am not safe from myself at Natchaug, if I am not safe from the staff at Natchaug, and I mean by staff, the doctors and nurse supervisors as well as any “rogue” RN or MHW, then no one is safe at Natchaug and no one with mental illness is safe in any psychiatric hospital or unit in Connecticut.
That, Dr Weidner, is by far the worst tragedy of all .
*PITA = Pain In The Ass
I was admitted last Tuesday night, the 17th of July I believe it was, to the Institute of Living, the psychiatric division of Hartford Hospital in central Connecticut. I do not remember this. The fact that I have amnesia for it and for most of the Wednesday following only occurred to me on Thursday, a day and a half later, when I wondered — the train of thought must have had to do with the seclusion episode that took place Wednesday evening and which I described in yesterday’s blog post — why they had been so violent with me, why they had so quickly secluded and threatened me with restraints in a situation that didn’t come within miles of “requiring” them. Surely, I thought, the staff member who admitted me, whoever that had been, had asked me a critical question, which is on every admissions questionnaire upon entering a psych unit or hospital these days: have you ever experienced trauma or sexual assault? (or words to that effect). I could not, and still cannot, for the life of my body or soul remember anything asked or answered at that time. There’s little left in my memory beyond a vague “snapshot” of being wheeled into The Institute of Living (hence forward to be called by its nickname The Toot or by its initials, The IOL) and my understanding that I had been transferred out of the ER. Then the memory goes blank until many hours later. Understanding only as late as Thursday that I had this gap, and pained by the violence dealt me the night before, I went up to my “contact person” and asked about my admission. Could I find out whether this question was ever asked me, and what my answers were? At first, naturally and as a matter of course, she refused. That was SOP. Refuse, refuse, and refuse. So as I stood there, earnest in my request, she seemed about to summarily dismiss it as just another bothersome demand from a too-demanding patient already much disliked by all. What did I expect, cooperation? But to my surprise, her misgivings and the flicker of irritation that had crossed her face at first changed to a flattened look of resignation. She agreed to read my answers to the questions to me. But that was all she would do, so don’t go expecting more than that.
As she read from the top, a few memories stirred and woke, but only temporarily. I fear they soon faded again into the all-white-out of oblivion. Only the trauma memories remain, for they apparently are stronger than thieving Ativan. Can I push myself to remember what her reading my answers back to me recalled to mind? She told me…what? She said that I told the admitting staff member, whom I do not remember a thing about, do not even recall if that person was male or female, doctor or nurse or what…I told that person I was not homicidal, not suicidal, not hearing voices, and that I didn’t need to be in the hospital. Three answers were true, or true enough by then. After having been nearly killed in the ER the people in my head/outside of it, who tell me to do things to myself were not so relentlessly horrible in their demands…so I was indeed no longer suicidal, homicidal or in need of hospitalization. I just wanted to get out of there and go on my upcoming writing-retreat vacation.
As I recall the little I recall now, this nurse, my “contact person” read to herself a lot of the paperwork and relatively little aloud, despite her promises. I kept asking what she had read, and prompting her to read out loud, but she let forth only a few phrases. I still do not know why… though I can guess that pretty bad things are written there about me. That would not surprise me one iota. I do not really care. They will largely be lies or descriptions of that awful scene in the ER from one very biassed point of view. No one will tell MY side of the story, that’s for damn sure. Whatever is said there will be based on what the ER personnel and the guard-thugs did to me, but if my contact person believed them reading them, and never bothered to find out the half of it, then who knows what they all thought about me, or believed…Anyhow, I do not care, because they too were thuggish, professionally and psychologically.
But the big question was yet unanswered. Had I ever in fact been asked about past experience of trauma or sexual assault? Contact Person, whom I won’t name as she was at least marginally decent to me, now seemed interested in this too, having paged through the lengthy document and not found it. She seemed puzzled, said she knew it was a standard question. She started perusing the thing again from the beginning. A minute or two later, she poked a page.
“Ah, here it is. And your answer is blank.”
“So the person just skipped over it. They just skipped it!”
“It appears so. Do you want to answer it now?” She took out her pen.
“Yes, and yes. I have experienced sexual assault three times. And severe trauma due to seclusion and restraints in many hospitals.” I looked at her. She was writing. “Tell me what you wrote.
“Experienced sexual assault. Has issues with seclusion and restraint.”
“NO! I said, it was severe trauma. I have PTSD, ask my doctor. Ask, I dunno, give me a test. I cry just talking about it. My heart rate goes up just thinking about it, even though it happened more than two years ago. It was trauma, and you cannot do it to me again!” She wrote something on the paper but didn’t read it to me. She just clicked her pen off and stood.
“Now you have your answer. I have things to do. Let’s go.” With that, and no discussion of what had taken place on Wednesday night, let alone in the ER, she hurried me out of the side office so she could go back to the nursing station to do some “real work.”
I suppose there must have been some incidents of relative kindness at the Toot. There must have been exceptions to the Hartford Hospital IOL “coal dust standard.” But only Albert, a tech, stands out. Because they injected me with too much Ativan on Wednesday pm and I was discharged Friday noon, I had very little time between the ER’s monster dose and D3South’s equally large dose of Ativan-it-Away to retain much of anything but what stood out enough to stick, and really stick tight. Their puny kindnesses mostly did not, except for Albert.
On the other hand, the sheer meanness of the staff was astounding. I had a semi-meaningful interaction — though unpleasant – in all that time with only one individual who was not programmed to speak with me. And even that started out with nastiness, though I admit it was sparked by something that was “my fault,” as you will see.
Friday morning I needed migraine meds and my 8am pills. I went to desk at 7:55 and asked for them. A nurse or tech or someone –I never knew and no one ever bothered to tell me who or what they were — lingering at the desk said that the med nurse somewhere in the back would get them. I wandered off, figuring it would take some time and she would bring them to me, which is what they did at every single place I have ever been. But no, by the time I thought about it again, realizing that she had never brought them, it was 8:45 and people were lined up for their 9:00am meds already. I signaled above them to the nurse at the med window that I had not gotten mine for 8:00am yet. She told me that of course not: I left the med station; why should she go after me? Then she indicated that I should get in line to be next…even though that meant stepping in front of someone else. Okay, so I got in line, and – oh, I do not remember all that happened except that I became angrier and angrier with her, resenting her attitude. As a consequence, I did everything I could do to irritate her. She poured the meds at the computer, where I couldn’t see them, saying their names softly to herself so I asked to see the packaging. I didn’t trust her not to withhold or add something I didn’t want. Because I had asked for Imitex an hour before I sensed she would not include it. Well, lo and behold: No Imitrex! So I took the pills, but asked her for the Imitrex as well.
Ah, revenge time! “I will get the Imitrex at 9:00 am sharp, when it is due. That is 10 minutes from now. You can come back and wait in line then.” I just stood there, not budging. I would never stoop so low as to impugn a person’s person, but I probably let loose a few curses and most certainly raised my already angry voice a few decibels. Finally, speaking in a calm, respectful voice, a man whose name I learned was Albert came up to me asking in such a polite manner that I even looked him in the eye, to “please just lower your voice” so he could hear me tell him what the problem was.” Well, treated in such a fashion I understood he would wait for me to calm and not get angry back so I was able to take a few breaths and then make him understand what she was doing…He said, with the med nurse standing well within earshot, though I do not think he intended any manipulation, “It’s okay, don’t worry. It’s nearly nine, and I’m sure the med nurse will get your medication for you.” (I was sure of quite the opposite but harrumph! Well, what could that SOB, excuse me, DOS — daughter of a stud (med-nurse) do but give me the Imitrex now?) I might have crowed, but instead, thanks to Albert and in respect for him, I took it without a fuss and thanked him again.
This sort of treatment gives the lie to what so many providers – both individuals and insitutions — say about the goal of “empowering patients.” What bloviated BS! What they really want are not empowered patients but cowering patients, people too scared and drugged up to object or make trouble in the first place and then who continue to cower before the establishment MD’s power structures all the way to the last place.
My butt hurts from sitting slouched on a bed all day. I need a break. So I am going to post this and go outside in the cooling darkness of the Litchfield hills and drink the air. Since I have nothing I have to do here but write, I will post tomorrow about that single meaningful encounter I had while imprisoned at The Institute of Living. If I still feel it is worth writing about, which as I think about it, it may not be.
Oh, what the heck: Basically, it concerned an encounter with this female tech, a woman who in passing me in the hallway, the first time she had spoken to me so far as I knew, accused me of moral turpitude (not in those words), made a statement shaming me for my behavior on Friday morning at the medication window. What had I done? By talking too loudly, I had made “the poor man behind [me]” cover his ears and point at his skull to communicate his displeasure. PLUS, I had made everyone wait a good 30 minutes…I knew the 30 minutes was an exaggeration, so I didn’t even touch that, but the shaming tactic got to me. I went back a few minutes later and said I wanted to speak with her. We went to a couple of lounge chairs in the hall and sat down.
“What precisely did I do that was morally wrong this morning?”
“Do you know you talked so loudly this morning that the poor little man behind you was covering his ears and pointing at his head?”
“So I should have talked more softly, but I do not have eyes in the back of my head to see him. I could not know he was communicating by pointing at his head. It is not morally wrong not to have eyes in the back of your head, nor is it morally wrong to speak in a loud voice.”
She reiterated the case of “the poor little man behind you pointing at his head.” But I continued to press her on what was morally wrong because I didn’t have eyes to see behind me. Finally she granted that I could not help not seeing him and that it wasn’t actually a morally wrong thing to do, to yell or talk too loudly. At this point I said to her, nearly in tears because just having a calm conversation had taken such effort on my part, “Be careful what you say to someone on this unit you know nothing about. Words have power and you should use that power with care. You have NO idea how those words you spoke affected me, no possible idea…”
She gave me an intent look, almost a fearful one, as if afraid that — well, no, I don’t think she gave a damn whether or not she caused me any emotional harm. She no doubt despised me along with the rest of the nursing staff. But perhaps she suddenly appreciated how even her words were important and powerful, and carried weight and could do some good but could also do just as much psychological damage and maybe more sometimes than the loud voice that damaged mostly ear drums.
This is an extremely interesting article. Not for everyone, perhaps, but well worth reading.
But still worth reading.
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