CRAZY OR NOT HERE I COME

     I used to be “crazy.” Labeled CMI, chronically mentally ill, prone to psychosis, I was a revolving door mental patient, one who spent almost as much time in her adult life in the hospital as out of it. Although I had various diagnoses, the main one was schizophrenia, or the variant of it, schizoaffective disorder, that some claim combines features of bipolar disorder and schizophrenia. Over time, as I bounced from hospital to home and back to the hospital, the doctors would tack on other labels as well, like PTSD and different personality disorders. 

     Although I occasionally was admitted “voluntarily,” most of these hospital stays started out involuntary, until nurses, brandishing paper and pen, advised me of my right to sign in as “voluntary.” I would sign, but this did not mean I could leave because not even voluntary patients could leave at will, not in the state where I lived at the time. If you wanted to leave before the doctor thought you should, you had to sign a  paper stating this. Then wait to see if the doctor challenged the paper. 

      If she did so within three days, you could be taken to probate court for a judge to hear the case. This was never good. We patients knew the judge virtually always sided with the doctors, since we were by definition “crazy” and could not know what was good for us.

       But let me go back to the schizophrenia thing. I heard voices, most of the time. They were usually awful voices, voices that jeered and mocked and threatened me, voices that led me to burn myself dozens of times in an effort to rid myself of them. I heard and saw messages to me in everything, from the television and radio ads to newspaper headlines. 

       I saw tiny scintillating red lights that swarmed about me like a cloud of gnats, and which I called the Red Strychnines.

    I saw Alan Arkin, the actor, and Senator Joe Lieberman dressed as Nazis supervising a conveyor belt sending bodies to the crematorium, and I heard music, people chanting in low voices, unintelligibly at first but later changing to threats. As is often the case, these voices and visions led me to distorted thinking, and to “paranoia,” based on what I heard and saw.

       There were other voices. Brother Luke was the name I gave to the one good guy in the lot. He talked to me about time and space and humanity and love, and I felt safe with him. And there were the voices I called the Little People, to distinguish them from the main voices, the bad ones. 

     The Little People occupied objects I used, like my comb or paint brushes and they would talk to one another but would almost never speak directly to me. I could listen in on their lives and concerns, but mostly could not or did not want to interfere. They kept me company with their constant chatter, but they were never threatening or upsetting to me.

      The bad voices did bother me, however; and I would often end up in the hospital because of them. Living in a hospital is as bad as it sounds, with horrible food, and little to do, and really no help at all except the constant pressure to take medication, which could turn to threats if you didn’t comply. 

     Worse, if you got out of line, that is, if you got too loud or angry at being kept there or treated by force,  they would do things like have a team of security guards strip you naked and lock you in a freezing seclusion cell alone, or shackle your wrists and ankles to a bed, leaving you like that for hours, even days at a time. (Or both at the same time.) I know this because everything I write about happened to me and on multiple occasions.

        Staff called seclusion and restraints measures of last resort, claimed they were only employed when necessary to maintain a patient in safety, but we patients knew they were used almost always as retribution and for punishment.

   Even SAMHSA https://www.samhsa.gov/about-us  [The Substance Abuse and Mental Health Services Administration, the agency within the U.S. Department of Health and Human Services] (the Federal agency concerned with such things) knew that restraints and seclusion were not helpful, and were not used as a last resort at all, as they stated in one of their pamphlets:

    “… there is a common misconception that seclusion and restraint are used only when absolutely necessary as crisis response techniques. In fact, seclusion and restraint are most commonly used to address loud, disruptive, noncompliant behavior and generally originate from a power struggle between consumer and staff. The decision to apply seclusion or restraint techniques is often arbitrary, idiosyncratic, and generally avoidable (Haimowitz, Urff, & Huckshorn, 2006; NASMHPD, 2003; SAMHSA, 2003).”

In another publication SAMHSA writes:
       “Seclusion and restraint were once perceived as therapeutic practices in the treatment of people with mental and/or substance use disorders. Today, these methods are viewed as traumatizing practices and are only to be used as a last resort when less-restrictive measures have failed and safety is at severe risk.”

And this:
    “Restraints can be harmful and often re-traumatizing for people, especially those who have trauma histories. Beyond the physical risks of injury and death, it has been found that people who experience seclusion and restraint remain in care longer and are more likely to be readmitted for care.”

         But both seclusion and restraints are still used and increasingly so as staff to patient ratios are decreased in psych hospitals and units, with more patients per staff and many staff members poorly trained, if at all. 

         I don’t believe mental illness is a real entity any more. I don’t believe in schizophrenia or manic-depression or depression or the notion that anyone’s personality can have a disorder. I don’t believe that psychiatry is a valid science or even an art worthy of the name. And I do not believe that we are right on the verge of finally (for the umpteeth time?) discovering the truth about the origins of “mental illness.” 

        We were told the same thing many times: for instance when the “miracle of psychosurgery” maimed or killed thousands by “helping” them with ice pick surgery and pre-frontal lobotomies. We  were told that when a variety of shock treatments “helped” thousands more, even when bones were broken and people died, and we are still being fed the lie that neuroleptic drugs like Thorazine and Haldol  and the new generation of similar drugs like Zyprexa and Risperdal are in fact “anti-psychotic” and are an effective treatment for, well, whatever ails you…*

       But it was not true that lobotomies helped anyone; shock treatments, which induce seizures, are by definition brain damaging; and the drugs rarely help more than they hurt: It has been shown that, long term, they create more illness, chronic illness, than they ever treat. 

        We should have known that. Back in the 50s when Thorazine was seriously referred to as a chemical lobotomy (which was seen as desirable) doctors noted that the drug was not in fact a treatment that helped the person who took it, reducing symptoms or restoring health. What they saw was that those given the drug became subdued, even immobilized by the infamous Thorazine shuffle, and more “compliant.” 
This helped the nurses be nurses, as the formerly disruptive were now bludgeoned by Thorazine into mild, shuffling sufferers. They were no longer mad men or women, no, they had been disabled by the drug and  could now be nursed as  true patients, patients who were sick and needed nursing care.

 I have been given high doses of Thorazine and know from experience that it is a horrible, life deadening drug. I have been forcibly treated with soul-killing Haldol and Mellaril and Stelazine and the others, and when Clozaril came out I was given that (thankfully, because the side effects were horrendous, I developed agranulocytosis, twice, so I was taken off it) and then Risperdal and Zyprexa and again, as well as most of the others that later came onto the market. None of them helped me or reduced the voices or made me happier.

        Two things did help: Art, which became my life’s passion, and therapy, therapy not with a psychiatrist or an LCSW working under the auspices of a psychiatrist, clinicians who saw only so-called mental illness; but with a woman who does not even have a license to practice in this country. 

     She never saw schizophrenia or bipolar or personality disorders in me when we talked, she saw me, the me beneath all the labels, and she saw me as good, she saw me healthy and thriving, even before I did. She did not want to control me, in fact human freedom was and is her main concern. But she accepted me as I was, and her unconditional acceptance and love (for what else was it?) gave me back a sense of self and the self-esteem to thrive and move forward into my life. 
        

          I want to say a word about my falling in love with art: 
I became an artist very suddenly, overnight, in 2008, and this was a miracle in my life. I did not at the time understand how or why it happened, but I woke up one morning with a voice inside my head (all the others seemed to emanate from outside me) telling me, “You must build a human, you must build a human.” 
Well, I thought, this voice is not telling me to harm myself, so what’s the problem with obeying it? Indeed, I set out to build a human, and did so in three months, creating a life-size papier mâché woman, seated in  a paper mâché chair.