Monday, June 20, 2011

Meaning and Madness: Is Schizophrenia Real?

 Rossa F (not real name) asks in the comment on my previous post some fantastic questions, which just happen to be of particular interest to me at the moment. The link to the fascinating interview with Gail Hornstein below is an introduction to other ways of thinking about the subject of madness-not-as-a-mental-illness or at least not-as-a-chemical-imbalance. That last has always puzzled me: how on earth could anyone tell me that I suffered from a "chemical imbalance" when 1) they do not even know what chemicals are actually out of balance, if they are, in "schizophrenia," and 2) they do not really know what a truly normal level is in the first place. 

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 with Dr Manny

My twin sister and I did this interview for last year. While I generally consider Fox network as the "enemy," in this case I must tell you that the interviewer, Jessica Mulvihill, was one of the most prepared, and the interview itself one of the most interesting for me and thoughtful that I have undergone since the books came out. Also, while the interview is a little over a year old, the information is not really that dated, though some of the facts are inaccurate. For instance, DIVIDED MINDS is a memoir, not an "autobiographical novel," and I was not asked to leave medical school, as Dr Manny relates. Instead, I was hospitalized. When discharged  6 weeks later, I was given a leave of absence, but promised that I could return after a year off, if I had medical, which is to say, psychiatric "clearance," so to speak.

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.

Thursday, June 9, 2011

Schizophrenia and My Conflict about Taking Medication

Okay, I admit it, I have had my conflicts surrounding the issue of medication -- whether to take it, when to take it and what, if anything, I will take. In fact, I admit that this remains an issue, though less of one so long as there is a medication that I find inoffensive. But more on that later. First let me address the problem of that conflict itself.

In the "old days," which is to say, during the 1980's and early 90's, I was treated with the so-called "typical" neuroleptics like low-potency Thorazine and Mellaril (in doses as high as 1500mg) and high potency, lower dose drugs like Haldol, Trilafon, and Prolixin, either orally or by long-lasting depot injection. Although I was compliant with these meds for a while, I eventually found them so troublesome that while hospital doctors insisted they "helped" me, more often than not I would take them in order to be released from the hospital, only to stop them again. This became a pattern that led, familiarly, to what was called the revolving door in and out of psychiatric units. While I understood this only vaguely, I found the dulling side effects, not to mention the physical discomfort of these medications so terrible that even if not taking them meant yet another hospital stay, nevertheless I often refused -- in fact I could not bear to take them despite the psychosis that resulted. Had anyone bothered to ask me why, I would have told them that the drugs' side effects were simply worse than the illness; they were hell and there were no two ways about it. 

All the hospital staff and outpatient doctors and nurses believed that no one could possibly wish to choose "madness" over mere drug side effects, but I was someone who frankly preferred the former to the agony of the latter.

Now, while I speak as if I knew I was psychotic, that is not altogether true. All I knew was that I was being hospitalized a great many times, that I had been told that if I took the pills I was given, I would be able to stay out. I did not at the time believe that I had any illness at all, and did not for a very long time believe it. However, what I did want was to avoid the often brutal treatment of various hospitals, esp in the 90's , and that was what sometimes persuaded me to take them, not the understanding or agreement that I was ill.

But surely I was not alone in feeling that the side effects were worse than the consequences of not taking the prescribed pills. There would not be so many people with schizophrenia who like me refused them, if so. Whether I believed I was ill and needed to take medication or not, it hardly matters when the pills I was given caused unbearable pain, or so deadened me, I felt, that my life was scarcely worth living...

I know those meds in particular-- the older drugs both lower potency and higher potency, at almost any dose, caused me physical side effects and physical suffering. That alone was enough to make me ambivalent about taking them. What I never knew, and still do not really know for certain, was whether the drugs themselves emotionally deadened me, or whether what I came eventually to appreciate might in fact have been illness after all was the cause of my feeling deadened. Did I lack enthusiasm and passion because of the illness or because of the medication side effects?

Through the early 90s, I was on Prolixin as the least distasteful anti-psychotic, and having been more or less forced to take the long-lasting depot medication, I could not "stop" taking it, not once my weekly injection had been given. Then finally, Connecticut's Medicaid program started paying for Clozaril, and I was among the first people in the state to try it. All went well at first, and I seemed to be off to a good start. But unfortunately, once discharged to home, "all hell broke loose" with devastating side effects that were if anything worse than anything I had experienced on Prolixin or any other older neuroleptic. This may have been unusual, I do not know, but I had horrendous and immediate side effects: sensations of impending doom that made me afraid of falling asleep; then an inability to swallow even my own saliva; a kind of uncontrollable jerking, seizure-like while I was conscious; and when I was awakened -- nearly forcibly -- in the morning, I experienced an unbearable sedation that took hours to wear off...

I gave the drug several trials, but I was not disappointed when I developed a very low white cell count and was no longer permitted to take it. After that, it was back to Prolixin, and back to what had never really lifted, not even with the so-called awakening miracle drug of Clozaril: the deadened feeling. I felt hopeless, as if nothing would ever really work better for me, but then again, why should it when I didn't really suffer from an illness like schizophrenia to begin with?

My therapist, the one who had tried me on Clozaril so many times, left her practice, and I was shunted to a nurse-therapist at the Clinic, one who took an immediate disliking to me. I felt a similar antipathy for her and so with no love lost between us, it was a huge surprise to me when, after she gruffly suggested I try this  new drug, called Zyprexa, that I woke up only 3 days later feeling, well, not only awake and better, but awakened. Awakened, alive, even reborn. I could read, I could remember what I read, I could study and I felt enthusiastic about it all in a way that before then I could only dream of. 

Oh, I knew that I wanted to feel that way, but it had literally only been a dream or a wish before then. I had been vaguely hungry for this, but until I took Zyprexa, it seemed that I had been completely unable to grasp or fulfill my wish to do any of it. On the drug, I could pay attention and concentrate for longer than I had in decades, and learn things and retain what I learned. I felt that I had a whole lifetime to make up for, and started to make up for lost time. What is more, I was so confident in my ability to read and study now that I had found a drug that helped me, it seemed entirely possible to do so.

Why do I tell you this? Because while Zyprexa was the real miracle drug, a medication that did not so much give me back my life as give me a life I truly never had, it was, as I may have said before, also the side effect drug from hell. As I would soon discover, my weight started to increase almost from the first week, and it kept going up and up, despite my longstanding history of strict weight control and a vegetarian diet. Also, it is a very sedating drug, so that I had to fight off sleepiness that added exponentially to my narcoleptic tendency to drowse off whenever I sat down. 

Luckily my psychiatrist soon thereafter was also a sleep specialist; she had no problem treating this with the appropriate meds, and so it was not the problem it might have been, but the weight issue was, and is in fact,  one of the reasons I have on-going conflicts over taking that particular medication.

Side effects of any sort remain 1) the major reason I will not take a given medication, and 2) the major reason I do take the medications that I take. If this surprises you, let me explain. First the latter: Of my present medication regimen, the salient ones for this discussion are Abilify, Geodon, and Lamictal, and I take all three not for the reasons my psychiatrist may have prescribed them, but for their "side effects," at least as I perceive them. For instance, it was only once I started taking Abilify combined with Geodon -- I could never tolerate Abilify by itself -- that I found myself able to do art, and to write so fluently and so abundantly as to be unable to stop once I start. In fact, I call these two my output combo, medications that make my creative productivity enormous, whereas Zyprexa is just as literally my input drug, my intake drug, insofar as I can read and absorb information, and also eat, eat, eat. (Abilify, if anything, tends to cut my appetite.)

For the same reason, though, I will not take Zyprexa because of its intensely dispiriting side effect of causing obesity and with it diabetes and and the concomitant conditions that go along with that. I wish I could take it: I miss reading terribly, miss the heady feeling of intellectual confidence and the ability to learn and remember and such.

Unfortunately, despite my early paean of praise for Latuda, I have to admit I have reconsidered it, as I found that while I was cleaning my apartment regularly, I had slowed down on my drawing and writing, and at the same time had not found myself interested in reading, nor even in watching my usual documentaries...It felt like a kind of straitjacket. I had weathered the psychotic crisis, but after that its usefulness seemed to be limited, and limiting. I agreed to take it, if necessary, in a crisis, but aside from then, I did not find that it helped beyond attenuating the worst symptoms. I wish I could say otherwise, but...

In truth, given my druthers, in a crisis and forced to choose between one hell versus another, I might prefer Zyprexa over Latuda, since the benefit of the first outweighs the complete lack of any positive benefit from the latter. Which is to say, both treat the psychosis, but only the Zyprexa has any positive side effect in addition to that, whereas the Latuda only has the negative side effect of strait jacketing me in the process.

One other "benefit" from taking Zyprexa, discovered within just the first week or so, was the realization that a medication made a difference, a huge difference. The conclusion I began to draw from this was not so sudden, and it was reluctant, but eventually I had to decide that perhaps, if a medication made such a radical difference, and a medication, Zyprexa, supposedly "treated an illness called schizophrenia" perhaps, whether it was schizophrenia or not, I did have some illness. Surely, if this medication, which did not help most people, made such an enormous difference for me, it must mean something...

I was reluctant for a long time to answer that further, and still cannot say a lot more without cringing. But if indeed there is a real entity, a real singular illness of schizophrenia, as opposed to a syndrome, and if Zyprexa really is a treatment for it, an effective and appropriate one, then god bless it, I will accept the diagnosis. I might still refuse to take the drug, but I would accept that I have the illness and continue to say that Zyprexa was the best miracle drug from hell I ever took!

I fear that I may have ended this discussion before I have really finished the thought, so to speak. I have to go to sleep now, and will be leaving for DC tomorrow, without my computer. But I will be back in five days and hope to catch up with this then. TTFN