And now for something really different. Cartoons that tell you about my life these days.
Hope you can make out the text okay…It is a little difficult,. granted. But I tried to photograph the pages clearly as possible.
Gargantua is the name of a book, and a character in the book. In it someone says, Appetite comes with eating. It helps me to think about that when I find i cannot find a way to put food enough in my mouth to keep going…I need to eat on schedule if only to keep my strength up.
Meanwhile I am not in a good state at all. Bill wanted to talk about an email I sent him saying as much as the above, but I am much too shaky to be able to deal with it. I just cannot use him to talk TO alone…I have friends with whom we have shared equally all along, and so I do not feel a burden now when I am in trouble. But Bill has ceased talking about himself a long while ago, and I am to blame for letting him withdraw. I felt slighted but felt that perhaps he was reserved and saved his intimate moments for his girlfriend…But no more. I cannot be using HIM as a pair of ears and feel that he shares nothing back. THen I feel guilty and a selfish user! That isn’t fair to me let alone to him…It won’t happen. It won’t be. Not any longer. Hear that, Bill? YOU are an important part of our friendship, as a person,. and if you don’t want to be a person, I do not want a NON-person as a friend.
Enough. I feel like I am going to die. And now even the doc doesn’t want to suggest that I take even a sliver of Abilify now that I am off it…So I am really up a creek..Up a creek because I dunno how long I can tolerate this. I smell rot rising inside me, smell it for real., Like my body is rotting from within…Where is it coming from? I brush my teeth several times a day (unusual for me!) but still the rot smell persists!
I am not a praying person, but I know many of you are. I am in such deep shit. I will be going to art therapy today, perhaps that will bring some relief. in the meantime, if you feel prayer can help, pray for me…?
Thank you , all of you, for hanging in with me. I am NOT a quitter, I am not a quitter!
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
behavior and cognition
inhibition of prolactin production
Why on earth would anyone deprive another human being of the one neurotransmitter that allows us to feel good about things? It would seem to be a diabolical plot, if anyone actually did such a thing, right? And yet, for decades right on through today, that is what doctors want us to do, block the transmission of dopamine to the brains of those of us diagnosed with schizophrenia. They know, of course, that it is impossible, that the brain up-regulates the flow of dopamine in such a way as to thwart at least in part the antipsychotic receptor blockade. Homeostasis will be re-established eventually, even if at abnormal levels due to the drug’s presence.*
No one can live without dopamine, after all. But to understand the necessity of dopamine, and that they have known for years that an imbalance of dopamine metabolism is NOT implicated in schizophrenia, and finally to “grok” that they have nonetheless perpetuated the lie that is the “dopamine hypothesis” just boggles the mind with its enormity. How can we believe anything they tell us about negative symptoms, now, when as one website informs us:
“Low D2 receptor-binding is found in people with social anxiety or social phobia. Some features of negative schizophrenia (social withdrawal, apathy, anhedonia) are thought to be related to a low dopaminergic state in certain areas of the brain.”
The atypical AP drugs induce a D2 receptor blockade as a matter of course. After all, if you don’t feel any reward-sense from your life and living, your normal dopamine being in an antipsychotic blockade, why would you want to change your clothes, or take care of yourself, much less bother to go to work or even think? But we have been led to believe that such negative symptoms are part of schizophrenia and NOT part of the drug treatments for it! No one told us they were taking away all our incentive to do anything, to even move or think. They told us they were helping us, not hurting us, not destroying our lives!
Even more diabolical, to my way of thinking is the idea that some doctors actually add an atypical antipsychotic onto the treatment of mere depression. Can you imagine how you would feel if you were taking an SSRI (which is ineffective) and which already deprived you of sexual satisfaction or any sexual feelings at all, and then you are given an adjunctive antipsychotic that subsequently deprives you of dopamine? It might add twenty to forty pounds or even more in no time, up your cholesterol and blood sugar, and then deprive you of any feelings of reward or pleasure…Ah but it will boost your antidepressant’s antidepressant activity? J’en doute fortement… I doubt it highly!
What do the doctors care? Either they bought into the drug company’s literature and haven’t read anything independently since med school…or they are on the take themselves from Big Pharma in some fashion and don’t give a damn.
We need to be on the look out for ourselves, because god knows the doctors are not on our sides, most of them. They cannot be. This is their bread and butter, folks esp the psychiatrists and if they cannot prescribe pills, what will they do? They won’t be “real doctors” any more and their prestige will plummet yet again…OH NO! The fact is, they need to learn to do psychotherapy again, or get out of medicine because they cannot prescribe pills that do not work, and there are none that do! None that do reliably and well or better than placebo. In fact, except for the occasional use of a benzodiazepine, and the judicious use of cognitive enhancers for the proper people, and meds for sleep, I am convinced that precious few drugs in the psychoactive armamentarium are worthy of anything but the dustbin.
I think most are ONLY placebos, if they do anything at all. Frankly. And I say this despite having once written testimonials in praise of Zyprexa and other drugs…I dunno, I dunno. How could Zyprexa be anything except a placebo? It is a dirty drug that hits nearly every known neurotransmitter of importance…And yet we do not know how it does what it does…and it has horrendous side effects. That much we know. Since we do not have any reason to think it is the action on dopamine or serotonin that is the “antipsychotic” activity, in essence we cannot say why or if it does anything at all. ALL the AAPs drugs work on the neurotransmitters in a more or less dirty fashion. In fact the OLDER drugs were less dirty, being more specific to just dopamine!
I reiterate, there is no “chemical imbalance” in schizophrenia, or bipolar “illness’ or in depression. No one has ever proven or shown any such animal ever. Only after patients have taken a drug to “treat” such conditions is there ever an “imbalance” and this imbalance is a direct result of having taken the drug. PLEASE remember this and question your doctors next time they warn you that if you stop your meds your “chemical imbalance” will reassert itself and make you sick again. Ask, “What chemical imbalance and where did it come from? What chemicals and what is the normal level I should have?” I know I know, the doctor will say, dopamine, if you “have” schizophrenia, or “serotonin” if you “have” depression. Lord knows what she will claim if you “have” bipolar tendencies of one sort or another, as so many millions upon millions of Americans these days have been told they now do…But it isn’t true. Not even if they claim it is. There has never been any proof of altered neurotransmitter levels and in fact it is the opposite: drug-naive people with schizophrenia and depression, that is to say, those who have never taken any medication, have been shown to have the exact same dopamine and serotonin levels as anyone else!
As for those who suffer from the condition called “bipolar” — You know, it used to be a very rare condition, manic-depression. Now, you see “bipolars” coming out of the woodwork everywhere. One used to have to have been crazy-manic at least once, to the extent of having been hospitalized to qualify for the diagnosis, and this made sense as it was restrictive and not a broad umbrella. Given that the illness was considered a very serious one, no one wanted to bring too many within the definition. Now, with so many drugs used to “treat” (ha ha ha) the condition, and with the help of DSM IV and 5 to bring patients to the drug companies’ financial assistance, you need only complain of a garden variety “depression” to be counted as bipolar…
But remember: 1) the drug companies treating bipolar etc only want to make money, 2) the drugs treat something — a neurotransmitter imbalance that doesn’t exist 3) bipolarity is a fiction that keeps lengthening, like Pinocchio’s nose, with every newly expanded definition…
Think about malaria, a real illness. It doesn’t make more people ill just because it gets redefined. Malaria is caused by a protozoan (injected through the bite of a mosquito), and it sickens people who are vulnerable to the ravages of that organism inside the body…in the same way each time. You don’t “get” malaria more because a financially- interconnected organization of doctors/drug companies decides to change the definition of what constitutes malaria. No, you get malaria the way people always gotten malaria, largely through not using mosquito nets and other preventive measures…i.e. via a mosquito bite.
Ay, this is NUTS! It should not be so fricking easy to fit everyone into a diagnostic category of mental illness. Emotions are NOT illnesses by definition, they are normal and necessary, even excessive emotional reactions are quite normal; they happen every day to everyday normal people. Some cultures define themselves by their emotionality! It behooves us to remember this and not pathologize it.
So too, think of this: depression frequently is just sadness, folks. We used to know the truth of the saying, “This too will pass…” There are problems in living that are just problems in living, and I think that some people for whatever reason are simply miserable, without having a mental illness. They would not do better being labeled with an illness or being treated for one. In fact, I have seen people in states of abject misery do a great deal worse under the burden of a label…
I have had it. I do not trust a drug company or a prescription at all, none of them. The foxes are in charge of the chickens and they are up to no good, no good at all. So this weekend I am OFF all Abilify. HURRAY! After that I start cutting out the Geodon…(I have already halved the Ritalin simultaneously with the decrease of Abilify. I had to, I simply don’t need the Ritalin as much, as I am not as sleepy. After Geodon, there is only the Topamax, which I take for seizures and migraines.. Have to decide about that one. I want to be off it, I really do. But can i?**
*Note that although some of these conclusions are my own, I drew most of the research I have based them on from my readings in Robert Whitaker’s fine books MAD IN AMERICA and ANATOMY OF AN EPIDEMIC. I highly recommend reading both of them, which can be accessed through the link I provide at the top of the page in my blogroll. The link goes directly to ANATOMY but MAD can be found easily through there. Good reading! And please do let me know what you think at any time. (Adding this note at a later time, very much the same information can be found in Dr Joanne Moncrieff’s books — a British psychiatrist who came to similar conclusions as Whitaker. Her book on antipsyhcotics is THE BITTEREST PILLS, and her book on psychtherapeutic drugs in general is THE MYTH OF THE CHEMICAL CURE.
**writing in Dec 2017 i have never been able to get off the Geodon or the Abilify, nor the other drugs, though i have cut the Geodon in half somewhat successfully. (I am unable to speak at present, but i do not believe the two are linked, as i dropped the Geodon/ziprasidone dose more than a month ago and the muteness started less than a week ago). That said, i still do not believe they help me. I just maintain that once you have been on these drugs for literally decades as i have been, more or less by force, then your brain changes in response and ends up “imbalanced” and in that sense alone does need the drugs.
Mosaic: a word that means from the muses, from Moses and a work of art created from broken fragments of pottery, stone or glass.
Even the first time, surrender was not hard,
though the grownups and mothers
with their drinks and swizzle sticks
undoubtedly thought it so when you volunteered
your only present that 10th Christmas
to a younger child who wouldn’t understand
being giftless at the tail end of a line to Santa,
nor your inherent sin in being born.
Such generosity should have stayed
between your concept-of-God and you,
but grownupadmiration (you could not hope
to make your act unpublic) sullied the soap
of any generosity’s power to cleanse you.
Other atonements followed, only one
almost perfect, being perfectly anonymous
spoiled by an accomplice’s later telling.
Perfection? You never made that grade,
your terrible love for God demanding all life
from your life. No one told you, “Live a lot,”
not in words that made it matter, though
they doubtless counseled, “Live a little.”
You were always in school to be perfect,
never knowing that life is a classroom
where one learns to love flaws
by throwing bad pots, to shatter
them with careful hammer,
assembling beauty from broken things.
I do not believe I posted this poem here before. I may have but I doubt it as I was going to publish it in a print journal. Instead, I never sent it out. So instead I choose to “sacrifice” it here. (meaning: If i publish it online here I cannot do so in a print journal…so this is for you, folks!)
I am going to tell you about the child I was when I was very small, as small as I can remember. The first thing I remember about myself as a self, was…well, what do I remember? This is hard. For one thing, while I am down to only 5mg of Abilify, I still take 160mg of Geodon, but more important I still take 200mg of Topamax, an anticonvulsant that has known adverse effects on memory and cognition. Whether it actually interferes with what I can recall from childhood or not, I could not say…Perhaps ECT did that, 16 plus 5 sessions of ECT could have done a number on my brain, especially as I had active neurological Lyme disease at the time. The Lyme-literate neurologist advised strongly against ECT, but the hospital psychiatrist forced me, at least through the last 8, after I refused to go back, by getting a court order and drugging me on so much Thorazine I had no will.
Ah, but “They,” the faceless They of Authority, They say that ECT affects only short-term memory. Well, then, I guess just being 60 years old and having gone through trauma after trauma in the present decade alone surely could have wiped out memories from a half century ago and before. Whatever is the case, I must now scour my brain to recall what I thought I could recall easily.
Marjorie M, an old friend of my father’s, related a significant story recently — about me at age 6. Given our bedroom when she stayed with our family to recuperate from surgery, while my twin sister and I camped out somewhere else in the house, Marjorie was relaxing in my twin bed, alone, when she was surprised by my little face in the doorway. “Hi, Mrs M,” she tells me I said. “Why, hello, Pammy. How are you?” I looked at her with concern. “Are you all right, Mrs M? Are you lonely? Do you need anything?” (or something to that effect..) I am astonished that even at age 6 I knew I needed to “do this,” although I think that my mother, who disliked Marjorie intensely, was probably ignoring her and I suspect knew it even then. But Marjorie says she fell in love with me at that moment. She certainly never forgot the incident. Bless her heart…
I forgot it, likely I never knew or understood its impact. Given that I was six, I had already made the decision the year before, when Martha was born and I was five years old, that since I would never have the older sister of my own dreams, I would instead have to be the older sister I dreamed about for Martha. I made myself the promise to Martha, the day she was brought home from the hospital, that I would do everything in my power to be in Martha’s older sister the OS I would have wanted.
In all our childhood photos, until the year I turned 14 and stopped permitting photos to be taken, you see two things: I am almost always featured next to Martha, with my arms around her or somehow touching her, protective of her, and my twin sister is with the dog or otherwise occupied. Always. You might not be able to tell which twin is which from our facial features, but you can tell us apart from that. One of us is with Martha, and you know I am that twin for certain.
It is the greatest loss to me, the worst thing, the — I can only say this: I am not a quitter, but I was unable to complete that most important of assignments because of what happened to me in high school, whatever you want to call it. I either became ill, or troubled or had too many problems…whatever it was, I simply could not function well enough to do all that I promised myself (and Martha) I would do for her. I could not BE the person I needed to be, the functioning adequate teenager, in a good enough way to be a good enough older sister to her.
For instance, just take the older sister/younger sister Q and A that ought to have taken place but never did after I was 14. My own menstual periods took me by brutal surprise. In addition, I never did learn “the facts of life” (ie sex) as we called it in those days, not for real, not so I understood them, until after college. I vaguely knew the “birds and the bees” but not really, not so I understood the fundamental mechanics of sex at a time when most teens were experimenting with relationships for real. (Not me… I went to an all-girls high school and even though it was not necessarily true for the other students, for me, sex was never on my mind, I never understood the urge or the drive, not then and frankly not ever…) Given those facts, you can see that the OS/YS tête-a-têtes about sex and dating etc just were not going to happen. I didn’t know enough, one, and two, even if I had, I was unprepared to talk about anything so intimate with anyone.
As it turned out, though, Martha had plenty of friends and soon clearly found people to talk to when I could not. Thank heavens, because if the roles had been reversed, she could have taught me plenty! Only they could not be reversed, because I was the OS and she was the YS and things had to stay that way… I think to this day, though she doesn’t say it in so many words, she misses, if not resents, losing the OS, the me she once had…She misses surely the OS promise she knew I made to her from the outset.
Oh, Martha knows it wasn’t my fault. Life is life and shit happens. But she misses me, the Pam that never quite panned out because of everything that “happened” after I turned 14, 15, 16 and then it went on and on and on…She reminded me recently that even before I was taking any medication I told her that life was a minute by minute, hour by hour, day by day struggle just to survive…and I was only 24 or 26 or…This horrified her. To this day she can scarcely bare to recall my telling her. Or of seeing me catatonic in the State Hospital. She left crying and I think could not bear to visit again for years…
We create our reality, people tell me. Our thoughts are very powerful…If so, I created from a very young age, a very harsh reality, one where in cahoots with a punitive God, I had learned over the years I had to be selfless to the point of self-obliteration, as well as nearly mute. But not so mute as to be noticeable…because if you were noticed then you were not completely self-less. (I told you it was a harsh world…) I had to speak just enough so as to NOT be noticed, but never about me or my concerns. ONLY about others…and then listen to their problems ONLY. I had to be a pair of ears pinioned to the wall. Wear drab no-color colors, unnoticeable. Fade into the woodwork, but only in a way that was unremarkable…As soon as someone noticed that I was fading, it was evil! and I had to add just enough color to fade into the crowd anonymously yet again, self-lessly.
No wonder my handwriting almost disappeared into invisibility. (I would have willed my fingerprints away if I had been able to!) Can you imagine my mortification, and the self-mortification I had to practice when bank tellers noticed the minuscularity of my signature and made me sign checks a second time? They NOTICED my attempts to disappear, and in doing so, made me appear loud and big…which was bad. So the voices took it out on me, making demands that had to be answered and hidden in turn.
Why am I writing about these things? Because despite the pain it has caused me, I still believe in self-denial. I believe in self-lessly doing things for others, and in NOT being the center of our own universes ALL the time. I think a good bit of doing for and thinking about others in THEIR universes is good for the soul, so long as they do not abuse you. And I do not believe that others need to know everything good that we do. I do not think we need to broadcast every good deed on Facebook or to our friends so they know what good people we are! So what if it remains anonymous, or between God and you? Maybe even God doesn’t need to know it if you do something for someone else…and that someone else doesn’t need to know who did it either.
Live with the anonymity. You can do it. You can be self-less once in a while and not die. Your self is strong enough tolerate not telling the world everything you do for others…Trust me. You do not need kudos, confirmations or smiles for everything you do. You just need to know that someone else is better off because you did something or gave away something you could have used, but decided to give it to someone else instead. You sacrificed something. Not that you gave it away because you could not use it but because someone else needed it more than you did.
Try it, a little sacrificing especially in the United States is a good thing to learn. But make it real, don’t do it falsely. Giving up time or giving away something you don’t use or have any need for is no sacrifice. Sacrifice: from the Latin, sacer, “holy” plus facio, facere, “to make.” Something is only a sacrifice, something is only made holy, if it is a real loss and a real gift at the same time.
I am assembling my own private, so to speak, “treatment team” for recovery. This is because it turns out that to go to any facility for real no-drug no medication recovery, somewhere like Windhorse in Northampton, Massachusetts, or Cooper-Riis in NorthCarolina, you have essentially to be filthy rich. Neither place so much as returned my application email (supplication) once they knew I “only” had about — well, let’s just say that I could not afford their fees of up to $20,000 per month, and certainly not for the requisite six month program just to start with! So essentially, you have to be wealthy as Croesus in this country to get any help whatsoever to recover, or you are on your own.
Luckily a little family assistance does permit me to hire a few people to help me — which I know some people are not fortunate enough to do. So I did — I hired an art therapist this past week and I meet with her next thursday! This is something I really look forward to. While I do art daily, I do not usually express my feelings easily or spontaneously doing art. I have to think things through doing art. But i want to do it quickly and find out things or learn to let go and feel my way doing art. And I have never done art therapy, at all so I dunno even what it can offer, except that I cannot believe it won’t be helpful, esp now that I am done to 5mg Abilify as of Saturday. And no abilify at all by the following Saturday, if it turns out that I can tolerate the drop to nothing.
Now, I do take Geodon as well, so I think it will be fine. But we will see. So far so good. But I did say that I would take it more slowly if I ran into problems. Once the Abilify is out of my system, I will wait a little while, then start reducing the Geodon. No sense in waiting too long. If I have no difficulties apparent from the loss of Abilify, why wait? THEY thought i decompensated almost immediately at Yale New Haven Hospital from having “nothing on board.” My contention is that I decompensated due to the abuse I suffered at their hands, and as a result of their megadosing me with IM Haldol, torture for anyone.
That’s about all the news I have for now. And it is getting late so I’d better go to bed.
Oh, by the way, if the pictures look a bit different, it is because they are done with markers, copic markers for the most part, and not with colored pencils….So you are noticing my use of a different medium.
When Monica Cassani posted this video (see below) on her wonderful blog, BEYOND MEDS.com today, I was not sure I would watch it, mostly because I often do not have the patience to watch videos, no matter who recommends them. (Sorry about yesterday’s recommendation, an hourlong one no less, but it is vitally important to me and my topic…I still highly recommend it, if you cannot read Anatomy of an Epidemic…). Nevertheless, something about a video on treating trauma, perhaps the face of McElheran on Youtube, perhaps just my mood at the beginning of this day, impelled me to click on the little triangle that started it playing. I was pulled in almost at once. In fact, I was soon in tears, because McElheran may speak to us all, but most importantly she spoke to me…her words on trauma included me, personally, for once.
That she did so, moved me beyond words, because at that moment she validated my own manifold experiences of trauma, which were mostly NOT of potentially mortal events, even if I may have believed them to be so (when paranoid or psychotic). I will embed the video here, so you can watch it now, and come back to my blog post afterwards if you so choose. Or watch it whenever you like. It is — truly! — only 16 minutes long, and very compelling, so do not worry that it will take a lot of time.
Something about what she talks about reminds me that “Nothing human is alien to me…” We are all capable of everything, and anything, given the proper circumstances. Her compassion for human behavior is astonishing and moving beyond words.
I need to say this because no one who “knows me” thinks I am “capable” of things like calling people such vile names as those I called the aides and nurses regularly at YNHPH, or of stripping and defecating and smearing feces without even thinking or considering the consequences… But those are important words: “without thinking” and “without considering the consequences” because they indicate that I was behaving wildly impulsively, as indeed I was. Think about the situation: Six to eight people, some of them security guards (self-professed former police officers) had just violently and brutally assaulted me, thrown me onto a bed, held me down (causing physical pain to the point that I screamed in reaction) and pulled down my pants, giving me three intramuscular injections into the buttocks, then holding me down some more until they felt “safe” to let go…(One of them actually telling me they would press charges for my kicking her in the stomach while she was restraining my knees!)
Once i was freed, I made a dash to get out of the room, wanting to “do laps” around the “square” hallway that gave the Washington Square 2 unit its name. No deal. They physically prevented me from leaving the small single room, that had nothing in it but a hospital bed and tray table. I recoiled, enraged and manically in need of doing something, anything! Suddenly, I felt my bowels engage, roil, want “to go.” But the bathroom was down the hall…No matter, what the F—! Who gives a shit, in fact.
Without thinking a second thought about it, I simply pulled down my pants, squatted, and unloaded on the floor, to not so silent on-lookers astonishment and incredibility. Then I removed my clothing altogether. But another WTF moment seized me, then. The steaming pile of sh-t was there, and suddenly I “knew” what to do with it…and I did not give a sh-t that this meant using my hands or getting it all over me or anything. I just didn’t give a flying femtogram. I do not know why. I didn’t even smell anything. I just picked up handsful of the feces and smeared it across the walls. But not blindly and wildly, no, I was writing something, I remember now, I wrote something on the walls with it, though I do not know what any longer. And I do not think anyone took the time to read it. I do not believe anyone bothered to notice that I was not merely smearing but writing in shit...
The point is, I did this as a response to trauma, small as you might say it was. I felt traumatized. I felt brutalized. And I felt and was out of control as a result. This is not to say that my impulsive behavior served any purpose other than venting rage and sheer revenge at my abusers. It certainly won me no friends and no compassionate understanding from anyone. It could have, someone might have understood it for what it was, and seen that what they were doing to me was in fact brutality and traumatizing…They had after all diagnosed me with PTSD, so WTF did they think they were doing?
It doesn’t help, frankly, that “Dr Angela” believes that they were “on my side” and “doing their best” and “actually helping me” all along. I do not agree. I do not believe that. I think they were hidebound in their determination to break me, and if they could not see that they were perpetuating harm, they should have.
Okay, okay, okay Pam. Calm down. Calm down. Remember you are practicing forgiveness, not worrying the sore into an infected mess! 8)
This is hard. It is so difficult to forgive and let go of harm that no one admits to having done, one, and two, claims was actually for my own good. To help me!
Bull feathers! I still have exquisite backside piriformis muscle pain when I move in certain ways or even sit down on my right hip. And if I take off a T-shirt with the usual crossed arm movement, it causes agony in my deltoid muscles from the injections they gave me there too.
But forgive and move on, forgive and move on…I need to take a deep breath. Think about other things. Get ready to go out for coffee as I have made a date with an old friend of mine I haven’t seen since that debacle at the Institute of Living last winter. We always have great talks. It will be good to see her!
Yes, I will leave this on that note. The fact that I do not isolate myself, but that I have lots of friends and do things to keep myself busy and fulfilled and purposeful in life. Trauma and memories and flashbacks of trauma may still get me, and they get me in the gut a lot, but they haven’t got me completely over a barrel the way they might have. There was a time when I was more isolative and friendless but not any more. Not anymore.
I spent more than three weeks at Yale’s psychiatric hospital in August being tortured, if not by seclusion and mechanical restraints (my PAD restricted the use of those and at least at Yale they listened) then being held down by armed security guards (only their guns removed) and injected innumerable times with a multi-injection cocktail of drugs: Haldol 10mg, Ativan 2mg, and Benadryl 50mg, despite my objections that I have a paradoxical reaction to the last one. They said I could not refuse because I would have side effects to the Haldol without it. Understand this please: They deliberately injected me with a large enough dose of Haldol (without any basis to know I needed any more than the usual 5mg or even 2mg) as to knowingly cause side effects, side effects they knew in advance would be so distressing as to not allow me to refuse medication for them before they even happened!
What sort of dastardly drug is this that it hurts as much as it “helps”? Ah, yes, let me remind you, lest you have forgotten, that Haldol is the medication political dissidents in the 1970s were given in the Soviet Union to subdue them after they were diagnosed conveniently with “sluggish schizophrenia,” an illness “everyone” in the West “knew” didn’t exist except in the Soviet political playbook, designed solely for the dissidents. The American Congress, Democrats and Republicans alike objected then vehemently to Soviet treatment measures, calling Haldol injections the dissidents were given nothing less than “torture.” None of the members of congress ever mentioned the widespread use of Haldol in American mental hospitals, though, for that wasn’t torture, was it? “Those people” – American “schizophrenics” need Haldol, they were told by establishment psychiatry, “they aren’t like you or me and don’t feel the same way when they take it…”
Now, I ask you, how can a drug torture one group of human beings but be a decent and humane treatment for another group? Answer: It cannot. Haldol IS torture, pure and simple, for nearly everyone who takes it. Just ask people! You cannot label one group tortured by a drug and the other “humanely treated” who endure the exact same effects. In truth the only group of humans who like Haldol are hospital personnel, who no doubt appreciate the fact that it in fact it does subdue patients into docility…usually. This means they have less work to do and thus they consider it an effective “treatment.” (Alas, in my case, I confess I was more likely to respond to forcible Haldol injections by stripping naked, defecating on the floor and smearing feces on the wall as by becoming more pliant or compliant. Why they managed not to see the resultant worsening of my symptoms and do something about it I do not know but they persisted in “treating me” and made things worse and worse…Indeed, I screamed more each day than not, for most of the three weeks-plus that I was at Yale New Haven Psychiatric Hospital this past August. So how good a “treatment” was Haldol? Aside from causing me exquisite mental and physical torture, I mean? In point of fact, despite megadoses, no injection made me more compliant, made me into a “nicer,” better patient, and easier to handle. The Haldol, even when probated and regularly forced upon me, didn’t work to their purposes…I was an impossible patient for most of the three-plus weeks I was there, Haldol notwithstanding. So what was the point? And why couldn’t ANYONE see that they were making things worse?
However, that is over with, and what I want now is to tell you that things are going to change, and change radically. I may not have your support in all of it, or any of it, perhaps, but I an attaching the video below as a link because the book it is related to was deeply influential both on what I wanted and did not get at Yale, and on what and why I am doing what I am doing now. The book, as I have mentioned before is Anatomy of an Epidemic, and the video gives a good hour long summary of it. It is a good place to start if you have difficulty reading a whole book on the subject or simply would like an idea of what you are getting into.
But first of all, the video doesn’t tell you this, “Mad In America” does — Robert Whitaker’s earlier book on the treatment abuses of the mentally ill in America — the foxes are guarding the chicken house. What I mean by this is: the Big doctors, by and large the influential ones who affect how our doctors treat us, are in cahoots with the Big Pharma drug companies in developing and promoting drugs that never worked and basically never had a chance to “work” because they were pushed into production and sales before any real research was done.
Maybe you don’t know this but listen: Thorazine was never a real “anti-psychotic” drug. It was a tranquilizer, a major tranquilizer. That’s what they used to more honestly call it. It calmed and tranquilized patients so they were more amenable to hospital treatment or the lack thereof. This was good for all, because the fact that patients were quieter meant that the nurses and aides got to show their kinder, nicer, nursier nursing sides to these “sick” patients, and the “drugged up” patients stopped fighting and finally appreciated being taken care of. It seemed a better situation for all, all ‘round, at least in the big state hospitals where megadoses of Thorazine were routinely handed out to “chill” patient populations into complacency. Less violent/resistant patients meant that the nursing staff could act a bit more like their job descriptors.
But now, suddenly, because someone was calling Thorazine an “anti-psychotic” drug as a marketing ploy, as if it treated the actual psychosis itself, they began to believe that it did something “anti-psychotic,” which in fact it never did. Not really. Not if you asked anyone who was treated with it. It never really helped anyone’s core symptoms. It just dulled you so profoundly you didn’t give a damn, or worse, it made you so mad with akathisia that you forgot how crazy the voices could make you feel, because you were literally wild with internal restlessness and other “antipsychotic” side effects and you had to pace all day or rock in your chair or do other “really crazy-looking shit” the doctors told you was just a part of your illness. Once Thorazine was thought of as a treatment drug, rather than as a behavioral modification drug, it changed the game altogether. It changed everyone’s thinking about schizophrenia (and by extension all mental illnesses) in a way that seems to have altered the course of American history itself. Certainly it changed American psycho-active drug-manufacturing for good, though I can only wonder at those involved with the actual design of drugs and how they can do what they do, surely being aware on some level that what they do has no foundation in science whatsoever. Let alone in honest research…
What am I talking about? Well, if Thorazine, which was originally used for anesthesia, was really just a behavioral modification drug, really, honestly and truly, and did not, if truth be told, treat or remediate any so-called schizophrenia symptom, then what the hell was all this dopamine hypothesis and research all about in the first and the last place? Because any supposed honest research started with Thorazine’s mode of action on the neuron’s dopamine 2 receptors. Supposedly, said those brilliant researchers, looking to explain how chlorpromazine/Thorazine “treated” schizophrenia symptoms so effectively, the drug works by blocking D2 receptors on the post synaptic neuron (Don’t worry if you don’t know what I am talking about…just keep reading).
The point is, Thorazine and dopamine have been inextricably linked for and to the next four decades of schizophrenia research, and all subsequent drug development stemmed from that link. Once that connection had been made, ridiculous and wrong as it was (schizophrenia and dopamine being related, or even correlated, simply was never shown), the stage was set for the “revolution” in brain illness research that has brought us such travesties as “bipolar infants” as young as 2 years old, and the H-Bomb-mushrooming of ADHD cases that threaten themselves to cluster-bomb into more bipolar disability cases than the country can conceive enough SSDI for…And thence to such further travesties as doctors using a brutally potent “atypical” “antipsychotic” (which is in truth no more “antipsychotic” in action than thorazine) like Zyprexa for “off-label” uses like anxiety disorders. Why? For fear of using benzodiazepines, perhaps, but just as often in conjunction with those drugs from hell. Drugs like Ativan and Xanax and Klonopin that are prescribed for people with “major mental illnesses” and the walking wounded as well, both like water, prescriptions that cause devastation in their wake and much more anxiety than they resolve.
It seems to me that for every MD who knows never to prescribe a benzo for anything but occasional use and refuses to, there are 40 who say, “take this three times a day and don’t call me unless you have problems”…expecting no calls.
But I am side-tracked a bit. Or have never quite gotten to my subject, which as you know is me, my own “illness” and my own future. I do not know frankly what was done to me in the past vis a vis these drugs, that is, what was caused by what. As my good friend Josephine says everyone now says, It is what it is and you can’t change it…So I am me, with whatever I am or have. But at the same time, i cannot continue to accept the premise that medications are the only and best way to treat me.
After all, I take meds every day and you all know that I have ended up in brutalizing hospitals regularly, quite despite this. I was hospitalized just this past August, in fact and this past winter too…So what good has been my taking meds, including 2, not just one but two atypical antipsychotic drugs, if they do not work to keep me out of the hospital? Not much, I venture to say. Not much…
Well, but…If they have enabled me to do art and write poetry (when I did that) then they were very good drugs for me indeed. For that is my fear: That I can only do art or write, even if just in my journal, when I take these medications. If so, those would be two very good reasons for me to feel it necessary to keep taking them. I cannot live without something worthwhile to do, and I have no family, no children, no purpose, no career, nothing else but art and writing to live for…
That said, what is the proof that my medications are what make me ME? That they make me write and do art? Essentially and absolutely? None at all. And there is much suspicion that the meds can do harm both in the short and long-term. Nothing at all is known about what happens when people take these drugs for decades. I am not sure I want or need to be that particular guinea pig. Now, “Dr Angela” is, as you may or may not know, a psychoanalyst as well as a psychiatrist, so I told her that I wanted essentially what Joanne Greenberg’s “Hannah Green” got from “Dr Fried” (in reality it was Frieda Fromm-Reichmann, the renowned psychoanalyst who successfully treated Greenberg’s schizophrenia) in I Never Promised You A Rose Garden…No promises, perhaps, no rose gardens, but at least the opportunity for cure, recovery, and an end to treatment. And NO MORE MEDICATIONS, WHICH WOULD TIE ME TO HER PERMANENTLY more or less.
I am off the first drug, Zoloft, and have been for more than a month. But it is not easy. I am bone-weary and feel like crying every day. Feel like I have never NOT been tired, never not fought off hopelessness and the feeling that if I were told I had leukemia I would cheer, “Finally! Thank god it’s over!”. That’s the truth, people. I sit in my chair, the same one I sleep in, and I sit in it virtually all day long. And though I am not addicted and do not need to (most of you know how easily I quit smoking when I need or want to) I occasionally smoke a cigarette just to ease the pain…which is physical as much as it is mental and emotional. I may not seem depressed to those of you when you see me, because I rarely “let them see me sweat” and would never burden you with me if I can help myself. But there is also the fact that if and when I see you, just that fact cheers me, lifts my spirits, thank god, and is a rescue and a blessing, so thank you for that much! The nights are hard, but sometimes the days are harder…Nevertheless, Dr Angela has agreed NOT to speak to me of going back to the Zoloft, not unless I ask for it, because she understands that I want to tough it out, and that i believe that antidepressant drugs cause more depression than they cure. I believe if this is a relapse it is solely or largely because I started taking Zoloft again in 2007, when forced to at Mt Sinai, even though I told them I was grieving Lynn L’s death and because of Joe C’s illness and they ought to let me grieve! If I had been taken off it promptly, or never put on it, maybe I would not be such an easy prey to despondency now.
Nevertheless I am going to go on the record of the past predicting the future, and NOT take Zoloft (as of now) and “get through this somehow…” because despite everything, I haven’t died yet, not of despair, and while i have done a lot of damage to my body, I have managed NOT to kill myself so far…Chances are, then, that I will not. Of course the future is unknown, but all I can say is that I do not want Zoloft or any AD drug at this moment, and can take the pain.
I have cut down on the Topamax, to 200mg but because of recurrent migraines need to keep that where it is for now. The next drug to go will be Abilify. I would rather we stop the Geodon next, but I do not think I can tolerate taking Abilify sans Geodon — not without being incredibly irritable — whereas Geodon without Abilify basically does nothing for me. A steady reduction, not too slow, but not so rapid I cannot tolerate any symptoms that develop. The whole point, in the end, is that should I develop symptoms (and that is not a certainty) we are supposed to be able to deal with them in therapy and not go running to the hospital or back to some drug.
(Okay, this is the point in the argument where even I start getting nervous. But I am determined to do this…I want it, I want it, and I need to try it ONCE in my life before I die. I need to know what I know, what I can know about what I need and do not need in terms of psychoactive medication, if that is even possible… Some much depends on placebo effects you know, and on influences of that sort that I wonder if any of it can be sorted out, and how much is going to be sheer determination?)
Oy, it is getting late, or I would continue. But I need to sleep and so do you. I am certain there is much more I ought to have said or explained and did not. Feel free to ask questions or query me about your own concerns if you have them…I am open to any thing, except anger.
Thank you all for your love and concern and if for nothing else than for simply being there to listen and read this.
I mostly drew this photo because I wanted to understand the mechanics of how to draw a crowded room, which I haven’t done much of before. It made me nervous so I simply forced myself to make mistakes and do it with permanent markers that gave me no option but to work with whatever I did “wrong”…
“In India when we meet and part we Often say, ‘Namaste’, which means: I honor the place in you where the entire universe resides; I honor the place in you of love, of light, of truth, of peace. I honor the place within you where if you are in that place in you and I am in that place in me, there is only one of us." ~~Ram Dass~~