THE BITTEREST PILLS ARE ANTI-PSYCHOTIC DRUGs but if they work...

and they really work for you, then don't listen to me, keep taking them and the more power to you.

Do you work at a job and earn a living while you take anti-psychotic drugs? Do you support a family or take care of one while your wage-earner partner can keep her or his job without worrying about your sanity? Good, then the "anti-psychotic" pills you take (or I'll add in for good measure, god help us all, the "anti-depressant" pills) are doing what we were always told they were supposed to do. Or if you don't work or care for a family, if not, do you at least live a fulfilling single's life, with good capable friends and family and a worthwhile occupying activity that keeps your mind free of craziness and despondency the preponderance of the time? Terrific!Then those pills, whether they be antipsychotic or anti-depressant pills actually function and you are one lucky dude or chick. I say to you, whoever you are, All Cheers and GO FOR IT! Please do not worry about anything further I say in this or any other blog post. Whatever I write from here on in, whatever I say that you do not agree with, IT IS NOT INTENDED FOR YOU. Why? Because by your report, YOUR PILLS WORK and they do a bloody good job of it. So who's to tell you to change anything? You have no complaints and aside from the possibility that your brain might sustain a little shrinkage, if  research about such things proves correct, you have nothing to worry about. In truth, most aging brains shrink and sustain bits of damage along the way. Lots of things can happen...most of them not drug related at all. One simply cannot worry about a "what if" future, when the present is so bright.

So I repeat, IF you happen to be one of those lucky ones I have described and actually have no complaints, IF, better than that, if you find that your anti-psychotic drug or anti-depressant pills work terrifically well, you have had no relapses, suffer no terrible trade-offs in terms of side effects, then stop reading this blog post right this minute. Why? Because I have nothing to offer you and nothing to say to you. Okay? You don't need me, and you won't want to hear what I am going to say to the others of us out there whose experience has been somewhat to radically different.

But this is a SHOUT OUT to you, there, who don't like your drugs and don't want to take them. Or find them minimally helpful, or wonder frankly whether they really do any of what the docs tell you they do,  forewarned is forearmed...This post is going to be about the charade of anti-psychotic drugs, for the most part, about the fact that they do not in fact function in the anti-schizophrenia fashion that you have been told.  (I likely won't have the time or energy at this point, being on AP drugs myself, to get into the appalling farce of what are called anti-depressants...You could turn to MAD IN AMERICA by Robert Whitaker for a take on those -- just check out his chapter on Prozac for a taste...) It isn't that AP drugs do nothing at all. They do attack the brain's neurotransmitter levels, in some fashion or another. And not just the vaunted dopamine and or serotonin levels either. No, most atypical antipsychotic drugs have effects on histamine, glutamine, noradrenaline and acetylcholine and likely a whole host of other brain chemicals we haven't even scratched the surface of, in the sense of knowing their function in the brain, or in any part of the brain for that matter.

Do you know, did you know, that the Dopamine Hypothesis, the fundmental reason why there are antipsychotic drugs out there now in so many burgeoning numbers was always bogus? It never held water, ever. There was NEVER any reason to believe that dopamine caused schizophrenia, or that a dyspfucntional level of dopamine lay behind the majority of schizophrenic symptoms. It was a bold-faced and bald-pated lie, that's because it is as old as the hills and as tiring. You don't have schizophrenia the way one has diabetes, because you have a chemical imbalance in your neurotrnamitters that these neat little AP drugs resolve and rebalance. Sorry, folks, but that has been baloney ever since we all started developing parkinsonism and KNEW, just KNEW that something was terribly wrong with these miracle drugs that made us feel so terrible.

Did you know that it used to be the criteria for a true neuroleptic, the only way they knew they had a functioning adequate drug, was because it successfully induced parkinsonism in patients. That is, if it induced adequate BRAIN DAMAGE, then they knew it would "work" against schizophrenia. Because the theory was, both in ECT and insulin coma,  as it was in early AP drugs like Thorazine and Haldol that you had to induce brain damage to get a therapeutic effect in the illness. Crazy no? No, not at all, not when you stood to make ZILLIONS and Gazilliions of dollars on these drugs. Not only could you treat a hospialized crazy person with these drugs, and make them "better" and push them out of the hospital, but you could set up a plan for future care, AFTER CARE, that specified that JUST like diabetes, a person had to keep taking these drugs. You never just recovered from an illness like schizophrenia, no. The drugs were miracles yes, but not like antibiotics, They never cured you. they just were a treatment that you had to keep taking. The Gift that keeps on giving...at least for the Pharmaceutical companies who dreamed up the protocol. If they could get a person onto the AP drugs, once, and mandate legally or via a persuasive mental health system that the patient stay on them for life, well then, what a system, and what a money maker!

Oh my eye! What a load of hog wash. All they ever did was dream up neuroleptic ("brain seizing") drugs that physically subdued people and made them more amenable to nursing. So the hospital nurses could be more nursey nursey and kinder, and more kindly disposed to patients who were now drooling and dulled and seemed much genuinely sick, and the patients could be seen as more ill and less hostile and unpleasant to be around, less difficult to treat qua patients..

But it was a strange transformation, because the more sick the patients were made by taking these neuroleptic drugs, the less they were treated like the troubled and suffering PEOPLE they were to begin with. Once a patient, they assumed that role, and the whole cycle began and has never stopped to this day. "Schizophrenia is an illness just like diabetes." That was the canard I was told in 1980 -- we are still being handed the same disgusting lie! -- when I was first officially diagnosed with the condition, or told the name to my face at any rate. "You'll never recover, and you will likely have relapses, but you won't be a back wards patient if you take these pills like a good girl, and do as I tell you. No schizophrenia isn't a death sentence these days but it IS a life sentence..." So what did I do? I swallowed my 500mg of Melleril, yes i did, and I told the doctor I was feeling much better, yes I did. Because frankly I didn't know how I felt and I felt OBLIGED to tell the doctor what he wanted to hear. How else was I going to get out of the hospital and get off those horrible pills that made me put on 20 pounds in three weeks and made me feel so dull and sluggish and tired all the time? Besides, how could I possibly, in those conditions, KNOW how I felt, when the nurses themsevlves colluded to tell me how much better I looked and was doing? I knew I couldn't read or think for myself any longer. But they told me that that was my negative symptoms and had nothing to do with the drugs. It was a problem I would have to come to terms with by talking with a therapist...which was a good thing, that they suggested I see a therapist. Back in those days, it was often frowned upon that ANYONE with schizophrenia actually do any talking to anyone at all. After all, if you talked about yourself or your illness, you might upset yourself or the whole applecart...You might actually go crazy again, you were that UNSTABLE! No talk therapy was usually frowned upon for "schizophrenics." It was seen as not good for them, and destabilizing. What we needed was daily meds and mouth checks and maybe day treatment with a hours job to do each day, like capping test tubes for the lab to keep us busy. Lucky was he or she who could function as a bus boy or table setter. Most of us barely made it to day treatment on time, before sacking out on a couch somewhere for a long snooze to let the morning's dose of thorazine 1000mg or Melleril 800mg wear off a little before coffee hour or lunch time.

Some of us actually turned blue on high doses of Chlorpromazine, and she eventually died, at the age of 28. There was a lot of relapses and some suicides, but NO ONE actually went out and got a job and quit the hospital and got better. No, because the whole damned system was set up in such a way that once you were set up on anti-psychotic drugs, with a diagnosis of schizophrenia, you were put on social security disability payments for life,..and drugs for life followed, and the trap ensued that meant your whole life was a rolling down hill of poverty and more drug taking and relapses...until maybe something amazing happened to get you out of the systematic rut the psychiatric system had placed you in.

MAYBE you found someone you fell in love with, someone who not only would take care of you, but who hated to see you dull and passionless and sexless on the drugs and encouraged you to SLOWLY wean yourself off of them. And maybe it happened to a few of us that it was a success, because love can really conquer all, even the notion that schizophrenia is a life-long hopeless illness. If you got off the drugs in the right way, slowly, and stopped seeing the doctor who told you you would definitely relapse, maybe just maybe you didn't. Maybe your sex life came back and you found out it was better than Haldol and thorazine, and better than being dulled by the system's poverty and being sick. And once in a while that person's husband was so loving and encouraging that they got married and moved away and she stayed well enough to take up a hobby that turned out to make a little money by itself. So she turned it into a business, and miracle of miracles, she didn't fall into the trap of SSDI  after all but stayed well without the AP drugs and became a businesswoman without enough time to think about being schizophrenic again...

But alas, that didn't happen very often. Not nearly often enough. There were far too many tragedies compared to the rare success story. Too many people getting diagnosed with schizopohrenia, and then when the fads for multiple personality disorder came, with that, and all the other fads that had to happen because the drug companies had drugs that they needed to sell use on people and they had to have diagnosese to fit the pharmaceutical picture so they could sell the drugs they had on hand. ADHD, autism are only the latest two...

But I digress, I digress, so let me tell me my own story, if I have the time and energy.

I got sucked in. I did. I was hospitalized in 1980, and even before them. But in 1980, as far as I can now recall, I was up late at night, for the third night, in the hospital kitchenette in an absolute sweating panic about my hands. Why? Because I had this strong delusional belief that they were not my own, but that my twin sister had taken them over and controlled them. I could feel them, and in a sense I could see this process happening. And I heard voices telling me that I was in danger. A nurse came in, and asked me why I was up, and in a panic, i told her. I said, somethings wrong with my hands! They aren't mind, my sister has control of them! And I can't sleep, I can't sleep!

Now, the nurse was a kind woman and I think she meant to help, but she couldnt do anything for me but tell me she would call the doctor, who came, in his fashion, running. I was sweating bullets by then, sitting at the empty lunch table, mumbling about my sister and my stolen hands. What could he do, given his own pharma-company training, but offer me some drug assistance and promise me that it would help, that it was what I "needed" in the throes of my illness?

I believed him, I did. And when he came back the next morning, after I had been dosed three times that night with increasing amounts of Melleril until I finally slept, he pronounced that I suffered from the mental version of diabetes. schizophrenia...The rest, well, if it isn't everyone's history, it is a version of it. And  it involves SSDI and even SSI because I had never been able to work a full time job even before then. And none of the many drugs I took after that ever did anything for me but disable me more than before. And I would stop them and be hospitalized again with what they now suspect is withdrawal psychosis, or could have been. And I would be started back on the drugs, or a long-acting injection that was supposed to prevent hospitalization. It never did much good...I was a basket case, a basket case. I never washed or changed my clothing, or even took off my shoes, not even to go to bed. NO I wore those hiking boots for a good year and a half before they even saw me take off the socks I wore underneath them...

So how much did the AP drugs help me? And when they started to restrain me for paranoid fears and trying to escape a locked unit, did I then say Enough is enough,  you cannot torture me, I have schizophrenia? No, I accepted mechanical restraints for three days at a ttime as a form of treatment. One doctor actually told me that schizophrenics don't respond badly to being tied to a bed for a long time, it helps them, he said, by reducing stimulation...So they did that, and they kept me in seclusion for weeks at a time...until finally I would cry Uncle and take the drug they wanted me on, and go home again, prepared for the next certain relapse, because what else was there....I had a life, yes, but it wasn't much. It was just hospitals and restraints and drugs that never helped me and cruelty from nurses that didn't know they were hurting me. And doctors who were damaging me without thinking twice about it. And I didn't even have the mental wherewithal to know that the drugs were the prime offenders. The PRIME offenders.

It is now 5:30am and I have been up all night. My shoulder hurts, from where i have a slightly torn rotator cuff and frozen shoulder tendonitis... I don't have a bed, only a recliner I should not sleep in...I am a mess, and  I am also NOT going to continue to take my Abilify and Geodon much longer...I cannot. I cannot. I do not know what will  happen, but I am too afraid of what will happen if I take it, to take them, though I have never felt they did me more harm than good. I just don;t know what real GOOD they do me.

More later, or on another day. Sorry this was so impassioned.

.

Daniel Mackler's Amazing Movie About Recovery from Schizophrenia

If this video embeds as it is supposed to, it is am amazing hour and fifteen minute movie narrated by Daniel Mackler. I believe it is legally allowed to be embedded since I got it from Mackler's Youtube site (with the embed button). Please watch it. You won't be able to stop...All about recovery from schizophrenia without medications, not to mention the harm that medications do in terms of impeding recovery... The film features, among others, Joanne Greenberg of I NEVER PROMISED YOU A ROSE GARDEN fame, and Catherine Penney, RN who also recovered from severe schizophrenia largely without psychiatric drugs, with the help of Daniel Dormand MD.

Interview with Dr Manny

My twin sister and I did this interview for Foxnews.com 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.

Recovery, recovery, recovery

Recovery, recovery, recovery, what a whale of a word. And by whale I mean a big whale, a white whale, a veritable Moby Dick of an obsession, only it is one that it seems no one is able to define in any quantifiable way. Not at least so that makes sense to me. "Recovery is a process." You have heard that one, no doubt. I have used it in talks any number of times myself. Well and good, but so is digestion and so is having a heart attack, and in the first case you let it go on about its business in the background, whereas in the second, you definitely want to interrupt the process as soon as possible. So, okay, recovery is a process, as I blithely voice to my audiences, but what do I in fact mean by that?

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.