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.
WAGblog: Dum Spiro Spero 
When I was diagnosed with schizoaffective disorder I cried. I had been hearing voices and my biggest fear was that it was schizophrenia… then he tells me I’ve got schizophrenia + bipolar!!!
I had a lot of hangups about what I thought schizophrenia was. I didn’t even understand about “negative symptoms” until months after my diagnosis. In fact those negative symptoms have been the most disabling. The positive symptoms I get are mostly more like what you’d think of as bipolar not schizophrenia.
Anyway: that’s a great post. I think schizophrenia must surely be one of the most misunderstood conditions in history 😉
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Pam, I suspect that you are like at least half or more of people who have gotten the “S” label. My son, for example, is a truly gentle soul who tends to rely on the opinions of others and takes absolutely nothing for himself. If I weren’t telling him that the label is all wrong, that he doesn’t need the meds, that he should expect more for himself, well, I’m pretty sure he wouldn’t advocate for himself. I’m sixty now, and it’s only been in the last few years that I’ve become clearer about what I want out of life.
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Thank you so much, Rossa, Marian and Suzanne. I spent a lot of time tonight checking out your links and will do so some more. I wish I could read with a bit more ease…It is so hard to have to slog slog slog…and get so little done. But I want to make some more links to those sites to post here as well. You have helped me immensely and will help illuminate many who read Wagblog as well, I should think. It takes a while to break the first fetters, to understand that the fetters are breakable, that the bonds are paper not iron. So each person has to discover that fact him or herself. I don’t know how you can teach a person to know herself the way you did, Marian, or to have the rebelliousness and resilience that you naturally had. I certainly never did. Here I am, 5 months shy of my 60th birthday and it is only now that I am questioning received wisdom..or feeling that perhaps I have a right to feel my feelings and not be told how to feel or what I have to do. It is a very compllcated situation and always was. Because I needed help just to live. I could not have survived or made it on the streets on my own. It was not a matter or sinking or swimming — that is, a test that I would have passed. No, I would not even have taken the test. I would simply have — reneged. I, I, I, well, I dunno what would have happened, but needless to say, that was part of the problem all my life: that I could not cope with “making it” and had no one to help me figure it out. Welp, That needs a ‘nother whole post to explain, so I will leave it there. But I really appreciate your comments. I will be reading as much as I can in the next few weeks and writing more soon about all of this.
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“what would happen?” I think, maybe we would have a chance to move on and actually learn something from life. Both the labelled, those who label, and everybody who accepts the labels as valid. As it is, with these labels regarded as perfectly valid by the public, we’ve efficiently cut ourselves off from learning anything from our life experiences.
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Pam, thank you for your thoughtful post. You are not alone in questioning the usefulness of the schizophrenia diagnosis. There’s an organization in the U.K. that exists to question the validity of the schizophrenia diagnosis. Here’s a link.
http://www.schizophreniainquiry.org/
Keep questioning and writing!
Suzanne
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Hi, Pam,
Thanks so much for giving my article wider currency. I’ll explain about the use of the term schizophrenia. I continue to use that term because it is the only way I know to reach out to parents who have been given that devastating label. They need to find help as quickly as possible and that’s the first word they will look up for help. Despite the fact that I think schizophrenia is a garbage label — there is no medical proof of the existence of a disease, it is only a “disease” in the sense of coping with life — it is what doctors label a set of behaviors. In that sense, my son got the correct “label.” He wasn’t depresssed, he wasn’t manic, he was profoundly withdrawn and behaving very strangely. So, yes, he got the label more accurately described his behavior, but there is no basis in science for the label, and the “treatment” prescribed by the medical profession for the label was pretty useless. Don’t know if I’m making any sense.
I really appreciate your writing and thinking skills. I’m planning to repost your blog about how to talk to someone in order to avoid restraints.
Thanks again, and have a wonderful day.
…Rossa
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