Wednesday, January 4, 2012
After reading this article, please go to my other blog at wagblog.wordpress.com for a post that will deal by the end of Jan 4th with how they used a chair like this on me at Connecticut's Manchester Hospital in the general psychiatric unit. I was not a forensic patient, I committed no crime, never have. I was simply there because of a diagnosis of schizophrenia. For the life of me I do not know, and frankly am horrified to so much as speculate, where they obtained such a chair; no one I talked to since who has worked in a psych unit has ever seen such a contraption anywhere on a regular psych service unit...But as I said, I am working on a post dealing with this, and it should be up by the end of tonight.
Thursday, October 20, 2011
Jill Bolte Taylor's stroke of insight | Video on TED.com
Tuesday, October 4, 2011
When Clozaril came along, the first atypical antipsychotic drug, I was one of the first Medicaid patients in CT to be put on it. Alas, I have to admit that I am unable to evaluate its efficacy in my case, because I experienced once again such side effects that despite 3 or 4 serious trials on it, I was relieved when my white cell count dropped so low that I was forced to stop taking it. I know that other people said I "did better" on clozapine, but they'd said that about Haldol and Thorazine and Prolixin yada yada yada when I'd suffered the agonies of hell on those. So whatever they thought, that it was worth it for me to suffer such side effects, meant little to me in the end. They were not in my body, and it never seemed to matter to them ("them" being largely the psychiatrist and various mental health "officials" supervising me) that I was in exquisite pain on any of the drugs so long as I took them.
As a result, when they told me that it was worth the side effects to continue taking the clozapine, I finally told the doctor I was seeing to "go soak your head." At which point, she summarily dumped me! Fine, fine. That wasn't exactly copacetic, as they used to say, but I got another and finally I was able to stop taking the drug when agranulocytosis seemed imminent. Then it was back to Prolixin for a few years, which was bad, but frankly not as agonizing as the Clozaril had been.
But what side effects did I have? Well, it turns out that I would have those same side effects some years later on Seroquel: after taking the drug at night I would within a half hour have unbearable feelings of impending doom, the sense that if I closed my eyes to sleep I would without a doubt die that very night. It sounds trivial but it was one of the most horrifying feelings I have ever had to deal with. Then I found I could not swallow my own saliva, which was copious and spilled out onto my pillow by the "pailful" -- when I did fall into that deathly sleep I was so terrorized by, I would wake with slimy sheets and pillowcase. Did I mention sedation all day long, and weight gain? No? Well, there were those as well. It isn't just Zyprexa that is guilty of causing obesity and diabetes. Long before I took Zyprexa I had already started to gain weight, and I believe that was because of taking Clozaril for so many trial runs for so many months.
But then, after waiting until 1996, Zyprexa, that miracle drug for me, that drug from hell as it turned out to be as well, came out and changed my life for good, and for ill. I loved it, and I still do. But I would never take it again. If you have not read about my journey with this medication scroll down to earlier posts and look for "Schizophrenia and My Conflict about Taking Medication" which tells the tale.
After Zyprexa came Seroquel, and then Risperdal which had all those side effects and then some, including sedation so extreme that a friend considered me nearly comatose. In fact, every time I agreed to another trial on it and I took it for longer than two weeks at any dose, even as little as a half milligram, I ended up catatonic. The last time led to a hospitalization so traumatic that was it for risperidone.
Have you guessed by now that I have tried most of the atypicals available in the U.S. if not all of them? I am now on Abilify and Geodon which I will tell you about at the end of this post, but first I need to give you the lowdown about how I did on 1) Saphris, 2) Fanapt and 3) Latuda.
Saphris was from the start one of the most deadening drugs I have ever taken. Yes, the voices were drugged up and deadened. But it seemed to exacerbate all possible negative symptoms I ever had. I simply had no drive to do a thing but watch television all day long, smoke and look out the window. I did nothing else, barely even bothered to eat. In fact, I am going to do something I rarely do here, which is to post a poem that I have not yet published, despite the fact that it might mean I cannot do so elsewhere in the future, because I wrote it about the experience of taking Saphris, and the dullness and negative symptoms it induced.
Fanapt? I scarcely recall why I did not like the drug, but I do know that I barely took it a week before i nixed it. I think I could tell it was making me eat too much, which was the kiss of death almost before I could see if it helped me . One of my biggest phobias now, after becoming obese on Zyprexa, is that I will never let that happen to me again. It was simply too hard to get the weight off again, and I will not repeat that struggle or go through what it took to do so. Not if I have any say in it, which I damn well intend to.
Then we have Latuda, of which I once sang praises. You should know that I have had second thoughts and changed my mind about this drug. Oh, it did stop the voices and such very quickly, but it too induced a kind of grayness to life, an indifference and colorlessness that was painful. I could do nothing, even if I wanted to. I felt like nothing interested me. The only difference between Latuda and Saphris was that on Latuda I understood what I was missing, I knew that I wanted to want more, whereas on Saphris I simply didn't feel like doing anything, and forgot that life could hold much more. The latter state was much worse, but luckily someone picked up on it, and the dangers it held, and I got off it before it became a pattern.
When I was in the hospital this past summer for 6 weeks I might have been ready for discharge earlier, had I been willing to take either Zyprexa or Latuda, but I refused, because I knew perfectly well that once discharged I would adamantly refuse to continue either drug,As I pointed out, what was the point of getting started on a drug only to cease taking it the minute I got out of the hospital? It made no sense, especially were I to leave below my baseline, with the assumption that thte drug, being administered on the outside, was what was going to help me recover from the on-going psychosis. It simply made no sense to get me started on a drug I would refuse to take.
Luckily the attending doctor, a very nice older woman from Rumania, got the point and even agreed with it, so though the stay was rough, largely because we had to deal with a lot of my reaction to the trauma I had experienced at two other hospitals the previous year, I was able to stay on Geodon and Abiify without adding another drug I wouldn't continue taking.
Now, as to those drugs, the combination of A and G: I consider them to be my "output" drugs, compared to Zyprexa, which was an "intake" drug. On Zyprexa I take in and attend to everything: reading, learning, and also food. I gobble everything down and retain it. I learn a great deal and I also become obese. On Abilify and Geodon, I do a lot, get a lot of work done, for they are my "output" drugs. I can control my appetite and do not feel as driven to eat. On this combination I write and write like mad, and I do art like there is no tomorrow. In fact, sometimes I cannot let go of my pen, but must write until my hand hurts...But taking in is of less importance. In fact, though, I have to force myself to read or eat and to read a book becomes a chore of the first order. This not good, but I have had to make the choice and it has been acceptable to me.
All my life I have not been productive, due to schizophrenia. I have been an unproductive, non-functioning citizen. Finally, I can produce art and writing, and I revel in it, even though due to the horrible financial strictures of Medicare, Social Security and Medicaid, and my own needs for housing, medical coverage, I am unable to get off any of them. This forces me and most disabled people to remain poor, essentially non-productive. Maybe I produce, but uselessly as I cannot earn a living. So I produce ina vacuum. I produce, but I give everything away. I donate my sculptures to good causes, not a bad thing, and I save my "flat" pieces until such a time as I may be able to sell them, or trade them for useful items I need for my art or apartment. What else can I do, since I cannot earn income? It is a terrible bind, once which President Obama wanted to repair, but will not be permitted to do, due to the politics of our time.
So, here is where I am now. I take Abilify with Geodon to temper the over-activating effects, the temper and irritability Abilify alone tends to induce, plus Lamictal, a mood stabilizer that I frankly use only to control what I've been told are temporal lobe seizures in the form of olfactory hallucinations; Topomax to reduce the frequency of migraines; Ritalin and Xyrem to treat narcolepsy, the second to increase delta sleep in order to reduce the need for the first. And Zoloft, to which I suspect I am addicted and need less for major depression than because I cannot get off it without rebound depression and suicidality..
All in all, these seem to work fairly well, however. If I have relapses, mostly I have to live with them, and wait for them to burn themselves out, because I won't take any other meds to stop them, and because increasing any of these drugs only adds side effects without actually helping the psychosis.
If my readers have any further questions, feel free to comment and ask them in your comment. I will reply personally or in another post.
TTFN (tata or good bye for now)
Sunday, June 19, 2011
I have long argued that "schizophrenia" from all my observations, close and rather not so, can hardly be called an illness. I believe it can only be termed a syndrome, as in a collection of similar, by far not, identical symptoms, but not a single, or singular illness with specific core signs and symptoms. The very fact that out of dozens of medications it remains a set of symptoms that is treated largely hit or miss, and by trial and error, a med that is a miracle for one person, being useless for another. Moreover, I have known dozens of people, many of them friends, who have been dx'd with this "illness" and every single of one of them was singular, "uniquely unique" and shared almost no symptom or trait or characteristic of the illness with anyone else.
Oh, sure, we may have been dx'd paranoid, some of us, but none was paranoid in the same way. One guy who believed he wrote a certain famous rock groups' music (a delusion) was certain that people were out to steal his music manuscripts, even though these looked to us like nonsense written on scraps of scratch paper. Not to him, to him they were pure gold and he was terrified...The "paranoid" delusion of another person with this same illness schizophrenia had to do with something entirely different and took an entirely different form: Witches were out to get him and he had to confuse them so they could not get into his mouth...The fact that he could not speak without confusing everyone, that he scarcely said a sentence that made sense, makes all too much sense now.
But the fact that all of us were stuck with the same diagnosis struck me as rather bizarre even then, since logically we ought to have had more in common than the fact that we took the same class of medications: anti-psychotic drugs which we more or less hated in common, and which many to most of us either cheeked or refused outright. But I could discern very little that bound us together, beyond the label and the unpleasant, and undesirable class of meds they -- the medical establishment -- plied us with.
I want to continue this later, but I need to finish a speech that I am giving tomorrow evening at a meeting at the State Hospital in this state. So I need to leave this unfinished for now. I hope you get a chance to listen to the interview, and will return here to read and maybe contribute a comment to the discussion.
Gail Hornstein Interview on Madness and Meaning
Saturday, June 18, 2011
Interview on the Dr Manny Show
I want to add something to this post, which came to me after watching the interview another time. Although the incident alluded to again , the one about Kennedy's assassination being the start of my schizophrenia, is mentioned in my poetry book as well as in Divided Minds, my new psychiatrist has a take on it that I found immensely -- I dunno -- reassuring, and somehow right on the money. Dr C suggested, and it feels right to me, that although I heard voices and deeply felt responsible for JFK's death, highly sensitive pre-adolescent children can be impressionable and emotional, and often they may get so involved in a tragic event such the assassination that rocked the entire country, that they may indeed begin to blame themselves. She feels that instead of the incident indicating that I was in the prodrome of schizophrenia, that it was instead an extreme emotional state, but more or less "normal" for a sensitive kid going through a terrible time.
I cannot tell you what relief this take on the event gives me. Why, I do not know, but I feel better being able to see my childhood through this other lens. To be able to say that indeed the illness maybe did start later, rather than to have to try to figure out why there was such a long break between 6th grade's psychotic episode and 10th and 11th grade and certainly the breakdown in college. To see the Kennedy episode as something altogether different, and not prodromal at all, puts another spin on things. It is not that I think that childhood mental illness is something to be ashamed of, only that I did well in those days in other ways, though not in all ways, so to date schizophrenia from age 11 always felt a bit shaky, compared to later years when my ability to cope was so diminished.
Wednesday, June 8, 2011
Thursday, May 26, 2011
Well, the first thing I want to say is that I would date my "recovery" process from, um, 1996 when I first started taking Zyprexa and experienced an awakening of the nearly proverbial kind (in a manner of speaking). "Awakening" of the kind first described by those taking Clozaril/clozapine. "Awakening" tantamount to those seen in the movie starring Robin Williams, though of course nothing really like those, since that illness was encephalitis lethargica and the drug was L-dopa. I felt that life had somehow suddenly "come to life" that the lights had come on in my brain. I had never felt anything like it before. One day I was dull and listless and unable to do more than read a poem on one page. Then next day, there I was, reading the entire New York Times, and wanting more. I could not believe how hungry I was to read and learn. And how much I could suddenly do so.
But would I really date my recovery from then? Hmm, no actually not really. After a few years of marginal, but real stability in the sense that I remained "hospital-free" I experienced a major psychotic break at the cusp of the new millennium, was hospitalized for three months in almost constant psychosis and for the next four and a half years spent nearly half of every year in the hospital.
And it was not only that I was hospitalized, but that in every hospital I was sent to I was so out of control that I was placed in 4-point restraints time and again, injected, secluded, and subject to any manner of brutality by hospital staff who did not understand or want to take the time to treat me. What they saw as willful "misbehavior" was always, always, always paranoia so profound that I dared not even state what I believed, lest it end worse for me. The fact is, I was controlled by a delusion that said, if a person is in your house, planning to kill you but acts as if he is a friend, then the last thing you should do is let him know that YOU know of his intentions: once he knows you know, the gig is up and there will be no escape...I do not know if you can follow my reasoning here, but in my paranoia I could not even speak to the staff at those hospitals of my fear because if I did, they would drop all their pretenses of being merely hospital staff...
Be that as it may (I have written many times of my brutal treatment in hospitals and will post them here in the days to come, for those who have not seen them at Wagblog), no, I would not date my recovery until about 2005, coinciding with the publication of the book I co-authored with my twin sister, DIVIDED MINDS: Twin Sisters and their Journey Through Schizophrenia.
Somehow, around that time -- I had been off the Zyprexa for about a year and a half, and on Abilify and Geodon, miracle drugs in their own rights, but not the same as Zyprexa, just without the same devastating weight gain and sedation -- I managed a self-transformation, physically at least, to such an extent that in this building where I had lived for 10 years at the time, and where many people know one another by sight at least, I began getting asked such things as, "When did you move in?" Or, "Are you a newcomer?"
So I looked different, and I was on a book tour and learning new things by the minute -- how to travel and do public speaking and eat in hotels and so forth...And it was heady rather than frightening for the most part, thought of course it was exhausting and that brought its own dangers. But for 6 months or more of the book engagements I did wonderfully.
Nevertheless, even after the "acute" book tour was over, the hospitalizations never ended. Neither did the "out of control" episodes, or I regret to say, the brutality, not until the last stay in Dec/January at a hospital in eastern Connecticut, where they have decided to eschew violence as a policy.
Even so, I would never not say I was in recovery. Of course I am, despite the hospitalizations and repeated bouts of psychosis! So what is this "thing" recovery anyway? And if it is a process, what is the end result?
Usually when anyone else but someone with a psychiatric diagnosis speaks of recovery they mean, full-out cure. Let's not kid ourselves. When you recover from pneumonia, you get better, you do not have pneumonia any longer. When you recover from the flu, you are cured. When you recover from a broken leg, ditto. Yes, there may be residual damage, if you have a heart attack say, or pneumonia, but you do not still have the process itself going on, or you would not call yourself recovered. Rarely do people say that they are chronically IN recovery from anything but either a psychiatric illness or poorly controlled substance usage. But man, do we! The problem with this whale is that like Moby Dick it can lead you out to sea, capsize your boat and abandon you, floundering. What use it is to say, you are in recovery, if you remain miserable, despite all the medications stabilizing you so you are not "in the hospital" or "utilizing resources"?
One of the saddest things about schizophrenia is how little we are satisfied with, how small our lives can become without our even noticing it. Back in the 1980s and early 90s, when I was on Prolixin, I simply had no idea that my life would or even could expand so, that it could take in so much more than the four walls of my smoky room, and the coffee and cigarettes that I occupied my day with. Still, even then, I wrote an "first person article for the Schizophrenia Bulletin relating how much happier I was being on Prolixin than "before" and how much fuller my life was, how much more fulfilling etc. I had no idea how little I was living, because i had nothing to compare it to. Literally.
So what is recovery? Oh, gag me with a spoon! I hate that word. It is meaningless, since clearly I have not recovered from any illness, not in the sense that I 1) do not need medication 2) do not need the hospital from time to time 3) do not need a doctor's care frequently. So I am going to throw it away with the bathwater and say that I do not give a ssastar (read it backwards) about recovery, in or out, only that on Abilify and Geodon, and Latuda during crises, as well as several other medications for stability as well, I can do art, write and feel reasonably well much of the time.
But the important thing is that I am productive and do not feel strait-jacketed either by illness or by medication or by others interfering and telling me that I should or should not do or take or be this or that. If nothing else, the best thing these days, aside from having discovered that I can do art (which I took up for the very first time in December 2007) is finding that I have a little more confidence in myself to say to people, I am okay, and I will do these things my way because it is my life not yours and I know how I feel better than you do.
Friday, May 20, 2011
I have linked to the official Latuda site above. I cannot vouch for more information than what was provided me there and in the original package insert.
Two weeks ago I had a psychotic break, despite taking both Abilify and Geodon for schizophrenia and Lamictal for mood symptoms.
To avoid a hospitalization, my doctor and I usually add Zyprexa, but I refused it this time, hating the rapid weight gain and overwhelming sedation, though it is otherwise a wonderful drug for me. This time, though somewhat dubious about being a "guinea pig," I agreed to try Latuda. Previously I had tried both Fanapt and Saphris with disastrous results. The latter in particular reduced me to complete anhedonia and apathy. I did nothing at all but sit in a chair and smoke, which was even worse than before, when at least I recognized that things were not right, that I did love to do art and writing, even though I could not do them at the time.
So on Friday, after an emergency appointment, I went home with a prescription for 40mg Latuda, which was upped to 80mg the next day.
Well, within about 4-5 days the voices screaming at me were gone, my thoughts were much clearer, my energy higher, my mood brighter. It seems impossible, but Latuda might be the medication I have long been looking for: Zyprexa-without-adverse-side-effects, which is to say, no weight gain and no extreme sedation.
Moreover, I wake in the morning eager to rise and meet whatever the day brings. To me, as an artist, poet and author this is so important. I haven't felt so much better or as hopeful in a very long while.
I will say that the one huge benefit of Zyprexa, my first real miracle drug, my "awakening drug" so to speak, was that I was able to read, to concentrate and think in a way that nothing has ever matched, no, not even Latuda. And though I miss this even now, I will have to wait for the day when the perfect drug comes out to permit all my cognitive capacities to function, not just some at a time under the influence of one drug or another. Until then, I prefer doing writing and art, under the influence of what I call the "output drugs" of Abilify and Geodon, (and Latuda) to the input drug of Zyprexa (on which I feed both on books and on food).
Both Abilify and Latuda although they do not help me read, do keep my mind alert and alive, allowing me to be creative, not drugged up. They are as well more than weight neutral, and in fact help me lose the Zyprexa-induced poundage. The one problem with Abilify is that at first it made me extremely irritable, even angry, until we combined it with Geodon. Now I never take the one without the other. Latuda when added to the mix, seems not to cause any additional problem, it just quickly alleviated the psychosis, which the other 2 meds did not cover.
I wanted to report these things here because it is so important for people taking anti-psychotic drugs, many with terrible side effects, to know that there may be another drug out there that might work for them. There is never a guarantee as we all know. Those that work for a certain person, might wreak havoc for another. Some swear for instance by Risperdal, and it only and consistently puts me into complete catatonia. Others hate Zyprexa and would never call anything about it miracle-working...
If anyone reading this has had experience with any of the drugs mentioned in this post and wishes to comment, I would be interested to hear from you.
Tuesday, April 7, 2009
But the problems are the feelings generated inside us. If we trusted that a person truly loved us and that all would work out to the best end possible for all concerned, if we trusted that we were fundamentally lovable and loved ourselves unconditionally, none of it would happen. We would not need to feel jealous. Your girl or your guy might still be interested in someone else, but it would not threaten your sense of self-worth or feeling that you are loved and lovable. So jealousy would not be a problem, you could just be happy that they'd found someone else to love along with loving you, since there's no limit to the amount of love there is in the world or in a person. Likewise they would be happy for you if you found another. No one would abandon you, because they'd still love you, they'd just love twp people, and how wonderful that they love two people, let them love ten!
I know it sounds either impossible or too gag-me-with-a-spoon sentimental, but it works for me, or sounds right to me, even though I have never accomplished it. Why not? Because so far, and I don't know why, perhaps because my dopamine- and serotonin-altering drugs reduce my drive, so far I have had no particular feelings of attachment to people, so I have not been bothered by jealousy of that sort. (Yes, I would perhaps be jealous of someone were they to get a prize I coveted, for my writing say, but I don't know how deep it would cut...due to the dampening effects of the selfsame drugs.) At this point, though, I fear I cannot love at all. Can one love without wanting physical contact? I really like a lot of people, male and female, but I am terribly afraid they will touch me -- physically --in some way that demands response. I can give a casual hug, finally, and shake hands. And one friend who is trained as a massage therapist in CA has given me an abbreviated back massage...But I otherwise shy from contact with other people. If others demand it, I throw their friendships away. So I've always felt I was unable to love...
I cannot approach jealousy, then, from the love point of view, not understanding it properly. But what about from the work and achievement aspect. If you feel truly lovable, does it matter who wins a prize? You'd know the value of your work and the value of yourself and the latter wouldn't depend on the former. You'd be certain you were loved and that you were valuable, that your work was good, whether you won the prize or not. Some people only work in order to win that prize because it all comes down to impressing others to elicit love from them; people like that don't feel fundamentally lovable otherwise than with that sort of proof. If they did, so many bad feelings would drop away...But we need to feel, well, not just lovable, but to love ourselves, first of all, we need to unconditionally simply accept ourselves as we are, carbuncles, corns and every other imperfection included. Once we accept outselves without precondition, and without condition, that is to say, without saying at any time, I love you, except, or unless...it is hard to allow another person's bad opinion to make us feel bad. If I feel I am okay fundamentally, why should someone else saying I'm "half-baked" or mediocre etc matter to me? Why should my merely losing a contest...which is after all usually no more than someone else's opinion of my work (my writing or art) undermine me or make me jealous? If I care about myself, and know my value, then I can realistically appraise my level of expertise and how far I have come as writer and artist, and know "how good I am" in whatever I do. Then I do not need the validation of a prize, and when I get one or when I do not, it need never change my feelings or opinions of myself or my work.
You have to love yourself, because you are going to make mistakes and you will need to be able to forgive yourself. You have to know that you are lovable, fundamentally, because you can love yourself. No matter how bad a mistake you make, no matter how thoughtless you accidentally are, no matter how mean your thoughts and words might sometimes be, that you know, beyond a doubt, the YOU are lovable despite all of that. If only we knew that, all of us, maybe we'd feel less insecure in the world. I know I still obsess about being evil and taking up too much space in the world. And I feel incredibly hate-able, despite all that I have said above. I feel like any Force or Energy or Essence or Spirit or God that might have set us spinning is disgusted by me and will soon teach me a terrible lesson, revenge-time, you know. I have all these unlovable-me feelings that run underneath all my fine words and undermine all I do. But can you imagine if I did not?
Did any of you see the movie: WHAT THE BLEEP DO WE KNOW? If not, you absolutely Must. When you see those photos of water, plain water, vs water that has been prayed over, water that has been told, I love you, and water that has been told, You make me sick, I hate you! It will break your heart but in a good way. The man -- his comment to Marlee Matlin then means everything. The movie is part documentary, part movie-movie, part weirdness animation, but I loved it and so far so has everyone I know who has seen it. It might give you some ideas to think about when jealousy and bad feelings and feelings of unlovabity hit you, too.
Wednesday, March 11, 2009
PLEASE NOTE: if it takes you to a page of poetry that the poems were first drafts and none of them are in the same condition as they are now when finished...
I've said in my speeches, if you've heard them, that the first step, beyond choosing life over death, was vowing to take every medication I was prescribed as prescribed, without fail, until the doctor's orders changed. That certainly stabilized me to the point where I stayed out of the hospital, though I didn't feel particularly well. Then, I finally agreed to try a drug Dr O had been pushing me to take for a year. Xyrem, a night-time drug for narcolepsy, is meant to regulate sleep in narcolepsy, help the patient attain slow wave sleep, and thereby enable her to be more awake during the day. If I could be awake and alert during the day, the theory was, the spells of waking dreaming would happen less often, I would need fewer stimulants, and the sleep attacks would cease...among other things. ( I realize that I haven't actually described these things, and I will have to go backwards at some point and do so, but trust me, they have been a big problem...)
Xyrem is not a drug without a difficult past. Once known as the "date rape drug" it has faced bitter controversy, even being discussed in congress about whether it had therapeutic uses. Luckily, testimony by persons with narcolepsy convinced the powers that be to save the drug from being banned outright. So it is now available, under very special circumstances, and with careful supervision, from one central pharmacy in Michigan or Illinois, as an orphan drug, schedule III or IV.
It is however a difficult drug to take, and I admit that no matter how quickly I get it down, I dread it each time. It's a liquid, just a tiny amount, maybe 6ml, mixed with water or grape juice and taken just before bed. It's foul tasting -- actually on the salty side -- so you have to dilute it well, but not more than they say. Then, the worst part, you must pour a second dose, put it on your nightside table, set an alarm for 3-4 hours later, wake and take a second dose, no matter how deeply asleep you already were!
When I first started taking it, falling asleep terrified me, because I tumbled into blackness after twenty minutes, and the plummeting off that cliff into unconsciousness was precisely what had always made me reluctant to sleep at night. I had a hard time falling asleep for week, feeling the bed rock beneath me, my body trembling and my ears roar, and all sorts of unnerving bodily sensations that turned out to be more fear-related than anything else. After about a month, though, I was able to take it without trouble, except for the middle of the night awakening, which bedevils me to this day...
However, the effects can be felt within two weeks if you're lucky, though it takes months for some, and for me a miraclous 12 days. My improvements had nothing whatsoever to do with narcolepsy though. Improvement in that sphere did take months to appear. What improved so quickly were the last symptoms of my schizophrenia!
It was astounding but the last little but still important symptoms just fell away: I began to look at Dr O and finally knew what she and certain other people looked like; I began to gradually, shade by shade beome desensitized to the color red, which had terrorized me for decades; when the evening visiting nurse asked me if had been hearing any voices that day, I could honestly answer, No. I felt little paranoia, had no trouble distinguishing reality from non-reality, and for the first time began to understand why my delusions were delusions and that the voices were only false perceptions inside my head.
Since we hadn't started or stopped or changed any other drug in a long time, it seemed clear that Xyrem was responsible for this miracle. I really don't have any idea if it would work for anyone else. Dialysis worked for Carol North, a former schizophrenic turned psychiatrist, who wrote WELCOME SILENCE. Since then, according to her, it has worked for no one else and she does not recommend it for any of her patients. So I might be the ONLY one that Xyrem could help. Nevertheless, a nagging part of me reminds me that psychosis is often described as a waking nightmare, and perhaps this is for a reason. If Xyrem helped this go away, literally, for me, (it is part of narcolepsy), who's to say what it would do in others with schizophrenia...
In 2009, a couple of years after I wrote most of the above, I would like to add the following: when I get my 8 hours of good Xyrem-mediated rest at night, with the proper proportion of slow wave delta sleep, I feel like a million dollars the following day. That does not, however, keep all my symptoms at bay, nor does it enable me to cope with everything as well as I wish I could...My apartment seems to "fall apart" and it is so hard to get it together by myself, so Lynnie pays my friend Jo to help me every two weeks (she is also a professional housekeeper) lest it get completely out of hand. My stamina is still limited, so I have to keep a careful watch on how much I commit myself to each day, and in a sense how far from home I go (lest I can't get back before I get exhausted).
Exhaustion is my biggest fear...that and sleepiness. I am so afraid that I will end up somewhere, as I have, and suddenly find myself overcome with sleepiness, and have nowhere to fall asleep for a half hour. That feeling is such agony, and indeed can be overpowering. What then? is my worst nightmare...And the outcome has sometimes been negative to the max. I do my best to take my medication both at night and on time during the day to avoid getting sleepy when I can least afford it. ( I'm always sleepy at 11am, and usually sometime between 3-6pm) I have my cell phone set every day at 11am, but too often I ignore it or find myself somewhere too incovenient to stop and take a pill, to my great detriment later when I find myself suddenly drowsy while driving, or feeling a sleep attack coming on while visiting Joe in the hospital...
Nevertheless, Xyrem has been a miracle drug for my schizophrenia (Lyme-induced or not). First of all, the other drug cocktail apparently treated my more florid positive symptoms, but according to my twin, a psychiatrist, the Xyrem treated the negative ones, made me seem normal: all the things I could do truly did knit together. She didn't know I was on it, but when I appeared at her door after taking it for about a month, she opened the door, took one look at me, stepped back, and said, "Oh. My. God." Then she rcovered a bit, "You look wonderful, Pammy, normal." She says I looked her square in the eye, was wearing something colorful for the first time in decades, had curled my hair and was even wearing make-up like I actually cared how I looked, and she couldn't believe it. She said my walk was almost normal, that I was less awkward in my body and so forth. She felt like she had her twin back.
Wednesday, March 4, 2009
Showing up for the first day's trip, I wore old tennis shoes, of the thin-canvas Keds variety. I had no idea L.L. Bean's half-rubber hiking boots were de rigueur for a course of this kind. What god-awful-ugly shoes just to walk in the woods! I thought in horror. Right then, I realized I'd made a huge mistake and it was too late to change my mind -- I'd have to stick it out for the whole semester. I knew for sure I was going to be more miserable getting exercise than I ever would have with my thighs turning to mush safe in the college library.
The teacher, Miss G, took off stomping down the path and we tramped on after her. I was last, straggling behind, half-hoping to get lost so at least I could head back to civilization. Before we'd gotten far, she halted, peering intently at something near her feet. She waited for us to catch up and gather round her, then pointed at a weed. "Heal-all. Prunella vulgaris," she announced sternly and without passion. "Vulgaris means 'common.' Learn both names, genus and species. Be forewarned, 'Heal-all' by itself will not be an adequate answer on your quizzes."
She stepped aside so we could take a better look. As instructed, one by one the class dutifully wrote down a description and the two names weíd been given. I was still at the back, waiting my turn without the least enthusiasm let alone the anticipation of what, in those days, we called a mind-blowing experience.
"Come on, now, don't be shy. Step up and look for yourself," Miss G scolded me, pushing at my elbow to propel me closer.
Finally the clump of students cleared out and I had a better view. For some reason, I found myself actually kneeling in front of the weed to look at it close up. Then it happened. As if the proverbial light bulb flashed on over my head, I understood what Miss G meant when sheíd said: Weeds are only wildflowers growing where they aren't wanted. Prunella, I know now, was no more than a common mint, found in poorly manicured lawns or waste ground. Yet, with its conical head of iridescent purple-lipped flowers and its square stem ñ on impulse, I'd reached out to touch it and discovered an amazing fact: the stem wasnít round! Heal-all was the single most beautiful thing I'd ever seen. The world went still--there was only the flower and the realization I'd fallen in love.
Since one of my other courses concerned the history of early Christianity, I knew immediately what had happened. Like Paul on the road to Damascus, I'd been struck by unexpected lightning and converted. I put away my notebook, knowing I wouldn't need to write down a word, knowing I'd never forget "common Prunella" as long as I lived.
There were many other miracles in my life after that, but none came close to the thunderbolt that knocked me flat that afternoon when I saw, truly saw, that homely little mint for the first time. "Sedges have edges but rushes are round and grasses have nodes where willows abound." Yes, I learned such mnemonics, which helped me as much as the next person when a plant was hard to identify. But I discovered in myself an amazing feel for botany that was like sunken treasure thousands of feet beneath the ocean. Once I knew it was there, I had merely to plumb the depths, more or less subconsciously, and gold would magically appear.
I went walking in the woods every chance I got and carried Peterson's guides with me even into town, checking out the most humble and inconspicuous snippet of green that poked through the sidewalk cracks. The first time I came out with a certain plant's genus and species before Miss G told the class what we were seeing, she looked at me oddly. I began repeating this performance until once she even allowed me to argue her into changing her classification of a tricky species. If I still hung back behind the group as we walked, it was no longer from reluctance. I was simply too caught up in looking at each tree to keep up the pace.
By December, as the semester was coming to a close, Miss G had begun using me as her unofficial assistant, asking my opinion whenever there was a question as to what was before us. Oh, I confess, I never did get the knack of birds--it was the trees and wildflowers that stole my heart entire.
At the end of the semester, we received course evaluations in lieu of letter grades. I opened mine eagerly, expecting praise. Instead, Miss G was terse and unenthusiastic: "Pamela faithfully attended every field trip, but for most of the course she failed to share her insights and established expertise with the rest of the class." End quote. "Failed to share her established expertise"? What was she talking about? Did she think I'd already known everything she taught us? How could she not understand what she'd done for me, introducing me to little Prunella, how I'd learned everything I knew after that moment, not before?
It was the worst evaluation I'd ever been given, the injustice of which struck me to the marrow. I went to her office to explain and found a sign on her door saying she'd been called away on a family emergency and would not be returning until the next semester. But I wasn't returning for the second semester. I was transferring back to my original school.
I caught my ride home, spending four hours crammed into the back of an old Volkswagen with three other students, wordless with indignation that reverberated in my mind. How could she think such a thing? I couldn't stop writing and rewriting a letter of protest in my head as the highway flowed endlessly beneath us.
I did write the letter, finally, explaining all she'd awoken in me, emphasizing my new-found joy and amazement. At the end of March I got a reply, but no apology or hint that she understood her misunderstanding. Not even appreciation for my gratitude towards her and what her course had done for me. Just a brisk, no-nonsense note, little better than a form letter. I had the impression that she didn't quite remember who I was, that I was just another faceless student writing to her about a natural history course she'd taught perhaps forty times in her long career as a teacher.
Whether she knew who I was or even recognized what she'd done for me mattered little in the end. What did matter was that when I met homely little Prunella I discovered the whole world in a common weed and it changed my life.
Thursday, January 29, 2009
"My head is filling with people screaming and gnashing their teeth...I fear I may need to barricade the door." That's how I ended my last wordpress blog entry, the one I wrote tonight, after the visiting nurse, finally reassured I'd be safe, left. Oh, I am safe, safe from myself at any rate, which is what I knew mattered to her, visiting behavioral health nurses always being concerned most about suicide and/or acts of self-injury towards that end. And since I have followed such commands to set my leg on fire or put rolls of cigarettes out on my face, I suppose I can appreciate her concern. But tonight, it is not myself whom I fear, but the social chaos of a society gone mad with fear. They are all running away from the rising water, the rising sea level, the reversed gulf stream that is freezing the coast line forcing everyone inland. That is what they tell me, all the people, crying and moaning...But then they stop and there is quiet and I am confused. Where did they go? How could so many miserable, terrified people outside my door suddenly fall quiet en masse? Do I dare look outside? Do I dare go outside my door?
I just put the barricade up and my heart rate fell shortly thereafter, as the noise level went down as well. Now I feel safe. Now I feel safe.
I will return to the reconstruction of the Wagblog of schizophrenia.com website except that I want to add one thing. Please note the following, which I found on the website "Is Barack Obama the Messiah" website: 'Lawrence Carter, dean of the Martin Luther King Jr. International Chapel] said many people look for a sign from God when times are turbulent. And, he said, there are many elements to Obama's win in which Christians can find spiritual significance.
"It is powerful and significant on a spiritual level that there is the emergence of Barack Obama 40 years after the passing of Dr. King," said Carter. "No one saw him coming, and Christians believe God comes at us from strange angles and places we don't expect, like Jesus being born in a manger."
Some see God's will in Obama win, by Dahleen Glanton. Chicago Tribune November 29, 2008.'
There were other such evaluations but I would like to make an observation: one is that Barack comes from B-R-K, in arabic meaning "blessed or blessing", two, that Hussein, his middle name, is an alternate spelling of Husayn, which is a diminutive of Hasan, the grandson of the prophet Muhammed, the founder of Islam. (Note: Obama's father was born a Muslim but soon became atheist, while Obama himself belongs to the United Church of Christ.) Nevertheless I would note that Hasan/Hussein refers back to a god-like or prophetic personage, which is significant, though not the specific religion. Three, and this strikes me as most important of all, while "Obama" itself may have no meaning, what no one has noted before, spelled backwards, amabo, it means in Latin "I will love...". And who will love, unconditionally everyone? Jesus, come again, in glory and splendor to usher in the Kingdom of God, but also the End of this World.
I will say no more, only present the evidence such as it is and let you look upon it. It is not complete, not here, not yet. But as the weeks pass I will be adding to it if it presents itself further to my eyes. As I believe it will. For I suspect that this good man at the head of our government is not to lead us merely out of a temporary "economic downturn" but has, as it has been suggested from many many corners, "come to lead us" in the path of righteousness...and towards an unimaginable future. Alas, it is a future I myself do not wish to see, being too lovingly attached to this green world, as little green as it still is. And I do not want to have it end, not even for the second coming of Christ. So I grieve it's loss the more, and weep and weep...
Friday, January 16, 2009
MANIFESTO or Grey Crinkled Paper #2
First, personal business: the voices are back, music especially, but also the old password voice running along, like a TV show's "audio crawler." This is very distracting, even the music, yet at times, as commentary, it seems much more truthful than what is said by those whose voices are "real" or at least non-hallucinatory. I know I saw some show with my friend Joe that illustrated what these voices are like, within other contexts and in other times, but we’ve both forgotten which show it was (perhaps Star Trek Voyager?). As I wrote in my entry on "Voices," the movie, LULU ON THE BRIDGE, gives a brief but helpful example of the more muted, confused babbling form they sometimes take, as when, for example, Harvey Keitel is walking along that wall at night...
In any event, the password voice is my one-word short-hand for the way the voices sometimes sound to me: 1) monotone 2) stage-whispered 3) secretive yet as if imparting a truth others should not hear.
That said, let me explain what they talk about:
Grey Crinkled Paper, first of all, which must be spelled grEy not grAy, though the reason for this particular spelling is unknown to me. How it came to be part of my life was, as I belive I wrote in the first Grey Crinkled Paper entry, at age 16 or 17 when my body inflated like a Macy's Thanksgiving Day parade balloon and my hands turned blue, which was the most important thing about the experience before the vision, revelation -- what have you, something that cannot be truly verbalized -- came to me in the words: Grey Crinkled Paper. It was what I understood to be a kind of holy trinity, very much like Father, Son, Holy Ghost, or Newtonís 3 laws of thermodynamics, or Einsteinís three: 1) the special theory of relativity, 2) the general theory and 3) the (never discovered) unified field theory.
Now, there are complications to this, because once I can get the problem of GCP solved at least in this world, I will be freed from the Supermetal Canister into which I was placed as punishment for some higher dimensional crime. Meanwhile, onto the walls of this canister are projected in All-Sensurround the reality of this 3-D earth-world, while electrodes, implanted in my skull, impart knowledge of cosmic history as well as of a personal life, consisting of "memories" as well as their significance.
(The other way to free myself, apart from solving the problem of Grey Crinkled Paper, would be to surgically remove these electrodes, which would be painful, but which would prove my worthiness to be welcomed back to those higher dimensions...)
To continue from previous paragraph:
which means that people here are actually no more than the equivalent of movie projections, only apparently real. When I am liberated, all of them will, along with the world and the rest of the canister’s projections, end, pfft!--with no more suffering than Humphrey Bogart "feels" when Casablanca finishes for the umpteenth time.
The Canister is made of Supermetal which has always been explained to me as Titanium/Uranium. Whether this is a feasible earthly metal alloy or simply the English equivalent for something there we have no concept for I don’t know.
Involved with this are the Five People. They 1) are not in themselves stable as persons, that is in their appearances; they will take on a body when convenient and leave it when it is no longer useful, without the real person ever being aware of it, 2) these bodies are disguises, ever-fluid and changeable at will. For example, there was one security guard when I lived in supervised housing at the old nurses' dorm at the hospital that I knew was one of the Five People, and he knew I knew, which led him to torment me openly: bugging my room, video-monitoring me, giving me non-verbal messages whenever I passed him. I recognized him, and his face stayed the same that entire year, but as soon as I moved out, he left that body and now I no longer know where he is or in which body he is hiding.
I have had for some time now a vague suspicion that the part-time social worker in this building may be one of the Five People, if not the very same one but the same one or anther it scarcely matters... 3) what I know of these Five People is little except that they used to be controlled by my father and were utilized to monitor me, and therefore theoretically they could be used to eliminate me at any time. However, my being the messenger of Grey Crinkled Paper might attentuate this power, making it impossible for someone-- whoever is behind them, whoever is controlling and sending them --to actually kill me.
Who or what these Five People are, why they are, where they come from, these non-human beings (emphatically not aliens) is not very clear to me right now beyond this. One thing I understand is that like most things in this context, they too must have some connection to the higher dimensions and Grey Crinkled Paper.
Grey Crinkled Paper BTW is a concept and is neither grey-colored nor paper-y nor crinkled. No single word of it can be taken separately to signify anything without the other two.
However, Grey Crinkled Paper doesn’t mean anything either, not even to me. It is only a message of supreme importance. It just is the vehicle, the memo given to the messenger who happens to be me, and until it is understood by all, can be understood by none and cannot be utilized as it should be to achieve world peace. The problem is that in order for anyone to get the true meaning, it must be translated 22 times by 22 native speakers of 22 different languages or dialects, two of which *must* be Arabic and Farsi (I don’t actually know if this last is a written or spoken language, moreover, I didn’t know what the word meant at all when I was first given the information and assignment at age 16).
This part is critical: The translation of Grey Crinkled Paper must be sequential in time and space and must be done without reference to or help from the original transfer-er of the message (ie me). You can think of the translation process like this: it's as if someone were to say the quay of Normandy and another person heard it as key of Norman Dee and then translated this into his or her native language. Such a misunderstanding is inevitable and it is not a error but is the entire point. Like the telephone game that kids play in which a phrase, whispered from child to child, comes out transformed at the end, so too will GCP be transformed. While the child's game’s message may be nonsense, in the 22-link chain of the Grey Crinkled Paper translation, the end result will make a sense that everyone will instantly understand and appreciate. In short it will reveal the true meaning of the phrase rather than obscuring it.
Can you understand this? The one necessary part of this process is the final translator in the chain, who must be a non-native speaker of English, who therefore would have no inherent drive to make "sense" of what he or she hears. She would only innocently convert what she is given into the English words she knows, which would turn out to be the final message, the Truth.
This is all so far focused in the Middle East, but not all the languages or dialects (so far as I can determine) need to come from that area. I know only that Farsi and Arabic *must* be among them.
Why the movie THE MATRIX is so important is related to all the above: this film takes Reality (ie GCP), which it has sucked out of my head, and converts it to a Concept, a falsification by definition, which is the first insult. But then it proceeds to distort this into fiction, to make it comical and falsely profound. Finally, it garners huge profits and a wide fan base for its makers, which is a triple or quadruple whammy against me, not to mention the sort of sacrilegious mockery no one would dare perpetrate against Catholicism or Islam or Judaism. The movie is indeed amazing, I agree, especially insofar as it gets certain things right, like the character of Morpheus, played, as you may recall, by Lawrence Fishbourne. But the inaccuracies soon multiply and it begins to infuriate me even as it mesmerizes me to see anything like it made public. What amazes me still is that the movie was made at all, and apparently without fear of the disavowal and disrespect I know I’d have been treated to had I propounded the very same Truths.
Thatís all I have to write about these subjects for now. But these are only partial thoughts and not the whole matter by any means.
Wednesday, January 7, 2009
NOTE: This is also post in another blog, Wagblog, but it has an addendum at the end that the other blog does not. I try to keep the two separate and different but cannot always do so, and I found the discussion of sufficient interest as to want to have it in both places. If you happen to have read this in Wagblog, just skip to the end and read the last few paragraphs, which are set apart by a line.
I am trying to start a new book, another memoir. This is an exciting endeavor but I’ve gotten stuck on the problem, a perennial one I imagine, of how much does one really remember, and how much does the mind “make up," that is, remember improperly? I know that some writers of autobiography -- to my mind a more stringent form, requiring research and some historical context --and memoir make the claim that every word they have written is factually accurate, to the extent that they have checked each one against the memories and records of others. Then there are the infamous ones who have played so fast and loose with the truth as to have lost all semblance of it. These have produced literary scandals (as well as books that probably earned their authors much more income than if they had actually stuck to the facts) and more or less short-lived discourses by the punditry on the nature of truth and memory: what can we really know? Since I am something of a sucker I tend to take both of these at their words, when in fact I daresay that neither of them ought to be. True enough, the one has done more work than the other, and has made an honest effort to search for the "real facts" in his or her history, but my question is this: Can it be done, one, and two, why should the collective memories of say, ten people chosen by the author (biassed) be more "objectively real" than the simple truth of what the author herself remembers? Yes, you might build up a larger group of pieces-of-the-elephant if you have ten blind people who feel only one part. But unless you have someone who knows how the pieces fit together, you still only have elephant pieces...And so ten pieces are no better than the one in the end.
What I am saying is this: the author, the person who lived the life has to be the one to make sense of it. She might have a thousand "elephant pieces" -- memories given her by ten people, yes, or only her own memories but in the end she must construct what the elephant – her life--looked like out of them. In some sense, there are facts and there are facts, but the work, and the life, and the living is all in the interpretation; always was and always will be.
That said, I am having trouble getting started, because I don't know whether I want to use more "objective" sources or evidence this time, or not. I am perfectly comfortable using what is close at hand: my journals, my photos, the people I can easily consult. And I do feel very uncomfortable with mining deeper records: I do not particularly want to see what is written on my hospital charts during months-long stays when I was ranting and screaming for days, or engaging in outrageous behaviors like taking a dump on the floor of the seclusion room, or disrobing and...I can scarcely bear to think I did such things, frankly, and do not want to read what was written about me at the time, knowing nothing can be corrected or updated to show them the "new me". A sad fact about hospital records and workers: they only see you when you are at your worst; they rarely get to know if you get better. Much less get to know you when you are well. And if you ever wanted to sit down and tell them what was actually going through your brain at the time they believed XYZ, but in fact QRS was happening, well, forget it.
So, I am loathe to overturn those stones, growing mossy as they nearly are now, some four years later. It pains me even to bring my mind across the memories of them. I have no wish to flagellate myself. My own journals say little, but it's about all that I want to know. At the same time, my own brow-beating conscience tells me, NO, you must do what you do not want to do. The very fact that you do not want to do it means that you should. No pain, no gain—
Oh, I just go on and on. I would make this next book a torture to me, nothing of pleasure at all, just to serve my scruples. Be gone! If the writing is only to torture me, why do it? I'd be better off with my artwork and sculpture. But writing nurtures me, so long as I do not let my illness turn it into a punishment. Is there any need for me to use the historical records in telling the tale of my life? Did my first book lose anything in my not doing so? I would change a lot in DIVIDED MINDS, if I could go back and do so -- add scenes here, take out one or two, most certainly make better transitions -- but except for appending a much clearer discussion of this very issue, and also a better disclaimer, I wouldn't change the way we wrote it.
So I might have talked myself to a place from which I can start, allowing myself the freedom not to have to delve into the official records or consult professionals involved in my care unless I am currently in treatment with them.
Your past after all resides as much in what you remember as it does in anything documented. You are mostly what you remember, and what you remember is sculpted by time and changes over time. If you think your memories remain the same, read back in a diary you haven’t read before, and recover the accounting of a incident you thought you’d recalled with accuracy...You’ll see how inaccurate your “memory” was and how formative this memory had been nevertheless. Then remember that the accounting is itself a memory, tainted by emotion and interpretation and consider those “ten people with their elephant pieces” who tried to give you objective memories of your history. Were they truly objective? Were their memories, even collectively, any more factual and objective than your memories?
In the end, memory is fiction, as someone once wrote in The New Yorker magazine, memory is, well, made up, not real, imagined. I agree, but it is all we have. Literally. Without memory we would be without anything at all, no culture, no civilization, no nuthin’. So let’s not pretend that the fact that memory is fiction isn’t critical. We need memory, and memory is, well, fundamentally untrustworthy, which is why we need thinking, and thinkers and writers to interpret history and memory... Memory is the most important thing we have, the most important attribute we can impart to anything: in almost every sense of the word, when we remember something we keep it alive. Maybe not literally, but then again, it is memory that keeps a conversation going on longer than five minutes. If you forgot what you were talking about ten minutes ago, or to whom you were speaking, nothing much would get said...--------------
Here is what someone said to me about the above:
> Memory is a tricky subject, a tricky entity. For you, I guess it all depends
> on what incidents you want to concentrate on in your memoir. I don't think
> you need to be slavishly dedicated to finding all the facts, just the ones
> that relate to your particular tale. I think using your journals and blogs
> and listening to those people who are close to you is the right start.
> But what is it you want to emphasize in your memoir? Poking into some of
> those unpleasant memories might furnish the right contrast to your ultimate
> success in becoming a published writer and artist. But only up to a point,
> after all you only need a few examples. The bulk need not be so unpleasant.
> Memory. I've lost a lot of my memories, but I still have the feeling that
> some of them are accessible if I could just be patient enough. I, too, have
> thought that it is not possible to recreate a life on paper unless you take a
> creative license. The main thing is that you are striving to be honest in
> your work.
And here is my response to what she wrote to me:
Interesting thoughts. The problems with "finding all the facts" is the question of where and how and who is going to have them? I mean, I could go, for example, to the records of the psychiatric institute where I was once hospitalized after a catatonic episode triggered by an adverse reaction to risperidone. In the ED they dismissed it as "playing possum" once they determined it was catatonia and not a "pontine stroke" and sent me to the psych hospital. There they took me off all meds, and watched me go into a kind of withdrawal, since I'd been abruptly hauled off of two anticonvulsants and a beta blocker as well as 2 antipsychotics and an antidepressant. Within 3 days I was ready to go into seizures and could have had a cardiac arrhythmia or worse, and was literally trembling and sweating with fear and panic, all because they refused to give me my usual medications. On top of this, they claimed my bloodwork said I was positive for "cannabis and benzodiazapines." Now obviously they had mixed me up with someone else and I tried to tell them this, but they didn't believe me and told me there was no way I could have the "mistake" expunged from my record.
The next day, the doctor told me I had assaulted him, to my face accused me, or rather bald-faced lied by saying so, since it simply never happened. I had been there and was conscious. He said that at lunch I had assaulted him with my lunch tray...which was complete and utter hooey...I had not done any such thing, had not even threatened him, not even verbally, not even spoken a threat...He was simply planting seeds to keep me there...
Now then, if I went back to this unit to find "facts" in the record, what would I find there? Facts? Truth? Hardly...I would find, what? An account of some sort, yes, and maybe some of it might be what one nurse or some other believed was going on. It turned out some believed that I had come in high on grass and benzos. But was it true, was it a fact? No. I would not discover anything in the chart, then, that would teach me something I should know about me I didn't know, that is, no facts, only misstatements and even lies...Which might in fact be interesting but NOT factual. And I might learn some opinions about my behavior, some opinions, which is what nursing notes are, about how it appeared I was feeling or what I said. But not much more besides my BP and temps and maybe a few other "objective" stats, though those were few and far between. Some of those were mistaken as well, since one male nurse decided to lie about my weight and what I ate ("for my sake") so I wouldn't be made to gain any weight. He liked me thin, he said...CRAZY, right? But this was all true, and factual though not what was written down in the chart.
Too bad I didn't take more careful notes during this one hospitalization (I usually am never without a pen and notebook) or if I did, I have not found them. But I do recall this clearly, because it so incensed me it was "flashbulbed" into my memory...Because I was so incredibly upset and distressed by everything that happened during my relatively brief stay and so distraught half the time, I think most of it was simply etched into my brain, unlike many bad times, which have been erased like blood washed off painted walls.
Anyhow, I didn’t mean to go on and on about this. Fact is, I have plenty of unpleasant memories to offset the good ones, believe me. And I am honest enough and a good enough writer to want to write about them! (Also, I know how to maintain tension and you don't do it by writing only about positive or happy events, as my first book ably demonstrated...)
As for creative license, I dunno...I only wrote what I remembered, as I remembered it, in my first book. In other words, I did not invent anything, except inso far as I was forced by the publisher to amalgamate elements of one doctor into another. But the incidents were as I recalled them, even if the physical attributes of the doctors might have changed. But frankly the resident doctors were a dime a dozen, there were so many. And the faces were interchangeable anyway. I just remember that the doctor stood there, and that he did such and such. Only a few docs that I worked with for a longer span of time really became individual. But the residents that I only saw for a month or two inside the hospital, those I do not recall. Nevertheless, I do not use “creative license” in the sense of inventing memories or fictionalizing. Memory may be fiction, but that doesn't mean that writing your memories, writing memoir, means that you simply make them up! Perhaps you misunderstood that discussion -- memory is fiction merely implies that one's memories are malleable, fluid, and that they do not correspond to anyone else's. That the truth is determined by one's memories of the so-called facts, which themselves are nowhere to be found, not even in the equally nowhere to be found "historical record" (which is about as reliable as my hospital chart!)
Dialogue is by necessity imprecise. I don't believe anyone reconstructs conversations accurately. But I know what I think people said or what I remember they said. If I also know how faulty that recall is, I also don’t consciously invent memories of it or even parts of memories. I am simply aware how differently others might recall the very same situation. In short, truth, that is, the facts are not absolute: no matter how certain you are that something happened as you saw it, you can be sure that there is someone who saw it happen precisely the opposite way and holds that view with equal certainty.
Enough...I am certain you did not expect or need this much of a disquisition on the subject. I thank you, however, for triggering some additional thinking on the matter.