30 Things to Stop Doing to Yourself. From Bucket list Publications by Marcandangnel…words to live by. I loved these and while i rarely reblog someone else’s page or simply link to them. These 30 sugggestions were so simple and cogent i simply had to. Way to go marc and angel!
more later but for now i am on the train home from north carolina ans trying to write more on my. november novel. TTFN. Love you all!
Several years ago, someone told me something that paralyzed me for years…She said, You can’t write fiction. Period. Oh, she granted that I could write poetry and creative NON-fiction yadda yadda yadda, but she, I expect, wanted me to stop writing fiction for some reason, I dunno why…and so she told me I was NO GOOD at it. Needless to say, being as sensitive a writer as almost all writers are, I took her words to heart, and I believed her. Why? I have no idea. My first writing teacher at the University of Hartford, who had taught writing for years, told a colleague that my short story (at 60 pp)was the best he had had from any student ever. Along the way other teachers had said similar things. Even my agent for the book DIVIDED MINDS just loved the very same story that this critic decided I could never write fiction because of…
But I didn’t listen to my agent, even though she had gotten my sister and I a contract at St Martins Press and had worked at big-time publishing houses for years. She knew publishable authors, this other person was an independent editor of technical writing, …but you know what? I listened to her strictly because she had something negative to say to me, and I always believe those who want to hurt me…ALWAYS. If someone tells me something good about me, I think they are lying or trying to get something from me. But if they tell me something bad, or hurt my feelings? Well then, they must be being honest and want to help me, surely!
Where I got that crap from I dunno because this person clearly didn’t want to further my development as a writer, she only wanted to crush me. I would never have told anyone to stop writing, EVER. It kills them inside. Unless they happen to have been raised in such a way that they fight back…I was not. I simply folded and said to myself, “She told me I was no good, that I would never be able to write fiction, so I might as well give up right now.” And I did. For ten years.
Then I got an email about NaNoWriMo in my inbox and something inside told me I had to do it. National Novel Writing Month is in November of each year and you are supposed to write approximately 1700words a day (or a little less) to end up with a 50,000 word novel by the end. Of course, that is really only a novella, but the point is to say you did it in only a month. Truth to tell, I have written and never shown anyone, two novels, of 300,00o words each, one in only three weeks time. Then I rewrote it in nine months, But I felt it wasn’t good enough for public viewing so I never showed it around.
Anyhow, the point is, I can write a novel, whether good or bad who is to say, but I know I can do NaNoWriMo and I decided to take back my power from this chick who decided she had the right to tell me what I could and could not do. EFF her. No one can decide for me what I can or cannot write. If I am not “good at it” now, that is not to say I cannot get better. That was her thing. She thought no one could improve by practice! Fool!
I will deliver an installment of my novel in a few days. I already have 32 pages. I won’t dump it all on you, but I thought you might like a taste.
“High-quality visual arts projects (submitted in digital format), poetry, creative nonfiction, comics,short fiction, book reviews, essays, creative dream recordings, etc. by January 14, 2014. Not all submissions will be accepted, but I encourage everyone to submit his/her work.
This is a great opportunity to showcase your creative work – and, once the journal is completed, you’ll have the opportunity to see it in published format and to purchase a copy of the magazine (likely for around $15, but I’ll know for sure as it gets closer to publication).
Email submissions or questions to firstname.lastname@example.org by January 15, 2014.”
Why not submit your best art/ writing samples if you happen do work on the subject of dreaming or dreams? Or try to do something for the journal now. It can’t hurt, and you have a chance at publication online, and maybe even in hard copy!
More to come but for now I just wanted to report that I am doing great. There are clear reasons for this, and they are not what you may think or wish to think. But though it is true that “it is what it is,” whatever is now, needn’t be the same thing tomorrow. Yeah, I know, that’s completely cryptic, but I cannot say any more right now.
I will only say that things are much better today than last week, and a thousand times better than the week before. Which is what matters. That things are looking up and that I am looking up and outward at the world, not curled up, shriveled up and looking only inward.
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.
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 ended up at the local non-hartford ER on Monday/Tuesday morning, in the very wee hours, in so much exquisite agony i could not move off the chair i sleep on.
One thing you notice in this definitely unprofessional picture is the presence of a single crutch. I hated being at the ER but if I hadn’t called 911 (after pulling my emergency cord and wondering if anyone would ever come to my door…and finding out that someone had actually called 911 for me after the loud buzzer over my door had sounded for at least 1/2 hour…). When I hear someone’s emergency buzzer, I always knock and try to go to the person, find out if I can help them in any way. i dunno who called 911, but why they couldn’t at least let me know they were doing so I dunno. i felt so alone all night, and then at the ER. it was almost worse, because of course I was treated like an hysterical psychiatric patient largely, and ignored. Truth to tell, my hip pain was not going to kill me, and apparently the testicular pain of the young man in the other part of the cubicle, could have killed him (so says Dr C, but according to her it would kill via “shock” so she means because of the degree of pain…So I am skeptical. I think the reason he was getting so much attention was because “Everyone knows” that testicle pain is horrendously awful and shockingly painful…”everyone” because of course MEN have experineced it and let us all know how bad it is. Women have experienced childbirth tearing them literally apart for eons but no one goes on and on about how that pain needs to be attended to at all costs. No we just let them scream…SO, ditto me versus the young man with a testicle that did not apparentlhy need surgery but who was, I admit, the subject of a sadistic surgeon’s ministrations, and manipulations, even as the man denied that the young man needed his help. I mean, why stand there, holding a guy’s twisted ball in your hand, manipulating it in such a fashion that you kmow you are causing breathtaking agony, everyone who hears the sucked-in choked-off breaths of the patient knows it, why do that, what are you odoing? when you then in the next breath announce that this testicle is FINE, nothing that needs YOUR attention as a surgeon, in fact, you cannot understand why it is still causing the man so much apparent pain. But it is…The young man is nearly comatose with pain, and the surgeon doesnt’ even apologize. Only says, Well, you are fine, nothing here that needs me. I will check in with you later, but you are not a surgical candidate as far as I am concerned so you are none of my business.
But what I was saying was, sympathetic as I may have been with respects to the doctor’s sadism and disregard for all human feeeling. Nevertheless, it was apparent that the entire ER had sympathy for testicle pain, and youth, little to none for hip agony in a 60 year old bag of a woman with scars on her legs and arms and face…It was a matter of appearance and what and who was appealing, and I was nothing of the sort. Who did they want to root for or give a damn about? I was just a title 19 patient with nothing to offer, and since I had brought nothing but a key to get back into my aprt with me, I could not prove otherwise. Could I? Nothing to tell them I was worth anything but scorn and disgust, which they gave freely.
I knew in the end, that is., after 12 hours and very little had been done past a CT scan that showed piriformis inflammation, that I had to prove that I could function well enough to be discharged from the ER. I knew it would involved exquisite agony but it had to be done or they would keep me in the hospital because they would claim I could not function independently. SOMEHOW I had to prove I could get my own jeans back on, and dress myself. I knew that if I could do that they could not keep me, and I was desperate not to have to stay there any longer than I had to…which meant in practice that I wanted to leave ASAP.
It cost me more pain that I can ever express. I literally had to suck in my breath and flrce myself to “break my own hip” or feel as if I were doing so” in order to put my leg inside the pants and then manage to pull them up and zip the zipper. But I did it. SOmehow I did it. It felt as if I were literally stabbing myself in the abdomen each time I forced myself to do any abrupt movement like putting my right foot into the pants leg and pulling them up. But it would do not good to go slowly. A slow agony would never do and would only prolong something I could never tolerate. So I did the “white hot poker routine” of forcing myself to make abrupt changes in position and get things over with. And I managed to get dressed and eventually I was discharged and my dear friend Josephine agreed to come pick me up after she was through with her last housecleaning job, which was just then…
But where am I going with all this? Piriformis Syndrome, you can look that up. It is all very mysterious and not very common. But curable or at least temporary usually and treatable. So I am not dying and not even very ill, though the pain is mentionable! All I have been writing about, basically, is the pain, the dismissive attitude, and this, what finally transpired: I saw my doctor’s office’s APRN, Sara, who is very wonderful and while young doesn’t make me feel old and despised. She put me on a difficult drug to take but one that promises quick pain relief, if I can tolerate it: prednisone. And Soma for a muscle relaxant, which may or may not work. I will start the former tomorrow morning and try the latter as soon as I finish this blog post and can justify inducing sleepiness. She did not minimize anything, and I felt taken at my word and seriously. Neither as if things were being exaggerated for my benefit nor dismissed for the same reason.
I apologize that this blog post has been so boring. I am halfblind with sleepiness, because i have been up since 2:30AM, one, and two, the hospital lost my two pairs of glasses with prisms in them so I am using glasses that do not prevent double vision at the moment. Trying simply to see the screen and the keyboard is an effort that defeats me more often than not. You can imagine the effort to be eloquent or anything else is beyond the beyond.
But mostly I think I am just plain overtired, which makes it triply difficult to focus my eyes on any one object, let only make doubled images fuse into a single image. So I will stop for now. Take the Soma and go to bed. Thanks for your forebearance. If I promised an email to anyone, I will try to get to to. Remind me if you want to. I meet with my siblings Martha and Philip tomorrow so I may be busy for ao while but I hope to be in less pain and more able to get back to people who have written me about things.
Am working on continuation of the blog post from a couple of days ago. Sorry to take so long, but things are very stressful at the moment. The east coast heat wave broke yesterday at least, but I survived it largely without air condtioning, and that wasn’t easy. Thank heavens the downstairs community room has A/C so when I could stand other people staring at me or giving me the evil eye, I could go there to cool off.
I tried sleeping in the parlor downstairs as well one night, but someone found me (ah, an easy target!) and kept me up till 2:30am talking at me, until I finally went back to the 12th floor where I live, under the heat-absorbing black roof, to try to sleep in my 94°F-98°F (not including heat index) stifling apartment. Yes, I have 2 fans, but they only blow the heat around at such temperatures. In any event, sleep that night was not very successful. Even after the end of the heat wave, i have been waking every single morning with a pounding headache, dunno why and I cannot figure out the trigger…
Oh pore Pammy, woe is she! (Shut up, Pam, with your litany of woes! Others have it so much worse!!!!!) Sorry folks. I did get carried away a bit there and I am not generally a complainer about such circumstances…The sky is clear and cooler today and this bodes well. Every day is a new day and I am 60 and well and I thank gosh for each day that is granted me.
Anyhow, a new air conditioner is arriving today, along with a week of cooler weather! PBTG. But the truth is, the stone facts are, even when the temps are in the 80s, we bake, up here on the 12th floor with all the heat rising from the other floors. I asked the building manager when they were redoing the roof why they could not coat it with a white coating, but I think he just laughed at me. To do something so “different” seemed to him unthinkable. I dunno why, it would save everyone energy costs, one, and two, it is a very effective and efficient way to reflect sun rays and avoid heating the building in the summer.
Not to be listened to or heard is something I am very familiar with. It is why I want to write about the Dr Mary B. O’Malley’s deliberate misdiagnosis of BPD in 2003 and the damage it has done and continues to do to me for more than a decade. In fact it can be traced directly to the torture I experienced at the Institute of Living last winter.
I will be writing more on that in the days to come. But due to PTSD issues, this causes extreme stress. Even as I write this my fingers are trembling and I can feel my heart race. So I need to do it in small doses and carefully. Thanks for understanding.
My second human sculpture, Dr John Jumoke, holds a prescription pad that reads,
Rx: Art, Poetry, and Music.
I think that is a pretty good first line defense for much of what ails the human condition. That and a good dose of empathic understanding from people who eschew employing violence, sarcasm and undermining skepticism in their efforts to help others. Too often people who are diagnosed, as I was, and still am, with “schizophrenia” are rushed into treatment that degrades and humiliates, even as it inflicts terrible effects, not to mention side effects…all without curing the so-called illness. I am not convinced that a person with “schizophrenia,” given the simple luxury of TIME, and a safe place with really good, caring, kind and intelligent people who know how to help without hurting her or him, would not heal better and more effectively than with any of all the so-called miracle anti-psychotic drugs our billion dollar medico-pharma industry has foisted on us. And I say this even though I still feel that Zyprexa was a “miracle drug” for me, once upon a time, (though also the miracle drug from hell…) and that it gave me a life I had never known before. I say this even though I take Abilify and Geodon and do more art and writing than I ever have…I say this even though I am better now than I have been in decades. I think the drugs are only fixing problems that the system largely caused. And had I had the chance, way back when, I wish I had had the chance to fight back without them…
If I could do anything to fix the mental health system, in Connecticut or this country or the world, one small thing, it would be to end ALL use of seclusion and restraints, period. Violence begets violence, in all cases. In ALL cases. In fact, get this, I would change the prison system as well, so that punishment qua punishment would be a thing of the past. Punishment is only a form of revenge and it does nothing to change a person or make them better. It only makes society feel better the way a bully feels better when he or she smacks a victim upside the head for smiling lopsidedly. I mean this. Sure, people can do very bad things. Yes. And certain people may be so damaged that they are too dangerous to safely release into “normal” society. (I maintain that this is largely because of how we, as a society, treated them, either at large or in prison.) But prisons and penitentiaries, especially in America, should be seen as an abomination on God’s green earth.
They say a society is judged by how it treats its dead? Well, I think we are judged by how we treat our prisoners, and if so, we will be judged poorly indeed for we treat our prisoners like hated animals…Not like cats and dogs that is for certain, nor even like horses…No, because we generally treat cats, dogs and horses well. Rather, we treat prisoners like vermin, like roaches…and then we blame them when they behave like the vermin they have become!
Have I gotten off the subject? Well, some mental institutions are largely prisons to their populations of involuntary or coerced patients, and most patients, involuntary or not, are cowed into doing as they are told for fear of the consequences. So to a degree the prison metaphor is valid. But if you have been restrained and secluded, brutally, and for hours upon hours, for many days, as I have been, the notion that you are a prisoner becomes more reasonable. That said, I will advance yet another idea: that bad behavior should be treated, not punished. Yes, I mean that. We should treat the person guilty of repeated criminal offenses as if he or she has a treatable behavioral disorder, and not punish them.
I know this will earn me some outrage. But think about it. What good does it do to punish a person repeatedly? Does it do anyone any good to torture that person with “the hole” or with repeated cell extractions and mace in the face? Clearly it doesn’t rehabilitate them or teach them the ways of kindness. It only makes them worse, and in our system an in-prison offense can add years to what started as a short sentence. So we create hardened criminals inside our prisons. I ask again, what good did it do?
But if instead we took that person, guilty of an offense and treated them as if they needed help — help learning how to behave better — and all that might entail, perhaps we might end up not only with someone ready to leave the institution at the end of the shorter stay, but someone ready to stay out afterwards! It only makes sense to treat everyone, including prisoners, with kindness and understanding and education, and if you don’t believe this, you should for one reason only: it would cost less money. (Of course, the owners of the private prisons don’t want you to know this, because they MAKE money on all the prisoners who keep coming back or who never get out, in fact there is a whole industry based on keeping as many people in prison, their private prisons, as possible…)
But I don’t believe in prisons either. I think the institution is a nightmare. You put bad people together with one another and what do you get but people learning how to behave worse together! It is a truly ridiculous idea. Analogous to the hospital, which is currently the worst and most dangerous place to go when you get ill (because that is where the most dangerous infections are and are often out of control). In the “old days” prisons were merely waiting stations. Penalties were sure and swift, and brutal. But no one waited for decades in a crowded prison with society pretending that it was humane. Now, we pretend it is..I dunno. Do we pretend anything, or just not care?
Do we care at all that we warehouse so many millions in dead-end lives that only get worse by the day, and then deprive them the more if they manage to leave prison eventually and not return? Oh, we have three strikes laws to put a person in prison for life, but no one gives a damn that there are three strikes against any person who actually earns his or her way OUT of prison. Nowhere to live, no job, no money, and no safety net whatsoever. (Unless you happen to be a former governor of Connecticut, and then you have it made in the shade.)
If anyone feels moved to comment on this story or add to the discussion that I started yesterday under the video of Reshma’s recovery from schizophrenia, and Donna added to with her comments, please feel more than welcome to do so. If I get enough, I will create a new post out of them.
NOTA BENE: if you are a regular or even intermittent follower of Wagblog, and think that you have something to add here, and would like to contribute a post regularly or simply once in a while, please contact me. I am in the process of inviting contributors to Wagblog, but do not know everyone who might be interested in doing so. So if you are a human, and interested, let me know who you are. Send an introduction with your best writing as I cannot accept contributions I will have to edit to the point of rewriting…and umm, we have certain standards here, ahem, ahem, ahem. 8)
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.
I realize that doesn’t exactly illustrate the “blahs” but it represents the sum total of all the artwork I have done since I got out of the hospital in mid march…and I did it in one night, on a whim, as a gift to the wonderful social worker who just left a position in our building for the directorship of the community center in town. (I miss her terribly but she needed to move on…)
Anyhow, the point of my post title is mostly to explain why I have not written all month: I have not felt much like doing anything at all. I haven’t done any other art or writing, and all I managed to accomplish was to clean up my apartment, which only serves to paralyze me the more.
I will write more eventually, but for now I just wanted to assure you all that I am okay, just not feeling up to much and so not writing. When I am back up to snuff I will write more. (I might even film a tour through my apartment in desperation, just for something to post here, that is how bad things are…i am scraping the bottom of the barrel!) In the meantime, please don’t give up on me. I’ll be back…SOON.
This video was made during our “book tour” of 2005-6 after DIVIDED MINDS: Twin Sisters and Their Journey through Schizophrenia was published. I had not seen it for several years when my good friend, the poet Mizzy Hanley, located it by chance on YouTube. I am surprised, frankly by how eloquent my speech is, though I cringe, today, at some of the things I said. How differently my talks today are! In any event, much of it still holds true, though now I would couch things in somewhat different language, and might not so readily give the voice of certainty to such statements as “I suffer from schizophrenia.” Nevertheless, the comments underneath are certainly encouraging, and if it helps anyone for us to have said what we did then good.
This picture is Tim’s sister in law, Dawn, whom I drew at Christmas, in 2012. It took me about an hour. The elephant below is remarkable only in that it is my first painting, in oils, that I have ever done. And for that matter, almost literally the first time I have painted anything, except for a few portraits. I usually draw, in pencil or oil pastel. I have painted some acrylic portraits, in the past, but none recently, as I told myself I’d better learn to draw a few years back “before I go any further with painting.” I never ever did anything with oils at all. So if I achieved any success with the elephant it was completely by chance. I find oils very difficult. I do not know how to work with them, nor how to manipulate a brush or the colors, or how to do anything at all with paint. So this is an interesting journey, and transition, if transition it be. I do not know what will happen. Whether I will switch to oils completely, or simply use them desultorily…We will see. I am now working on another elephant painting, just for practice. Both of them started with the use of oil pigment sticks, which enable a sort-of drawing technique, very bluntly, and ended forcing me to paint, using either my fingers or real brushes. So it seems I am being led willy nilly to the brush and paint pot!
This last picture started as a doodle that I did of another patient at the Institute this winter, but I liked it so much (and the patient hated it!) that I finished it by changing her to make her unrecognizable. I would have given it to her otherwise, but she didn’t want it, so I said nothing more. But I gave it to my friend Bill, who loved it. In the mean time, I figured I would finish it as I wanted to and did. I love it myself, and would gladly have kept it, had no one else expressed interest in it. But once I knew Bill loved it, well, I knew I wanted him to have it. And it meant I took extra care finishing it when I did. I never really knew much about this patient’s story, nor about anyone else there. Nor did they learn much about me. I do not believe they ever knew what the staff was doing to me that last ten days, when they kept putting me into four point restraints. That was the point: I was in seclusion so no one had any idea I even existed by that time. No wonder I ended by screaming non stop and blood curdlingly that last night when they restrained me the second time for no reason. Everyone who had known of me had left by then. All the patients were new, and no one even knew I was there. I was aware of it, and I knew that if I didn’t scream, they would simply four point me for another 8-10 hours and get away with it…Well, enough of that. This patient did not mind my drawing her, for the few hours that I was allowed to be in the general population. In fact, I think she was flattered that I wanted to. Unfortunately, she was not pleased by the results of my efforts when she saw the drawing…and made her feelings clear when she saw the drawing.
One of my loyal blog readers, Donna, wrote a long comment the other day, and I asked if I could post it on the blog proper, as I felt it was important for her story to be heard. She said Yes, and so I am reprinting it here.
“I have many personal arguments against taking antipsychotics. First of all, I endured schizophrenia since I was about 10 yrs old without anyone knowing anything about it. Without being diagnosed, that is. Yes, I had been thought of as weird and even retarded by my peers, mostly because of social anxiety and being an extreme introvert that were a result of or in addition to the schizophrenia. But my sanity hung on the fact that I was creative and could physically exercise to the point of exhaustion. I think that exercise (running) was the most potent antipsychotic I have ever experienced, probably due to the release of endorphins and the subjugation of ongoing anxiety for a few hours. The hallucinations never really bothered me because I couldn’t remember being without them. Nevertheless, once doctors knew of the hallucinations, that became their excuse for medicating the hell out of me. And subsequently robbing me of my creativity and the ability to exercise. You can see where this is going.
For one thing there was exercise equipment in the hospitals I began to frequent (after starting on antipsychotics, of course.) but I could not use it without a doctor’s prescription, which was never forthcoming. I guess they didn’t put much stock in exercise. It can’t be patented and marketed and sold as a pharmaceutical. Once I began taking Zyprexa, the option was moot anyway, because I gained so much weight there was no possible way to run anymore.
Although I had schizophrenia, as I said, for many years before diagnosis and treatment, I was always able to read voraciously, retain what I had read, and use that as grist for the mill of creativity. Once I started taking mood stabilizers (which, btw, never stabilized my mood) like Lithium, Depakote, and Tegretol, I began to REALLY suffer mentally. Yes, I could tolerate hallucinations, but what I found intolerable was the side effect of being unable to be intellectually stimulated. I was laid low. I could no longer read and understand the combination of words. I couldn’t sit through a movie because I could no longer process the sensory input — what I saw and heard became separate entities rather than combining seamlessly into a meaningful whole. It was a frightening, assaultive experience. Even music ceased to be soothing. All I wanted to do, and practically all I DID do was to lie in bed just trying to think one clear thought. It couldn’t be done.
After the antidepressant and mood stabilizer failure, ECT was tried. Again, that only made things worse. Then came antipsychotics. The first one I took, Trilafon, was a nightmare. Kind of like what you said, Pam — I then had an inability to tell dreams from reality. The scary kind of hallucinations started, like seeing a gargoyle when I looked in the mirror. And the parade of multiple antipsychotics drifted ineffectually past the window of my consciousness. Finally, when I was given Zyprexa, I “awakened.” Would I have needed awakening if I had never started taking these medications in the first place? I had my doubts. But on Zyprexa, I could read again. I could tolerate movies. I could write creatively. But the weight gain that started with Lithium began to really pile on with Zyrpexa. My weight doubled within a few months. I had always been extremely weight and diet-conscious. With Zyprexa came mind-numbing sedation and a tremendous 24×7 appetite. So I was eating and sleeping, but I was also reading and writing.
Talk about the horns of a dilemma — I could take the medication and regain my ability to think and create but be a slave to the fork, spoon and pillow, or I could stop taking medication and keep my appetite and weight within normal limits and be insane. What I’m wondering now is whether any of this would have been a problem if I had never taken the medications to begin with. I became much more insane after being medicated and stopping the medication. To my way of thinking, medication had stopped the positive symptoms but had made me especially prone to relapse every time I tried to ease back on it. And the hallucinations had never been much of a problem — not nearly the problem of weight gain and intellectual poverty. Zyprexa did at least give me back a portion of my mind. Medication giveth and medication taketh away; blessed be thy name pharmaceuticals.
SInce then, I have tried just about ever atypical on the market, with the exception of Invega, hoping to find the “right” medicaiton. They were all promising at first, but each with an array of intolerable side effects. Anxiety. Hypoglygcemia. Hypothyroidism. Akathisia. Pruritis. Mania. Severe insomnia. And for a long time, I could return (somewhat relieved) to Zyprexa and what had become my standard of recovery — stabilization and the ability to think and sleep again.
Now, however, I refuse to take the previous 40mg of Zyprexa. My psychiatrist seems to believe the higher the dose, the more effective the medication. I have weaned myself down to 2.5mg which is enough to keep me out of the hospital but apparently not enough to keep my appetite so revved up. It does not allow me to lose all this weight, no, but at least I am no longer gaining. I am writing again. And reading. The problem is, this dose of Zyprexa does not solve the problems of anxiety and insomnia, which are pure torture. So I take the minimum dose for several days, then double that for a couple of nights in order to sleep, then back again. I used to just stop taking the Zyprexa completely because the weight gain frustrated me so much. The stigma of mental illness is bad enough without the stigma of obesity. Schizophrenia is bad enough without metabolic syndrome or diabetes.
The real kicker, to me, is that yes I was having problems before I ever started on the psychiatric medication rollercoaster. I had some psychosis, depression, hypomania. I heard voices once in a while. I had a roster of impossible people renting space in my head. But I lived a close-to-normal existence from all outward appearances. I could hold down a stressful job. I managed to keep a marriage together. I was winning regional poetry contests in my spare time. I had my own home. But it was not until I began taking all of these medications that it all went to hell. And now, from what I’ve read and what I have experienced, my body can no longer tolerate being without the medications. Life is worse off of them now than on them. I have to take Zyprexa or go back to the hospital. I have to take it or I may end up living on the streets. I have to take it or risk killing myself. My doctor says oh, but the medication has SAVED you from these horrors. But am I where I am today — on SSDI, unable to work, a slave to my fat-bound body — because of antipsychotics and antidepressants? Or am I able to be independent, sane, and creative again because of them. Or both? Somehow, something doesn’t seem right.
I am trying to embed a video of Sherry West, in the early days of her telling about what happened, just after she was released from the hospital. (NOTE: the video was removed from the internet so I am posting a link to another youtube video which is still up. http://www.youtube.com/watch?v=DdkY1nmMxfU ) Before she got to refine her story about the two young “African American” boys who supposedly shot her infant. If it doesn’t load the first time around, I will get it done tomorrow, after I read up on how to do it. But once you see it, think about it. Does she sound sincere, or look it? Not to me. My first reaction after seeing it was, Oh no, this is just another page of the Susan Smith playbook, writ large…I hear, so to speak, Susan Smith speaking in her voice and I know she is lying about what happened just as I knew Susan Smith was lying the very first time I heard her talk about those “poor dead babies.”
Just to give you a way to see the Sherry West case differently, if you are inclined to think about such things, look at Pamela Meyers’ video on how to spot a liar, at TED lectures, which you can see at this link, http://www.youtube.com/watch?v=P_6vDLq64gE Trust me this is better and more helpful than any rapidfire weekly TV show about detectives, and it is only 18 minutes long. You really learn a lot.
Large picture I did at Yale Psychiatric Hospital, the second one.
The pictures below are actually only 2.5 by 3.5 inches and are artist trading cards. I drew many of them, especially when I did not feel like working on my larger drawings at the hospital.
In mid-February, after a week out of the hospital (and you can read about my hospitalization by scrolling down to the previous post, but, in brief, this had been at Hartford Hospital’s Institute of Living, during which I was kept in seclusion for the larger part of a four week stay and put multiple times, sometimes twice a day for many hours in 4-point restraints. Why? Why? Although I ONCE threw a chair, they told me it was for “not following directions.” To add insult to injury, every incident in which they restrained me was accompanied by three injections in the buttocks of Haldol, Ativan and Benadryl, despite my policy of passive, completely non-violent non-resistance.)
In any event, in mid-February, after I had spent just a week at home, I became acutely psychotic again, and in consultation with the only doctor I trust, a friend drove me to Yale New Haven Hospital’s emergency department. There, after a very long and arduous wait — alas, I cannot say much that is good about Yale’s ED. It felt like the psych/alcohol patients – and there were no discriminations made between the drunks and anyone else — were lined up on their beds in the hallway like buses at a terminal for what felt like “miles.” In fact at one point there was probably a line 15 gurneys long snaking around the corner until I could not see the end.
I was there for two and a half days, maybe longer, I do not recall. In fact, I remember nothing about my ED stay after I was finally “admitted” to the actual psych portion of the ED, as opposed to the hallway. I believe I was finally given medications, but also that I was no longer permitted access to my artist crayons, which meant that I only wanted to sleep and likely did until I was admitted to the Yale Psychiatric Hospital, a street or two away.
To say that my experience at YPH was an order of magnitude better than it had been at the IOL or even at Natchaug Hospital is truly not to give YPH enough credit. I scarcely want to mention the other two hospitals in the same sentence, that is how different Yale is and I say that even though I once considered Natchaug my “gold standard.” No longer, no longer. I think Natchaug was decent once, but only because of the civilizing and humanizing effects that the director of nursing, Sharon Hinton, APRN, had on the hospital. Once she left, the whole place went to pot, as evidenced by my experience during the last two stays, which went progressively from bad to terrible without her there…literally without her protection I was brutalized by a dehumanizing medical staff that had been left to do whatever it wanted to on its own, to hell with the consequences to the patients.
Be that as it may, and we know that the Institute was never humane, Yale took me completely by surprise. I was hard to surprise, and hard to convince that they were for real in their gentleness and kindness, let alone in their determination to treat me and everyone there with respect and dignity. I was certain that they would prove me right, that SOMEONE would be put into restraints, that someone would be violent enough to push their buttons and get 4-pointed. But it never happened, not in the entire three weeks I was there. Not even when a patient threw a punch or a push. Not even when a patient screamed bloody murder or used foul language. Nothing that earned me or anyone else seclusion or restraints elsewhere even came close to pushing the staff’s anger buttons at Yale. Instead, they persisted in using persuasion and gentleness and kindness…and if anyone lost it, if anyone became angry and could not keep it together, so far as I could tell, that staff member took themselves away from the situation to cool down, and did not take it out on the patient.
The most amazing things happened. No one forced me to do anything. Not even to take medication. I agreed to take it, after some discussion with the doctor and social worker…but when I evinced some doubt about the side effects, instead of pooh-poohing them as the doctor had at the Institute, Dr Milstein agreed with me, saying that the Zyprexa definitely increased appetite, and that it was not imaginary or something that was in my control, the way Dr Banerjee did at IOL. Instead, he and the other team members not only agreed to help me control what I ate, but went out of their way – I believe they actually went “Stop and Shopping” – to provide me with my own private supply of raw vegetable snacks in the staff refrigerator to eat at any time of the day…just so I wouldn’t have to be tempted by the hospital snacks of Doritos etc.
Dr Milstein asked me not to worry about what they did or did not do “extra” for me, and I tried not to. But when two large bottles of brand name Diet Coke kept appearing for me every day, and when the resident was sent to buy me batteries for my personal pencil sharpener (with a grinder not a blade), just so I could continue to do my artwork and not rely on the staff to sharpen my pencils in the back, well, I knew 1) they were truly watching out for me and treating me with TLC, or what certainly felt like extraordinary care, and 2) they were in fact spending “extra” money, if not indeed their own money just to supply these special needs…All of which – or NONE of which would have mattered at any other hospital or to any other staff. If I had no pencil sharpener, who would care? If I had to eat hospital food, who gave a damn? Dr Banerjee basically said it was MY fault and only my fault if I gained weight on Zyprexa, that none of his other patients, the good ones, ever did. But at Yale, all these matters were important to me, and so they were important to Dr Milstein to to Chris Simpson the social worker and to the other team members. Not just as a matter of words, but to be taken care of so I could both take the Zyprexa and do art.
Just as important, Dr Milstein took at least a half hour every single day, and I think sometimes it was more than that, simply to talk with me and listen to what I had to say. Even if it was only to rant about how badly I had been treated at the IOL. He repeatedly told me that he just wanted me to learn to trust again, to believe that not everyone was against me or would hurt me…And if I did not learn that precisely, I did eventually come to believe that the staff at Yale were trustworthy and kind and meant what they said about their NO restraints and NO seclusion policy, for everyone. I may had still had frissons whenever someone screamed or threw a fit, panicking, believing that 4-point restraints were finally going to be resorted to. PTSD is not that easily overcome after all. But I grew more trusting, and by the time of discharge, I was able to thank them all for everything, to know that they had gone out of their way for me, and not feel too guilty.
I did a fair amount of art while I was at Yale Psychiatric Hospital. I will post more in the coming days.
This is the drawing I finally finished that I did at the horrible torture chamber of the Institute of Living. There are all sorts of hidden things in it that you must rotate it to see fully…
Hi Everyone, Sorry to worry Lady Quixote and anyone else. I was in Yale New Haven Psychiatric Hospital for last several weeks. A much better stay by far of which I have much to say. But I am recuperating for the next few days as I just got home a couple of days ago. Forgive me for being so out of touch, but even making a long distance phone call was nearly impossible from there…Luckily, the staff and doctor treated me and everyone with immense kindness, gentleness and dignity and respect, so I got what I needed, which was some weeks of healing. Praise whatever force of the universe you believe in for that! More to come as soon as I am able to write more and many thanks for all your concern and your patience.
A limited edition series of CREATIVE MARK fine blue squirrel hair brushes! For centuries, natural blue squirrel hair has been one of the most cherished hairs for making high quality artists’ paint brushes. This traditional hair is extremely soft and highly absorbent, and offers several advantages over modern…
Pros: Fails To Glide, Rough, Stiff, Fails To Hold A Point
Cons: Poor Quality
Best Uses: Maybe Not Even For Glue, Maybe For Glue
Describe Yourself: Artist
Primary use: Personal
Was this a gift?: No
As an artist I need good brushes for all my work, and I invest in them, so when I saw these, I thought it would be a good thing to try them out. Unfortunately they were definitely nothing like the packaging asserts. Not at all. All I can tell you is that you have to say NOT to every single promise, including believing that these are even made of natural blue squirrel hair. NOT “soft and absorbent, hold lots of color.” NOT “handmade” NOT “round shape with fine point”. The tips are waxed into a pointed shape and you have to literally break off the coating to use them at all, but then you have a brush without any shape whatsoever, never mind a fine point. The brushes are quite literally worse than the cheapest department store brand. DO NOT BUY THEM. You will be wasting your time and anything else you expend on them. Jerry’s sells VERY good brushes, but these are not they.
I rest my case…
Tags: Unusable, After one use, Picture of Product
proof that these are Creative Mark brushes
Tags: Picture of Product
I wrote this review at Jerry’s site, but I wanted to add since I did write it, that the packaging pretends that these brushes are, and I quote, “entirely handmade” — the brush head is “hand-shaped and tied” and yadda yadda yadda.. But how can this be? Do they really expect us to believe that the metal ferrules were individually metal-worked? And the wooden lacquered handles, that is, painted with shiny paint, were individually painted and for that matter carved by hand? NOT! NOT! NOT! I do not for one second believe any of it and it bugs me that they think that they can get away with it. These brushes were NOT entirely hand-made, that is just plain masculine cow flops! I wouldn’t even give a hoot about the lies, if the brushes were decent but the idea that they could call this set worth nearly $70 or so, for 6 brushes, and then pretend to drastically mark it down for a once in a lifetime CHristmas sale just burns me. They are and always were crap. And they knew it. They know it now. I don’t get it. Why are people so dishonest. Wouldn’t they rather put out a decent product for a decent price and have some pride in what they make? People would buy it, then, and not complain.
But no, they would rather CHEAT people, once, but a lot of people. Once. Than have a limited number of repeat customers who were loyal to a good and trustworthy manufacturer. Oh, I will get off my soapbox but this sort of thing just disgusts me.
We are what we do. As a society we are what we teach our children to do. And we are no better than what we allow to happen by our inaction, if we don’t act to stop it. Our gun laws permit, nay, they encourage gun use by everyone, they enthusiastically promote gun ownership and usage, and they turn a blind eye to gun ownership and usage by those who should never lay their hands on a toy gun, much less a loaded one.
Guns kill. They are not decorative or ornamental items. They are not collectors items. So let’s not fool ourselves. It may take a human agent to pull the trigger, but it is the bullet from a gun that kills. And get this straight: when a gun kills 20 little kids, it matters not whether the slugs come from a sig sauer, a glock, a .22. or a Saturday night special, what kills is a gun that does the only job it was designed to do.
When it comes right down to it, it is far too easy to kill someone when you have a gun, any gun: if you push or punch someone because you are angry, it is likely that he or she will be bruised, but they will live. It is only when there is a gun attached to your fingers that lethality comes attached as well. GUNS KILL PEOPLE. People using GUNS KILL PEOPLE, but people without guns do not so frequently kill people.
Let’s face it, Adam Lanza would have found it extraordinarily difficult to have murdered 20 children and 8 adults in less than an hour without his two handguns. The guns literally empowered him to do what he did. Without his guns, he would likely not even have attempted such a deed. Guns made him a god to grant and take away life, and in a moment of passion, he decreed that 28 people would lose theirs. Now, I don’t even believe doctors should be playing god, so I am horrified that all it takes is a gun, and Everyman has the power to do what only god should be in charge of.
Check out the website created after the Newtown, Connecticut, kindergarten shooting this afternoon, http://wearebetterthanthis.org, sponsored by the Brady Campaign to Prevent Gun Violence. God bless them, I fully support the Brady Campaign. However, I am not sure we — whoever we are — are truly better than any “this”…Who are we anyway, and what proves that we are actually better than we witness happening around us?
The stats are ominous and more than distressing. And they speak volumes about whether perhaps it’s just a big fantasy, our being any better than the murderers among us.
For one thing, you should know that while there are 34, 589 hardware stores in the United States, there are more than 129,817 licensed firearms dealers as of Aug 2012 . Of those, 51,438 are retail gun stores, 7,356 are pawn shops and 61,562 are collectors. The rest are manufacturers and importers of firearms and destructive devices.
There are also 80,000 ice cream parlors. Ice cream does 18 billion in sales a year, which isn’t bad considering an average ice cream cone costs only between $2 and $4. An average Glock 17, “America’s favorite gun,” costs around $500.00 You do the math and then tell me how easy it will be to convince gun dealers to change their ways…
But right now, why should they bother? Guns are great business! In 2010 the National Instant Criminal Background Check System (NICS) ran 16,454,951 background checks for firearms purchases. Only a small number of these purchases (78,211 or 0.48 percent) were denied. During Obama’s first term, and well before it ended, more than 50 million background checks had been run by the NCIS. This was a bonanza for the gun industry compared to the same 3.5 year period under George W Bush, when “only” 28 million such checks — background checks are an index of the demand market — were run. So clearly, if guns in the hands of the wrong people kill, chances are that more guns had to be getting in the hands of more wrong people than ever during the last four years…many many more.
Note that it doesn’t matter how many guns are purchased at one time, there is only one background check per purchase. After that, what you do with the guns and how many you have purchased at one time, is your business and yours alone… Oh and lest you think the so-called “mentally ill” would be screened out by the NCIS background check, think again. Being “adjudicated mentally ill” and barred from buying a gun is not at all the same thing as simply seeing a shrink or even being hospitalized in a general hospital, with or without your consent for 15 days.
I have been kept in a hospital against my will for even longer, but I have not been formally adjudicated mentally incompetent, or if I ever was, now that I am OUT of the hospital, I am no longer considered non compos mentis, and I could buy myself any gun I wanted to.
Frankly, I think that is only right. Why should some angry redneck be able to buy himself a Glock 17 semi-automatic handgun and I, peaceable and very, very unlikely even to pick it up, let alone use it, could not buy a sweet little .22? Furthermore, I would be far more likely to use it ON MYSELF not on others…
This last is a notable case in point, because unbelievably, suicide far exceeded homicide as the cause of gun fatalities at least in 2005. In 2005, 5.75/100,000 people committed suicide with a firearm, whereas “only” 3.43/100,000 people caused firearms homicides in that same year. Since in 2012, the suicide rate has hugely increased, probably due to PTSD in returning veterans, this ratio likely has only increased.
Approximately 34 persons are felled by guns each and every day in the US. According to the FBI Uniform Crime Report, between 2006 and 2010, 47,856 people were slain by gunfire in the U.S., more than twice as many as were killed by any and all other means.
Whether or not the suicidal mentally ill should have access to guns – and just how to prevent it, just how to define who is mentally ill would be a huge problem — I see a bigger problem with an angry man of any stripe being able to purchase a handgun. Anger is a big spur to impulsive behavior and impulsivity and guns decidedly do not mix.
So I ask you: How can we be better than Friday afternoon’s Glockencatastrophe if we buy or permit/encourage the purchase of so many more handguns than ever? We are a gun culture, we worship guns, we hav a national love affair with guns. What do we expect?
You know, one of the first rules of writing fiction is, if you “plant” a gun in the early scenes in a story, it must go off by the end…Similarly, if we have and are a gun culture, who are we not to expect to be a culture of shootings? We have the guns, how can we expect people, both good and bad, not to use them?
During the Newtown shooting, from what I gather, the shooter killed himself after he shot all the 28 other victims…All the high tech and paramilitary heavy weaponry with which the police have equipped themselves did zilch in the end to prevent mass murder. No, 20 small children and 8 adults were quickly and savagely murdered, a horrific act accomplished largely so it appears with two handguns, a plastic and metal glock and a sig sauer. The shooter supposedly had access to a Bushmaster combat rifle it is not clear that he used it for the killings.
Whatever is the case, things will become clearer in the coming days as the police reveal more information.
Perhaps I should be softer and sadder right now, perhaps I should not bring up things like slugs and guns and such at this moment. Forgive me for not wailing and beating my breast or crying but many more are doing that tonight elsewhere, so I am just going to save my breath for rage on behalf of those poor murdered children and the eight others…Any more tears added to that ocean would just be wasted salt and water.
One of the terrible consequences of the APA’s DSM is the Multiple Personality Mayhem that resulted from that fad diagnosis of the late 80s and 90s. I was hospitalized many times in those years, and I was appalled even then at how this once extraordinarily rare diagnosis was suddenly “popping out of the woodworks.” Somehow, multiples, with their putative history of extreme childhood sexual torture, were everywhere. At any time on a psychiatric unit of 18-20 beds, you might see 4 people supposedly suffering from MPD. It was absurd, but try and point that out to the professionals! No, they were much too busy creating very sick individuals out of the whole cloth of their own — the psychiatrists’– minds!
Even at the time I felt very frightened by what was happening, as I understood how difficult it was going to be, when it was all over, for such patients to come to grips with the fact that their disorders were invented for them by the doctors who wanted to have their time in the limelight. Now that the fad is over, where have all the multiples gone? Have all of them been converted to DID — that is, are they still being lied to? or has anyone decided to be honest with them and admit that the Dx was bogus all along, that they never did have MPD or any other such disorder. That their so called multiple personalities were suggested to them by the therapists and invented for them ditto.
It was a horrendous situation, and one that I do not believe anyone has dealt with completely honestly or fully to this day…Of course not. When did you ever meet a doctor, much less a psychiatrist willing to admit he or she made a terrible mistake, or say, I am sorry, I will make amends. Hah. That’ll be the day.