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Although I was hospitalized several times in the seventies, I always returned to school or to home and to doing whatever it was I had been occupied with before the hospital stay. Even after I left med school, following a seven week hospitalization, I was released to my own apartment and the assumption that I would “do my own thing.” It was not until the 1980’s that I came completely under the hand of public treatment and the day programs that not only ordered my days but also ordered my mind in ways that were not always helpful or healthy.
Let me explain one critical aspect of psychiatric treatment in the 60’s, 70’s and 80’s: you were supposed to accept that you were ill and get better, but you were never to ask what was wrong with you. No one would tell you if you did ask, but it was understood that you simply would not. The mere desire to know your diagnosis was treated as if it were outrageous, prurient curiosity. Who were you to know the name of your illness? What business was it of yours? No, a patient was expected simply to “get better, never knowing what was the matter with him or her. Sounds crazy, yet that was how it was. They knew, they knew something, and you were not allowed to.
The other important aspect of treatment at the time was the understanding that having an illness, being ill, had a cause, a personal cause, i.e. someone was at fault. By the time I fell into the hands of the System, this was no longer the “schizophrenogenic mother” but the patient him or herself who was t5o blame. If the victim could be at fault, suddenly the picture changed: in getting better, you were expected not to reap "secondary gains" from having been ill, as if there were benefits from illness and that you had chosen one over the other as if a college course or career.
Such psychodynamic theories of “mental” illness, the notion that our own frustrated desires and fantasies caused illness, implied that somehow if we delved deep enough into our own minds and histories we would uncover the key to why we “made ourselves sick.” That was the thought; in practice it evolved a therapy of blame and accusation (“you wanted to get sick so you’d get more attention” “you don’t try to stay well because you like being taken care of”) and of behavior modification called by a dozen other names (“If you don’t get rid of the single Q-tip in your wastebasket, your room will fail inspection and you will be kicked out of the halfway house to the streets, even though it is winter and the shelters are full...”).
Yes, there were other schools of thought. Psychoanalysis was still in use then, even in the treatment of schizophrenia, as I knew because a friend of mine was being treated by an analyst. Indeed, this doctor was the first person to tell me, through this friend, that I too had schizophrenia. At the time, though, all I knew was that I had anorexia, which was obvious, to me at any rate, given my reluctance to eat and my 85 pound body. What I didn’t yet understand was that because of this I had been diagnosed by some as having a borderline personality disorder. (I believe anorexia was by definition grouped in this category at the time.) Not everyone agreed, clearly, and so it was a subject of some dispute whether I “was” borderline or schizophrenic. As Lynnie told me later, there was absolutely no reason why I could not have had both disorders – neither one ruled out the other. But as a line was eventually drawn between borderline and anorexia, it seemed that I did not “have” a borderline personality after all (rather magically, they claimed, I’d outgrown it...). I did have schizophrenia, as a doctor told me flat out one day in the, yes, early 80s in a university-run hospital. I was surprised even then by his candor. It was not common at all. I’d never before had anyone speak to me so frankly about mental illness. I chalked it up to his having been from India and so not in tune with the indirect ways of American psychiatry. I found it a profound relief to have someone speak plainly, not beat around the bush. However, it was in fact still the 80s and when I was discharged I returned to the same half-way house as before, where diagnoses were never spoken and supposed never to be known.
My friend Joe always speaks of a sense of self, how it is essential to a general state of mental healthiness. I don’t know how I appeared in those days, withdrawn, dressed invariably in a uniform of navy blue denim jumpers, avoiding all eye contact– did I seem to others to have a mind of my own, desires and wishes and opinions and so forth? I don't have any idea. In truth, I did everything by virtue of monitoring the words and body-messages given out by all around me, and tailoring everything I said to what I thought they expected of me. I had no mind of my own, except insofar as I had “decided” (thought I had to) to do what they wanted me to. Say, for example, if – and this really happened -- a particular doctor was interested in mythology, as was one of mine, as a Jungian, then I too was “fascinated by the old myths” even though in fact I don’t think I could keep any of the characters straight in my head and was bored silly by all of them. Another time, a poet/teacher asked me if I really wanted to write a book (he wanted to help me write one, so he said) and I thought he wanted me to say something to get him out of the responsibility, that he didn’t really want to do it. So I gave him an excuse and said, “No, if I did, my father would get a kick out of it, and I don’t want him to because he won’t talk to me.” (This was, mind you, 15 years ago.) The thing is, Of course I wanted to write a book, but all I could do was to try to glean what HE wanted, and I knew somehow that he wanted NOT to write any damned book with that loathsome Pam Wagner. So I did what I had to: I let him off the hook, as he wanted me to. As I thought he wanted me to. And so we never did do the book...
That’s what I mean by no sense of self, no sense that I had any autonomy or right to exist or to have any wishes or desires or needs of my own, outside of those decided upon and granted me by others. Oh, yes, if OTHERs said, you like those...orange peel innards, don’t you? Then by golly I did like them, whether I knew what the hell they were talking about or not. Because in my world, others knew me better than I could possibly know myself. I did not have the right to assert anything different. How could I? I had no possible defense for saying, “I know myself better than you know me.” I knew perfectly well that ANYone could tear that apart in an instant, simply by observing that I was...xyz, and dare me to deny it!
Argh! Where was I going in all this? Well, that was a huge problem for me in those days, because I did not in fact know how to defend myself against any of the many attacks on me, even on my character (when you are labeled borderline, even when it is only because of anorexia, there are times when your character is indeed under attack). How could I defend myself when I did not 1) have a self to defend, or 2) feel I had a right to defend whatever that self might have been? None of that stopped the assaults...which pain me to this day, the galling assumptions and unspoken, uncorrected judgments against me. I could do nothing about them at the time, felt helpless to stop them, felt even that “maybe those people are right after all,” since I had nothing better to replace their accusations with or to substitute, saying, No, I’m not that, I’m this, and you are all wrong!
Eh, let it go, Pam. What’s in the past, sometimes has to stay there. It does no good to try to dig it up and change it. Can’t be done-- the egg is broken and can’t be put back together; besides, you ate and enjoyed the omelet. Yeah, it’s true, 25-30 of the past forty years of clinical psychiatry have not been kind to me, though there have been plenty of kind people, isolated like raisins in pudding, through the years. It’s hard to put all of it behind me, since it is in fact my life. It is not as if I’ve had another alongside it: I did not also have a marriage and kids and a career etc. No-- think about it. When I speak of clinical psychiatry, I speak of my entire adult life, and how it has affected me over the past 4 decades. When you see it in that light, perhaps then you can understand why all this looms to important to me, why I find it so hard to let go of the poor and abusive treatments of the 70s and 80s, my apparent, but only apparent (what else was there in my life?) obsession with illness and hospitals, and why, now, I find myself at odd hours in front of the mirror looking for someone I recognize.
4am. I came into the bathroom for something this morning but I don’t what it is now. I glance at myself in the mirror on the medicine cabinet, arrested by my reflection. That woman is me, a 55 year old “could-be grandmother?” But no matter how I look at her, I cannot see it. I see the tired dark eyes, the fine lines around the mouth and eyes. But to me, she still looks like the fifteen year old she is inside. How can she, how can I have gotten so old when I never lived? I never held a full time job or earned a living or paid my bills (not to mention taxes) or was complerely responsible for myself. Sadder, I never went on a date, I never danced with a partner, I never stayed up till dawn with someone I loved. And I never loved, I never fell in love, no, not even with Joe, for all that I love him. Not in that way, not in the Cinderella, butterflies in the belly, toe-tingling to head-fizzing way we all know that I mean.
I have lived a life constrained by my illness and by the financial limitations Medicaid and Medicare impose. Even now, because I desperately need the medications, housing and visiting nurse services these insurances provide, not to mention a safety net for inpatient stays, I am unable to earn a cent from either my jewelry-making or any book I might write. I am unable to seek any modicum of financial independence, simply because I would certainly be unable to provide for complete independence. It is truly an unfortunate feature of this system and it forces me either to remain idle, which I cannot do – or essentially to give away all the fruit of my labor. (The only possible remuneration for it that has been suggested, a great suggestion at that, is one Dr O made: the exchange of bartered services. If I gave someone my new sculpture for instance, I might ask them in return for 10 rides to see Joe, or something like that.)
Well, I realize this blog entry has gone from A to 8 and not to Z and certainly not back to A. But I hope I have covered some useful or interesting ground in the process and at the very least have not bored everyone 6 feet under! BD
Hi Pam! I work as a mental health counselor for people who have "severe and persistent mental illness" (the system's term, not mine.) Lately, the big push from the state office of mental health is for "recovery" which, in my conspiritorial mind, is a veiled attempt to get people out of the "system" so the state doesn't have to pay for them anymore.
But even if I'm wrong, if we as therapists are suppose to promote recovery in a way that the person can live a fulfilling life as he or she sees it, the same system telling them to "recover" is also preventing them from doing so.
Case in point, I met w/ a man yesterday who had back surgery last year (& still has pain), is blind in one eye, and suffers from "major depression w/ psychotic features." He makes $700 a month on SSD. He is married w/ 2 kids, and is unable to pay his bills. He wants to go back to work part-time, but if he does he'll lose his "guaranteed" income from DDS. That said, he is afraid of a relapse in both physical and mental health symptoms from working, and thus worries that from trying to better himself and his life, he'll lose the safety net that HELPS him to stay well.
ARGGGGGGGGGGGGGGGG!!! I feel like screaming every day from working in this system!!
I enjoy reading your blogs because I get "insight" into how my clients might actually be feeling. It's funny because some mental health "professionals" expect clients to have insight into their illness, but the clinicians don't make much of an attempt to gain insight into clients' illnesses beyond text books and journal articles.
I truly believe that therapists and clients have the right to know each other cuz, after all, the clients are expected to give all of their information freely - why not get something back from the therapist in return? So since you share so freely your frustrations w/ the MH system, I used this as an opportunity to share mine :)
Posted by: Laurie B. at March 1, 2008 08:55 AM
Pam, I have visited your blog in the past + just checked in after a long time away. We have some interests/characteristics in common. Writing - particularly poetry, making things (crafts). I also am 55 and so can identify with the time frame of your life. I was also very bright in school, though I believe not so much as you. I also am very hesitant to visit forums for schizophrenics, thinking I'm saying all the wrong things or killing people off, in small or large ways, though I worry more about the harm I'm doing to myself rather than to the other person. I have been anorexic in the past, though not for the same reasons as you (I don't think.)
I can identify with what you describe well (as you do almost always) in what you wrote above starting with 4:00AM. Thanks for helping me identify myself. I pick up bits + pieces here + there and paste them on me, sort of like your paper maiche doll and that is me - even though I may be just made of paper.
I have been living pretty much out of the system for the last 30 years. At one point I decided not to be hospitalized any more + I havent. Reading the book 'If you meet the Buddha on the Road, Kill Him' was a turning point in my life. I decided to live my life as a human being rather than a mental patient and find my own place in the world whatever that might be. And I have - prettymuch living alone + doing creative things that interest me. I now live in a highrise + am on Social Security + see a psychiatrist twice a year for meds. I have consistently taken my meds for over 30 years because although there are side effects I'm more comfortable on than off them. And the side effects have 'improved' over the years.
I'm not sure why I included the last paragraph, but I did.
Your entries very accurately describe whatever you might be writing about. I think they are very good 'fodder' for a book to speak for yourself and other schizophrenics. Thanks for giving voice to many things I haven't put into words myself - but that I recognize as true for me also. Your words are true. Barbara
Posted by: Barbara at February 21, 2008 11:39 PM
Hello Pam,
I would love to own a beautiful bead or stone necklace of yours, maybe in golden jade and the lacy blue agate, just shorter than opera length, a longer necklace of light blues and greens. But if you could do amber, all the more better.
E-mail me privately about a "barter," since we can't talk publicly about what I propose.
On another note: years ago I sought to get copies of my hospital records, and St. Vincent's never replied to my request. Funny, did they have something to hide? I have the discharge papers from my second hospitalization, and it said, merely, "agitation - psychosis."
So I, too, have no way to construct what happened. My first psychiatrist was the one to give me the diagnosis of schizophrenia.
When I was first hospitalized, in the fall 1987, I wasn't educated about what happened to me. I was handed a prescription for pills, and the number of the psychiatrist to schedule an appointment.
As God is my judge, I have no doubt I had schizophrenia, and have it to this day.
Your blog entries inspire me greatly.
Please, contact me about "bartering" for your jewelry.
Regards,
Chris
Posted by: Christina Bruni at February 6, 2008 08:30 PM