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This is in reply to a couple of comments on my last entry: To Paula I would say, Yes, no one should medicate a person who is merely different or eccentric yet self-sufficient and causing nobody any harm. And likewise, I think we can mostly all agree that the obviously violent person needs measures taken to ensure that her violent tendencies are quelled. But what about someone in a middle position; say someone who can't really take care of himself, so is hospitalized constantly or is in and out of prison for minor offenses like trespassing and panhandling and when not is on the streets or relying on shelters and emergency care centers in various cities...In short, because he won't take the medication that would stabilize him and enable him to start living a better life, he is costing society an enormous amount of money and resources...
Does the state, impersonal entity that it is, have the right then to say, We're not going to throw our money away like this anymore, not on things that don't work. We know this med works, and he gets better and gets out of the shelter and into a group home and gets a part time job and goes to school...So now we are going to forcibly medicate him to get him back to the point where he is lucid and cares about himself and what he does! The state doesn't have to have kindness as a motive; the state is allowed to have pure economics asa motive. But isn't in fact this a kinder way to treat him, than simply to let him be out of respect for his so-called rights?
Just a thought meant to provoke argument, not hysteria...And if anyone out there is anti-psychiatry, I beg you, DO NOT reply. You are not welcome at this site.
To Yaya I want to say, Yes, I can imagine how hard it must be for you to keep on giving and supporting and being there...I do not know your situation at all, nor your daughters, so naturally I can't comment specifically. But apparently I make others the target of my delusional rage when psychotic too, and yet I cannot remember doing so, or even what I was feeling nor the feelings themselves. I have to be told I said such and such a thing, or did this or that, or accused so and so of yet another foul deed...I have to be reminded of everything, because I do not remember anything of my psychosis afterwards. It is amazing that I could write the book that I did, given how much I lose each time...I only remember things from a distance, watching me do things, not how I felt in terms of feeling the same feelings...But that is neither here nor there, except to say that I have probably been like your daughter is to you, to my twin sister, who also has had to shoulder the burden of my care when no one else could or would. And she could empathize heartily. She has even been my conservator and signed for me to have ECT. And I have been court ordered to take Zyprexa while in the hospital...so it is not a long hop from there to out patient commitment, in my experience...And I still would run run run from it.
Because they still think they know more than I do, more about how I feel than I do, more about what I can tolerate than I do, more about what I am willing to tolerate than I do...and they want a solution NOW, when in fact there isn't any, not a perfect one, and so it takes tinkering with a little of this and a little of that, and in an outpatient commitment setting there's no tinkering, it's Take this pill and swallow it!
Argh...Any more thoughts or opinions?
I know this is a controversial subject -- out-patient commitment or whatever name it goes by in your neck of the woods -- and that people are often very passionately for or against it. I want only to write down some thoughts about it, some observations and questions, and ask for opinions...I have not made up my mind about it yet, if indeed I decide there is a hard and fast rule to be made about the subject.
The argument against: Out-patient commitment, by whatever softer eumphemism the powers that be want to use, seems to me to be the last resort of a system that does not want to take care of its mentally ill...ie it will not provide hospitals and the staff to work there and care for those who need them, so it invents a procedure whereby a person can be legally forced to take medication, be chemically strait-jacketed and kept quiet, just so society is satisfied he or she will be no trouble to it and can safely be ignored. Of course this assumes that the medication chosen and forced upon the person/victim is 1) appropriate (ie that the diagnosis is correct) 2) acceptable (ie without unbearable side effects, and I mean unbearable) and 3) effective (that it helps the person him or herself actually FEEL better as well as do better...not simply behave more calmly or quietly, while feeling. horrible). None of these three things can be assumed, naturally. Doctors make misdiagnoses ALL the time, and in fact most of us have gone through several different diagnoses before getting to the final one, by virtue of having been seen by different doctors with different opinions at different times or stages of our illnesses. Need I add to this the number of medications most of us have tried before arriving at the one or many that finally help without causing intolerable side effects? I can only imagine how horrible it would be to be forced by some visiting goon squad to swallow pills each day that I knew would make me a zombie or cause some other terrible side effect simply to satisfy the requirements of a state-enforced out-patient commitment order, the alternative to which is hospitalization... But of course, what does this mean? Not a helpful hospitalization, no, because those beds are no longer to be had. Only another bed in a locked unit where medication can be forced on you anyway...So you're damned if you do and damned if you don't...And all because the country doesn't give a damn about people it would rather simply throw away. There's another argument too, which is: what if the person doesn't have any illness whatsoever, is simply "different" and doesn't need medication at all? Well, that's a situation I don't even want to think about....though it's one many anti-psychiatry people believe very important.
That's one argument. Now, for those of you who are more likely to be parents of those suffering from these illnesses, though not all of you, an argument for the use of out-patient commitment procedures to ensure that someone takes his or her medications: Say your adult child has schizophrenia and has been homeless and a victim of assaults and abuse, as well as at times abusive and assaultive due to paranoid thinking, and has been repeatedly taken off the streets and hospitalized, whereupon she becomes lucid and quite pleasant, says she wants to turn a corner, stop being homeless, make a change...And is discharged to a halfway house or group home, only to stop taking her medication and end up homeless and paranoid again...and the cycle goes on and on. I'm sure this sort of pattern in multitudinous variations will seem familiar to many people. But if that adult child could be monitored, by virtue of a state or probate court order, so that she had to take her medication even as an outpatient, maybe she would not end up back on the streets, but would in fact turn that corner, get a job and become the productive person she says she wants to be...Would that not be doing her a favor in the end? Forcing her into treatment in order to help her become who she wants to be? Isn't that more humane than allowing her the human rights, so called, to decompensate and live in the gutter?
I do not know how to decide....If I were the person in the second instance, I certainly would think I'd prefer to be medicated. But what if the medication chosen were Haldol? What then? And what if the medication forced on me were Zyprexa??? Would I be so happy to be forced to take medication under those circumstances? So you see, it isn't so easy to simply say: Medicate them! Unfortunately, everyone wwants a blanket policy in this country, something easy to apply in all cases, so we don'[t have to think about individuals and what might be best for each person under consideration. God forbid we spend our taxpayers' money considering them, when we have a war to fight and million-dollar bombs to drop, KABOOM! SMASH! CRASH! There, we just blew up a billion dollars worth of minerals and killed several people and destroyed who knows how much in the process, but it must have been worth more than taking care of the mentally ill, because we did it, right? And we wouldn't do it if it weren't right, right?
Yeah, right. Anyhow, I've laid out two scenarios, and do not claim to have answers...Am still only asking questions. Any comments will be read and welcomed to the discussion.
The body is something I don't deal with easily or casually. It isn't so much that I don't like mine -- I don't much care about mine in fact. So much as that I don't like the very idea of bodies, of having one or of having to take care of one. Seeing the doctor yesterday and having had a biopsy taken from an intimate place inside me only brought this home to me the more...
While it is true that I care about my size, this is only insofar as I do not wish to take up space and the less the better. I would be happiest not to be seen at all, to be completely inconspicuous, to be one with the wind, as I so often put it in the past. But given that I can't, so it seems, I will go with simply taking up as little room as I can. This need is so strong in me, though, that I suffer terribly whenever I feel that I have put on weight and therefore take up more than "my share," that is to say, very little space in the world...which is how I feel this particular minute. This feeling may not be due to actually having gained weight -- I do not know -- so much as a reaction to the intimate trespasses committed upon me in the last 48 hours. As careful as he was, the GYN doc, I still felt violated, doubly so because I had to squelch the feeling and pretend otherwise, because to admit to feeling raped by a biopsy would be to present too much trouble for other people...and share feelings they wouldn't understand or know how to deal with...So you have to preserve them from your dismay by pretending it was a breeze. Well, pain-wise it was. I felt very little I'd call physical pain, but mental anguish? Emotional distress? Well, that's another story, and to that one is not allowed to allude.
I hate bodies, I hate having a body. But I also don't care about the body I have. I don't care if it is clean or dirty, I don't care whether I wash its hair or brush its teeth or not. I don't care if it smells or if it sleeps in dirty clothes for nights on end....Why should I? I, I in my essence, have nothing to do with it. You say, you are a body but have a soul? Well, I say, I have a body but am a soul...And I choose to ignore the temporary "vessel" which word already makes it sound more precious than it is...The only reason that I might care about "my" body is insofar as it is the vehicle for life. I am well aware that I, in my essence and as a soul, would not exist without it. So I need it in order to be conscious, in order to live. And as I do not want to die, not yet, not now so I need to treat it well enough to stay alive as long as possible, whether I like it or not.
But dirt doesn't make a body unwell, so I don't need to shower if I don't want to, and I don't...The water-needles bother me and I don't have the energy to get undressed or the wherewithal to wash what it seems so unecessary to have clean, and the excuses pile up and up. I simply don't feel like showering and don't want to... And my teeth don't bother me, so if I don't brush them very often, who cares? I don't, and they are mine to brush or not! If they fall out, I'll get false ones, I suppose, though I admit I don't want that to happen. I just can't get myself to remember to brush daily, and when I do remember, it seems like it takes too much energy...
Am I sharing TMI? Or do others feel similarly? Do other people out there with schizophrenia feel as I do about washing and taking care of their...bodies? It isn't laziness or sloth I don't think, though it must look that way. It's -- well, I think now it's a lack of connection to one's physical self, a lack of feeling a stake in it, not understanding in any visceral way that I depend on it and it on me, that we are in this together and need each other, that we are one and the same...Yes, somehow, though I know the words, that experience of oneness with my body escapes me entirely. So I can ignore the same body I occupy as if it belongs to someone or something else, because it doesn't really feel like me or an integral aspect of my being.
I think in fact that this is part of the reason my pain threshold is so high: I am in some real sense not in my own body, I'm divorced from feeling it as me. When my leg was burned so badly and they debrided it daily, ordinarily something that is extraordinarily painful, I felt nothing, no pain, just a kind of curiosity as to what procedure they used to accomplish the task...The nurses were really surprised, because they dreaded doing it, fearing that they were going to cause me terrible pain...and lo and behold it was nothing to me...I still remember that...Yes, I do feel some pain -- I feel migraines, and my R shoulder and arm chronically hurt, but only as a shoulder and arm, not as me...But I didn't feel anything from the biopsy, except the sense of violation and even when I give myself a shot for a migraine, I feel nothing...
Well, I've said either a lot of nothing, or too much here, dunno which, but feel free to comment, if you have anything to add. Sorry this is so inarticulate and lacking in eloquence, but it was more important for me to talk about this now, than to write a polished essay on something more elevated. Forgive me if you expect more of me! BD
Well, Iowa was something! We flew first to Detroit and then to Omaha, Nebraska, where we rented a car and drove to Sioux City in Iowa. Before we left, I'd done some research and learned a bit about the area we were going to. I knew that we'd be driving along the Missouri River and the geological feature of western Iowa known as the Loess Hills, loess being a kind of wind-deposited glacial soil that built up following the last ice age, mostly east of the river (so I gather, due to the prevailing westerly winds). I looked and looked at pictures of these hills, both close-ups of outcrops and from far off, and so when we saw them from the highway, I recognized them immediately. It was quite thrilling. I have studied a bit of geology for a while now, but since I know no one to take me out and actually show me the sorts of things I study in pictures, it was the first time I'd actually matched what I'd learned in a book or on the internet to the real thing. Likewise I wanted to do the same with the Loess Hill wildflowers, but we never stopped long enough for me to see any up close...Too bad as I am quite familiar with flowers and would have found that delightful. I was able to do something like that in Arizona, when I went botanizing in Tucson with my friend Rose, but alas, there was no chance for that in Sioux City or Omaha....
Anyhow, in Sioux City, we did our CME lecture (CME=Continuing Medical Education, a course presumably for nurses and other providers of mental health care as well as students of various sorts) for around 300 people, then had lunch in a hall that was packed with the same 300 people, followed by a workshop, which almost the same entire group of 300 people came back for (despite there being two others to choose from) and a booksigning. Then, without notice, we were asked to do a TV interview...Well, at first I was resistant, and Lynnie was going to do it, but she balked, freezing up and getting angry at them for springing this on us at the last minute. So then I said I would do it after all. And instead of getting nervous I just talked to them without Lynnie, deciding that they could find something in what I said to cut and paste into a piece they'd either use or not. I didn't care what I looked or sounded like. I figured, what did it matter how well I spoke or how good I looked? I was tired and it no longer mattered to me...so I relaxed and just conversed, casually, as if the TV people were friends. I don't know what the piece they ran came out like, but iin the end, I don't really care...I'm just glad I could do it, and without Lynnie, could actually do it by myself so Lynnie didn't have to...It felt good to be able to "rescue" her for a change, rather than have her save me from having to do it. Finally, after the TV crew left, we were taken across town to do a radio show, and then we were free to drive back to Omaha. We flew home the next morning and I've been recuperating ever since. Now there is one more trip to go -- NAMI in DC at the end of June, and then we are done till October. Finally, I'll be free to write and read and not worry about when I next will have to pack and go away again....
Sorry for that boring synopsis of our trip. I promise to write something more interesting next time, but I just wanted to update people on the last of our travels. Otherwise, I am doing pretty well. I had an endometrial biopsy done yesterday, which will most likely be fine, but was taken "just in case." And so that is over with. And the music is greatly diminished in general. When it does play, I tend to drown it out with input from a walkman or Ipod, either one of which generally does the trick. Have been reading Michael Pollan's new book, The Omnivore's Dilemma, which is even more positively irritative to the cerebral hemisheres than his other one, The Botany of Desire, which has long been one of my favorite books...If anyone feels like discussing this newest one, do drop me a line, or comment here. I could write a dozen pages just about corn at this point...and if you have read Pollan's book or his blog or any of his recent writings, you know what I am talking about...If not, I recommend looking him up. He's got a lot to say that is relevant to food, health, the environment and energy use that I think it behooves us all to think more about...
This is a link to the MP3 version of the radio documentary featuring Lynnie and me and other siblings with mental illness (which was was rebroadcast this morning) that I wrote about a few posts back. It may be of interest to any who are family members of those with schizophrenia or another major mental illness. Warning: with respect to our story, there are some inaccuracies, a couple of which are substantial -- eg I did NOT weigh "under 90 pounds" I weighed exactly 100lbs and there is a big difference! And others, none of which should have occurred, since the documentarian should have had the proper information on tape. In any event, none of the errors detract from the truth of the story per se, but be aware that a few of the facts as presented are not strictly factual.
I don't think I've posted this link before, but if I have, forgive me. (My memory has not been the same since ECT...) It should take you to WHYY's Marty Moss Coane's RADIO TIMES from Philadelphia and the show she did with me and Lynnie on May 5th.
Well, I'm on my way to bed early tonight because tomorrow we fly from here in Connecticut to Iowa to do a Continuing Medical Education unit in Sioux City on Wednesday am and pm. We are also scheduled to do a radio interview there around 3pm I believe, but don't know if we'll make it to that on time as it will be a push, getting from the afternoon CME to the radio station. Anyhow, I'm not too scared about the flights, after having flown to Arizona a few weeks ago and survived. And I'm no longer scared at all of speaking to a new crowd, though this is the first time we have to do two sessions in one day, and two different ones at that...But we have our usual presentation and then we worked up a powerpoint presentation for the workshop section so we should be in good shape...I hope.
Anyhow, I want to get this done and over with, and then finish with NAMI national in DC at the end of June, and have my life back! I look forward to trying to put together a poetry manuscript and perhaps looking for a publisher for that, if I have the nerve and the energy...I certainly have enough poems. And I want to get back to writing regularly... something, I dunno what. But really anything would do, so long as it is a project I can sink my teeth into. Lynnie wants to write a sequel to Divided Minds, but I am not sure if that's the best thing to do right now. It feels a little early....and it's not like it's so well known that a sequel would be clamored for. It's almost like we'd have to write a completely different book and try again....But I am not sure I want to do that either.
Well, I've taken my Xyrem and am feeling sleepy, so I'd better quit while I can still write. I'll write again soon, once I'm home again.
The Principles of Being and Non-Being are One and the Same
The great Heisenberg* of small tenuous uncertainty
that what we know we don’t of time and place, what
we, waves, wrens or worms, the sleepy sucking currents
of deep ocean are is distorted by the social lies of light
that plays with everything like a child’s puppet
theatre making mock of all
that is ephemeral or enfeebled.
Yet what reflects in each thing of our longing
that we might see its face in day, midnight’s
candled moon and sparking stars
change into hidden language, like the deaf’s
manual music lacking melody, the voice of the silent body,
change it utterly without our knowing, how what is at night
is not, nor even a shadow of what is under light.
Where was Heisenberg? Who or what was he, caught
within this same improbable masque,
the circus of the real where fire-eaters consume flame
more honestly than we our fries, our fish
under the gilded double bow.
Each unknown enthralled non-thing of our troubling
existence is silenced by the humble-most questions
of all: space and speed, place and journey,
face and the faces turned away--
Where were you?
Why were you not here when we needed you?
*Heisenberg's Uncertainty Principle states, essentially, that we cannot know the position AND the momentum of a given subatomic particle at the same time, in short that we can't know both where it is and how fast it's going, we can only know one or the other.
Right now in terms of antipsychotics I am taking the following: Geodon 160mg, Haldol 7.5mg, Abilify 5mg and Zyprexa 2.5mg...Plus a number of other drugs including Effexor at a very low dose (75mg), and the anticonvulsants, Lamictal (200mg) and Topomax (100mg). I also take drugs for narcolepsy and migraines but those above are the relevant ones for now. The esteemed Frau Doktor O believes that this regimen of tiny doses of several APs (except the main one Geodon) targets more symptoms yet causes fewer side effects than using one large dose of one drug and so far she seems to be right on target as I have very few side effects from any of these drugs, despite their number.
BUT the problem remains that the Zyprexa continues to cause weight gain unless I rigidly starve myself and none of the above completely erase the voices and music, not at those doses at any rate. It might be, as it was last year, that at 15mg to 20mg of Haldol, I wouldn't hear anything, but I also know that for the entire year I didn't/couldn't read a thing, spent all year doing nothing but watching Home and Garden television. I didn't understand what was wrong, really. I thought I was bored. I couldn't even pay attention to public broadcasting. I thought I'd lost interest in all the things that used to fascinate me, and I figured this was just one of those things that happened, that interest in them had died and had done so naturally...
So while Haldol doesn't seem to cause actively unpleasant side effects, like akathisia (at least the inderal I take as a beta blocker treats that okay) it does lead to more passively disagreeable ones...Like increased apathy and passivity and lack of interest and motivation...In short, negative symptoms! Now, one might say that these are "me" not the drug, that the drug simply is not treating them adequately and so they are being unmasked. But to that I'd say, And so why do I NOT have these problems once I go off this dosage of Haldol and change nothing, only add Zyprexa at the minuscule amount of 2.5mg? Oh, I know, the same person would say, well, the Zyprexa actively alleviated your negative symptoms! But we know that Haldol is known to cause a deadening feeling; many have complained about it, and in my case this deadening means that I can no longer read or feel any enthusiasm for anything. Zyprexa does add something, yes, but it adds this ON TOP of the relief I experience from just gettiing off the Haldol.
What does Zyprexa add? What Zyprexa adds is magical, to me; it adds vitality, it adds the lifelike quality to life that is missing otherwise. What otherwise seems a technicolor version of the real thing, ie a movie made of life, on Zyprexa becomes, well, the Real Thing, and it is amazing. I become real, I come to life and so does everything else in my environment. No wonder it all fascinates me! It's as if it is all brand new to me, because I've only seen the movie version until now; until Zyprexa everything was filtered through the movie screen effect, the Hollywood censor so to speak, so that life came out in a kiind of weird 2-D projection...I even explained it as All-Sensurround, cosmic history and life memories projected onto the walls of the Supermetal canister (which I may talk about in a very early post) such that life seemed real without it being anything more than an illusion. Technicolor can only satisfy as long as you don't realize there is something better...Once you've tasted 3-D life, well, Virginia, yes there is a Santa Claus and I'm heading to the North Pole to find him and taste Real Snow!
When I started taking Zyprexa, well, that subtle screen-like sensation interposed between me and reality was lifted and suddenly I saw and experienced things -- life! -- first hand, for the first time since I could remember. That was the real miracle of Zyprexa, the movie version became real. It is only now that I have found a way to explain it, one that I think does the miracle justice and also gives a hint as to the nature of its "miraculousness." Do any of you understand it better now? Or appreciate what "before" was like?