When is Schizophrenia not Schizophrenia? To Be or Not to Be…

Rossa Forbes wrote a fascinating article at the Mad in America website  —  see my permanent link — about her son’s schizophrenia diagnosis and his on-going recovery from treatment.  One thing among many struck me. She freely admits that when she learned his diagnosis, one of her reactions was to treat her son as if he were feebleminded. Not all the time, but you know how it is when someone seems out of touch or  unreachable, it isn’t difficult  to feel that maybe she or he really has lost a major portion of intellectual capacity…

But I don’t want to paraphrase, so rather than copy and paste Forbes’ piece here, I would prefer to link to it so you can read it for yourselves. While you are there, check out some of the other Mad in America stories by clicking on the Home button. Mad In America is an incredibly interesting website, and an important one. It has changed my thinking, encouraging me to continue my own investigations, pursuing thoughts that no one has ever before “permitted me.” Sometimes this feels scary even to me, dangerous too. Breaking one’s chains and shaking them off can indeed feel scary, no matter how badly one wants freedom. The only cure for it is to take the first step forward unshackled, breathing freely.

http://www.madinamerica.com/2012/06/holistic-recovery-from-schizophrenia-a-mother-and-sons-journey/

Already I have cut out one of my chains, my medications — lamotrigine–  without detrimental effect so far.  It has been a week and the one thing I was scared of, a return of the olfactory hallucinations, has not happened. I think I worried for nothing.  I still take another anticonvulsant, so as I suspected, the lamotrigine was probably overkill. Why was I on it in the first place? I do know that I never needed lamotrigine as a “mood stabilizer.” As I recall, some doctor switched me to it from valproic acid or carbamazepine which I was taking initially for the hallucinations, caused by temporal lobe seizures. He thought I was taking an anticonvulsant for mood stabilization, and never consulted me, and so from then on it was simply assumed by all the hospital personnel that lamotrigine was primarily a mood stabilizer…

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I am wondering about my post title. I chose it thinking about Mad in America and Rossa’s Op-Ed. And yet, she did not necessarily disavow the diagnosis, just the medical model and the treatment. At least that is how it appears, since the title of her book-to-be uses the word schizophrenia…I myself would prefer throw that baby out with the bathwater and reconsider the whole affair. Instead of trying to resuscitate a lifeless baby, perhaps we should recognize that the plastic baby doll was always lifeless, and start casting about for something real. What I mean by that is, maybe there is absolutely nothing to the notion of schizophrenia. Is it possible that we all believe there is something there, when there is nothing, nothing at all? Am I crazy to say this? I do not deny suffering. I do not deny that I myself experience phenomena and feel things and hear things and suffer. And I certainly do not deny that others feel and hear and see and experience things. They certainly have their experiences. But, and this is the heart of the matter: Just because we have these experiences, does that mean they constitute a construct, a real thing, an entity, an illness per se? Why? Why can I not have these experiences by themselves without them having to be something, without them having to be an it?

I am serious. If we did not make all these experiences into something, if we did not scoop up each little experience and mash them all into one big Thing and wrap it up and label it bad, bad, bad, and then hand ourselves over to the psychiatrists to diagnose and treat and to Big Pharma to medicate, not to mention Big Insur to rob us blind for doing nothing, if we did not allow all of that to happen because we decided that our experiences were valid experiences, not invalid and sick, but honest and real experiences that needed to be honored, taken seriously, not scorned or contemned, what would happen?

Wow, I wonder. I wonder.

Psychiatric Crisis Intervention: How to Avoid Restraints and Violence

 

*Note that when I write of a psychiatric crisis, I mean a patient who is not actively on street drugs. I cannot speak to any situation where someone has been taking unknown quantities of unknown chemicals. In such a situation I have absolutely no experience.

That said, I would like to tell you a few simple things about dealing with an unarmed, undrugged person who seems agitated and paranoid. It is true that I speak of myself, but I believe that the only difference between me and a two hundred fifty pound man, is only size and the fear factor. I think that there is no reason on earth why he would not respond to the following interactions just as well as I know I would.

First all of, remember that the person you are dealing with is indeed agitated, and is if paranoid  by definition terrified. Keep that uppermost in your mind, because everything you do will be evaluated by her in terms of what threat it poses. If you frighten her or threaten her, she will become much more  unpredictable, and the probability of violence increases enormously.

Never approach such a person with a show of force.Not even if she is being “loud” and disruptive. You gain nothing by such brute force methods, and you lose a great deal…Ganging up on a patient who is paranoid only puts her in the “fight” mode. After all, she is already frightened and you have cut off her only perceived avenue of “flight.”  Why  escalate a crisis situation, making it worse, upping the potential for a violent response. If the situation has already devolved into accusations, yelling and swearing — all three signs of increasing anger and desperation — that is a signal that whatever you are doing is making the paranoia worse; at such a time the best thing to do is NOT to worsen the situation by pushing back, responding with equal anger, and making demands and ultimatums. No, instead back off and WAIT. The person most likely has not had access to a weapon or anything to hurt herself or others, so patience is a virtue and can be put to good use here.

Usually a patient who is paranoid will not do anything of her own accord but try to escape the situation. But if you force the issue, if you prevent her from escaping to a comforting place or from her own feelings of fear by permitting her what she needs to calm herself, or worse, attempt to do something to her that she could perceive as an attack – for instance, if you try to force medication, or grab her or simply threaten her with a group of staff or guards approaching en masse, you may very well provoke her to respond as anyone would when attacked, i.e. with self defensive maneuvers.

Why be surprised, when several people try to rush her and grab her to hold her down for IM medication, or simply gang up on her in some misguided attempt “to calm her down,” if she then responds with apparent aggression? After all, it is several of you against the one of her and it is surely understandable that she feels threatened. Her life feels in danger and in such a situation all bets are off as to what she thinks she must do to preserve her safety.

If you really want the situation to end well, refrain from threatening or attacking her, no matter how impatient you may feel. Instead, choose one calm, unthreatened and unthreatening person, preferably of the same sex or somehow compatible with the paranoid patient’s personality, and have that person approach to a safe distance (safe for the paranoid patient, not just “safe” for the staff person or for lack of a better term, “negotiator.” The negotiator is safe so long as he or she does not threaten or attack the patient, who is much more frightened than the negotiator.

Approach to a safe distance and possibly sit down, calmly and in a relaxed position, so that she understands that you are not scared of her but also not angry or threatening. If necessary, you might indicate that the patient is speaking too loudly for you to hear her, or too rapidly, but that you are there to listen and talk, when she can lower her voice or slow down. Do not speak loudly or angrily yourself. Talk about anything at first. Don’t talk about the patient or what is going on and do not argue or demand. order or talk  about your expectations of or for her. Try to talk about calming external things. Does she like nature, art, sports, reading? Is she cold? Hungry? Can she take some deep breaths? Maybe she would like to sit down now, too? Finally, when she can, would she like to tell you what is going on? There is plenty of time, no hurry. It is important to find out what the problem is…

It may be you fear that she will attempt to self-harm or hurt someone impulsively. If the latter, keep everyone a safe distance away. And emphasize the possibility of violence so that they will stay  away until the all-clear.  Then talk to the person in a soft voice and gently remind her that you know she doesn’t want to hurt anyone, not even herself, that she is already in enough pain…What does she need, right at this very moment, to help her feel better? Then negotiate a way to get it for her, or something that will do as a substitute or an approximation.

It isn’t that hard to negotiate a calm solution to this sort of crisis, without violence or retribution, when you don’t threaten the person and are truly on her side. But you must never lie to her or to swoop down upon her immediately afterwards to put her in restraints. The point is to bring the crisis to a peaceful resolution. It is not a contest you must somehow win, and then punish her because you were scared and got angry. Exacting retribution  is unconscionable and if that is your impulse you need to have a talk with your supervisor. Negotiators and other employees who do such things need to be reassigned to other areas or other jobs. They do not belong in crisis intervention settings.

Now I am certain that you can think of other scenarios where four point restraints are absolutely essential. If so, I would like to have you describe one. We can discuss this because I am becoming more and more convinced that Seclusion and Restraints CAUSE more mental illness and suffering than they relieve. How would you feel if you found out that by putting a patient in four point restraints even once, you may have caused enough  trauma to induce more self-injurious behavior, plus PTSD? I believe this happens. I also believe that it is terribly dangerous for the sense of self and the self–esteem and the relationship between the patient and ANY  health care provider of any sort at all.  I see nothing good to come from restraints. NOTHING. I do not even see them as providing safety, not in the long run and scarcely in the short run since those who are restrained tend to become more violent not less. Why will people not learn that the “catch more flies with honey than vinegar” works with people in every instance?

But talk to me. Let me know what you think. A confession:  I once wrote an Op-Ed  for the biggest  state paper around her that suggested that restraints could be an okay form of treatment if patients were taught to ask for them voluntarily! (I cring just thinking how I toed my sister’s “party line” about the helpfulness of restraints. She learned that sort of thinking from being the attending psychiatrist at Y__ Psychiatric Institute where they taught patients to ask for wet packs or to have their wrists chained to their belts all day long… The difference between us is that she still believes in that sort of  brutality.)

“The Scream” plus an update…

  
In the midst of re-experiencing trauma, sometimes all you can do is scream, even if it is silently and only in paint…I hope this speaks to some of you who may feel as I do, often or even just once in a while. It took a lot to get this out, but I felt I did convey what I felt.

I am reposting the next one, a very painful if a not very skilled drawing, because I made some changes. I put a very mean smirk on the face of the woman in the front, who is meant to be facing us and pointing over her shoulder, though it was hard to get this in, given how little space I’d left myself… Also, I wanted to change the face of the man kneeling on me, and strength the look of the grip of the hands on me. If you compare the old version to this one, you will also note that I am purely naked here where as in the other, I have underpants on. This is the accurate one, but I didn’t understand that at the time I started the drawing. Alas, or perhaps this is good, I am rapidly recalling things I had not for two years about my experience at Middlesex. At least I remember stuff that happened BEFORE April 28th. For the other two restraints incidents, I still have no recall whatsoever or what I suspect is mostly confabulation drawn from what I read in my chart, though of course I cannot be certain. In any event, what I am remembering is not good at all, and I cry a lot…it is very difficult, and I feel so very very alone, because NO ONE understands and can talk to me, or more to the point can even stand to listen to me talk or cry about it. But it is difficult even to keep it under wraps all the time. If you have survived trauma, I think you know how it is. And that is why I avoid people when I think I cannot be “good enough company.” I don’t want to bring my friends down, but I cannot control the tears and shakes when they start…But the picture forthwith. Although it is disturbing as is, be aware that in the real incident, there was a great deal more violence, and more guards and staff members involved…these are just a paltry few. I simply didn’t know how to draw a crowd or a crowded room yet!

This is the incident before they used 4 point restraints on me that I so obsessively describe in Wagblog…Of course I take some poetic license with drawing the bed there and at the ready, as it was not there or ready or even in that room and I was quite calm and certainly no danger to anyone by the time they decided to punish me 
Takedown on N-7 Prone Restraint Detail: Me, naked — and this is a hospital?

This next picture I did as an attempt to express the guilt and shame I feel over having been traumatized at all. But I do not think I succeeded at all. Why? Because it became too intellectualized, with symbols like the Scarlet A and the guilt-crucifix, and even the hands wringing in shame, rather than pure expression…I want to do it over again if I get inspired to do so.

Shame Guilt and Ghosts is my attempt to portray my feelings of guilt at even having felt traumatized by so small an injury…but this doesn’t do it successfully, not so it seems to me at any rate.

The next three drawings were just “fun” or for practice ones. The first two are presents for Tim, simply because he likes cars and is so wonderful to me. The third was an exercise in drawing two people together, and was copied from an “old master”, the name of  whom I simply cannot recall at the moment. It might have been — nope I don’t dare guess! I would have to get up and search for the book, and I ain’t gonna do that at the moment — too danged lazy. Anyhow, here are 1) two  1973 Volvo Sportswagon ES 1800 2) jaguar XJS and 3) the sketch taken from the old master’s painting.

1973 Volvo ES 1800 with British Racing Green “colour” in the background to represent the color of Tim’s car.

My third car drawing for Tim, a Jaguar XJS (I forget the date but I believe it is the mid 80s (if I am not mistaken).
Herr Goose after revisitation for repairs…Click on the photo to make a close up and you will notice neck “feathers and the difference it makes with old fully decorated version.
I sketched this detail from an old master’s painting found in an art book. Wanted to capture the two women together, and the angle of their heads (I actually didn’t do a very good job but there you are!)

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NOTE: As I wrote this, “dream” talk, that is to say, nonsensical writings seemed to keep appearing in the middle of what I wrote. I seemed to find myself in another world every few minutes. I would write about that world, then “come to” and start writing about the subject below again as if nothing had happened. But when I reread the paragraph it made no earthly sense whatsoever, being an amalgam of two entirely different trains of thought. So a caveat: if some of what follows devolves into gibberish at any time, forgive me, and be patient. You can email me to alert me, if you wish, that would help. But otherwise, know that I will eventually come back more able to proofread and catch such idiocies…and fix them. For now though, you are on your own.  (The reason for these  brain blips, I think, may be, but may not, the  fact that I took a very small amount of Zyprexa today in order to be able to read and concentrate. 2.5 mg 2X a week should not make me gain weight, according to Dr C, But we thought it might do some good, without doing the usual harm. So I agreed to try it out once more, just at the minimal level as a PRN. Well, I find that I am very sleepy, have been ever since I took the pill, except for when I took a walk and for about 1/2 hour afterwards…and I do think that I slip into dreamworld while awake, and literally dream while writing this. Hence the gibberish.

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I have put the statement I read to the CEO and various administrators etc of Middlesex hospital on Youtube if anyone is interested in hearing it read outloud. Do a search for “Psychiatric restraints and seclusion abuse” and you should be able to find it if this link doesn’t work:  http://www.youtube.com/watch?v=vhZybDwMbzA  (I realize that I read it without much feeling, but it is hard to do so accurately and also look up at camera, and read without losing my place. Anyhow, it might be worthwhile to check it out.

The newest sorta development in the “case” this week was that a lawyer from the hospital, or someone who told my advocate he was a Middlesex Hospital lawyer, asked Wiley R (who is behind me 100%) “what does Pam want, what can we do to have her drop the complaint or withdraw her complaint to the DOJ and Joint Commission?”

Now everyone I told this to almost to a one, and immediately said this meant, “We are willing to pay handsomely in order to buy a gag order from her” I had trouble digesting such crassness, but to a one, those to whom I related the words of this inquiry told me the lawyer was insinuating something about paying me off. I mean: money. I felt slimed, completely slimed. For a few days this was the sole topic of my conversation, but to make a long story short, after I had decided to ask for several sessions with the hospital psych unit staff, educational sessions with me, to teach them how better to deal with patients, and have them experience forced restraints themselves…and so forth, my brother and I met with WR my advocate from the Protection and Advocacy (for persons with disabilities and mental illness) Office, and he informed us that the lawyer really was offering nothing, not even an official apology. Clearly, if so, then my real desire, to do hands on, face to face work with the staff that had so tortured me, was going to be out of the question, utterly forbidden. So we just decided in practically the same words, to let them “swing” in the wind.

In point of fact, when WR said that the DOJ might bring them up “on charges” if it was warranted, I asked him why I didn’t do that myself. He looked at me, and then narrowed his vision looking at a point beyond me. “Hmm, let me ask around and I’ll see what we can do.” I hastened to assure him that it wasn’t malpractice I was after. I knew that I had no real case, even if the statute of limitations hadn’t just run out a week or a few weeks ago. After all, what lawyer is going to take me on  one a contingency basis, and what jury would find for me in any event, seeing as how I did not die in their “care” nor suffer “grievous BODILY injury” which of course is all that counts…as usual. I am not sure what sort of case I would have in any sense of the word now at all…But as I told him, that is in his hands, and certainly is his bailiwick  (and if not his than that of  my lawyer-friend, Sharon Pope’s. If there are other “cases” to be made of any sort, I am more than game, I am ready and on alert to go and do whatever is needed in the pursuit of justice and reform of the Middlesex Hospital psychiatric system. It was really shameful, and despite the Public Health Department’s so called investigation, it was such a shameful joke, that despite WR’s impassioned plea to investigate MY case, and the psych unit in particular, they did no such thing. All they did was go back to spring 2011 (ie looked at the records of the entire hospital, or one of two representative records from most of the units, except for Psych so far as I could determine…) and do a random case study to look for general evidence of irregularities. Sure, they found some, and one case even involved the ER use of unnecessary or at least excessive use of restraints in a dually diagnosed young man…

But NOTHING was even looked at that had anything to do with what they did to me, or even the psych unit in particular. NOTHING was specific to my complaint, so I don’t know how they expected this  evaluation to give them any sort of reasonable results. They may or may not have censured or sanctioned the hospital. I did not read the entire huge file of support the bill got over the years. But I got the drift and the worst punishment meted out for repeated violations seemed to me to be a whipping on the wrist with a flimp ramen. Period.

Yet I was punished by the psych unit staff time and time again.

I know, I know! I was loud, I was angry, I was impossible to “handle” — I know this. Partly this was par for the course for a Lyme disease flare up for me. But I think Lyme wasn’t all of it. Why else was I so irascible (aside from them giving me Abilify without the requisite Geodon…) if not in response to perceived and real threats from them? I am not generally irritable and snappy at Natchaug, and never was at Hartford Hospital in the 80s and 90s. ONLY at hospitals where the standards of care are coercion and control and abuse is the name of the game do I react with anger and hostility…I wonder why.

More to tell, more to say, but as I wrote in the first paragraph above, sleep is overwhelming my desire to do just about anything. I will try to get back to this asap.