This is from a 2011 entry on my About Schizophrenia blog. However I have changed it and updated and added to it, so I thought I would post it here. Dunno how many of my wordpress readers might not have seen the first version at all. I have also added a discussion of Xyrem, my sleep medication to the “mix” as I consider it a “minor miracle” that has been underreported and never before used.
Okay, I admit it, I have had my conflicts surrounding schizophrenia and the issue of medication — whether to take it, when to take it and what, if anything, I will take. In fact, I admit that this remains an issue, though less of one so long as there is a medication that I find inoffensive. But more on that later. First let me address the problem of that conflict itself.
In the “old days,” which is to say, during the 1980’s and early 90’s, I was treated with the so-called “typical” neuroleptics like low-potency Thorazine and Mellaril (in doses as high as 1500mg which left me with an eye problem known as chorioretinopathy, which activated once and could reactivate at any time and potentially lead to blindness…). I was later treated with high potency, lower dose drugs like Haldol, Trilafon, and Prolixin, either orally or by long-lasting depot injection. Although I was compliant with these meds for a while, I eventually found them so troublesome that while hospital doctors insisted they “helped” me, more often than not I would take them in order to be released from the hospital, only to stop them again.
This became a pattern that led, familiarly, to what was called the revolving door in and out of psychiatric units. While I understood this only vaguely, I found the dulling side effects, not to mention the physical discomfort of these medications so terrible that even if not taking them meant yet another hospital stay, nevertheless I often refused — in fact I could not bear to take them despite the psychosis that resulted. Had anyone bothered to ask me why, I would have told them that the drugs’ side effects were simply worse than the illness; they were hell and there were no two ways about it.
All the hospital staff and outpatient doctors and nurses believed that no one could possibly wish to choose “madness” over mere drug side effects, but I was someone who frankly preferred the former to the agony of the latter.
Now, while I speak as if I knew I was psychotic, that is not altogether true. All I knew was that I was being hospitalized a great many times, that I had been told that if I took the pills I was given, I would be able to stay out. I did not at the time believe that I had any illness at all, and did not for a very long time believe it. However, what I did want was to avoid the often brutal treatment of various hospitals, and their use of four-point restraints, sometimes for days at a time, spread-eagled tied to the corners of the bed, in the 90’s , and that was what sometimes persuaded me to take them, not the understanding or agreement that I was ill.
But surely I was not alone in feeling that the side effects of the meds were worse than the consequences of not taking them. There would not be so many people with schizophrenia who like me refused them, if so. Whether I believed I was ill and needed to take medication or not, it hardly matters when the pills I was given caused unbearable pain, or so deadened me, I felt, that my life was scarcely worth living…
I know those meds in particular– the older drugs both lower potency and higher potency, at almost any dose, caused me physical side effects and physical suffering. That alone was enough to make me ambivalent about taking them. What I never knew, and still do not really know for certain, was whether the drugs themselves emotionally deadened me, or whether what I came eventually to appreciate might in fact have been illness after all was the cause of my feeling deadened. Did I lack enthusiasm and passion because of the illness or because of the medication side effects?
Through the early 90s, I was on Prolixin as the least distasteful anti-psychotic, and having been more or less forced to take the long-lasting depot medication, I could not “stop” taking it, not once my weekly injection had been given. Then finally, Connecticut’s Medicaid program started paying for Clozaril, and I was among the first people in the state to try it. All went well at first, and I seemed to be off to a good start. But unfortunately, once discharged to home, “all hell broke loose” with devastating side effects that were if anything worse than anything I had experienced on Prolixin or any other older neuroleptic. This may have been unusual, I do not know, but I had horrendous and immediate side effects: sensations of impending doom that made me afraid of falling asleep; then an inability to swallow even my own saliva; a kind of uncontrollable jerking, seizure-like, while I was conscious; and when I was awakened — nearly forcibly — in the morning, I experienced an unbearable sedation that took hours to wear off…
I gave the drug several trials, but I was not disappointed when I developed a very low white cell count and was no longer permitted to take it. After that, it was back to Prolixin, and back to what had never really lifted, not even with the so-called awakening miracle drug of Clozaril: the deadened feeling. I felt hopeless, as if nothing would ever really work better for me, but then again, why should it when I didn’t really suffer from an illness like schizophrenia to begin with?
My therapist, the one who had tried me on Clozaril so many times, left her practice, and I was shunted to a nurse-therapist at the Clinic, one who took an immediate disliking to me. I felt a similar antipathy for her and so with no love lost between us, it was a huge surprise to me when, after she gruffly suggested I try this new drug, called Zyprexa, that I woke up only a few days later feeling, well, not only awake and better, but awakened. Awakened, alive, even reborn. I could read, I could remember what I read, I could study and I felt enthusiastic about it all in a way that before then I could only dream of.
Oh, I knew that I wanted to feel that way, but it had literally only been a dream or a wish before then. I had been vaguely hungry for this, but until I took Zyprexa, it seemed that I had been completely unable to grasp or fulfill my wish to do any of it. On the drug, I could pay attention and concentrate for longer than I had in decades, and learn things and retain what I learned. I felt that I had a whole lifetime to make up for, and started to make up for lost time. What is more, I was so confident in my ability to read and study now that I had found a drug that helped me, it seemed entirely possible to do so.
Why do I tell you this? Because while Zyprexa was the real miracle drug, a medication that did not so much give me back my life as give me a life I truly never had, it was, as I may have said before, also the side effect drug from hell. As I would soon discover, my weight started to increase almost from the first week, and it kept going up and up, despite my longstanding history of strict weight control and a vegetarian diet. Also, it is a very sedating drug, so that I had to fight off sleepiness that added exponentially to the sleepiness that my narcolepsy had caused for years.
Luckily my psychiatrist soon thereafter was also a sleep specialist; she had no problem treating this with the appropriate drug, Ritalin, and so it was not the problem it might have been, but the weight issue was, and is in fact, one of the reasons I have on-going conflicts over taking that particular medication.
Side effects of any sort remain 1) the major reason I will not take a given medication, and 2) the major reason I do take the medications that I take. If this surprises you, let me explain. First the latter: Of my present medication regimen, the salient ones for this discussion are Abilify and Geodon, and I take them not for the reasons my psychiatrist may have prescribed them, but for their “side effects,” at least as I perceive them. For instance, it was only once I started taking Abilify combined with Geodon — I could never tolerate Abilify by itself — that I found myself able to do art, and to write so fluently and so abundantly as to be unable to stop once I start. In fact, I call these two my output combo, medications that make my creative productivity enormous, whereas Zyprexa is just as literally my input drug, my intake drug, insofar as I can read and absorb information, and also eat, eat, eat.
For the same reason, though, I will not take Zyprexa because of its intensely dispiriting side effect of causing obesity and with it diabetes and and the concomitant conditions that go along with that. I wish I could take it: I miss reading terribly, miss the heady feeling of intellectual confidence and the ability to learn and remember and such.
Unfortunately, despite my early paean of praise for Latuda, I have to admit I have reconsidered it, as I found that though I cleaned my apartment regularly, I slowed down on my drawing and writing, and at the same time had not found myself interested in reading, nor even in watching my usual documentaries…It felt like a kind of straitjacket. I had weathered the psychotic crisis, but after that its usefulness seemed to be limited, and limiting. I agreed to take it, if necessary, in a crisis, but aside from then, I did not find that it helped beyond attenuating the worst symptoms.
Actually, in the two years since i took Latuda that one time, i have come to believe that the drug did little or nothing for me. I think that i simply managed to pull myself out of a bad time by myself… It can be done, and most especially when i am not facing that critical six month vulnerability time. And this was in fact in between the six months – during a period of relative strength. So my sense is that the latuda functioned mostly as a placebo, and that i myself pulled myself out of trouble.
In truth, given my druthers, in a crisis and forced to choose between one hell versus another, I might prefer Zyprexa over Latuda, since the benefit of the first outweighs the complete lack of any positive benefit from the latter. Which is to say, even if both happened to treat psychosis, only the Zyprexa has any positive side effect in addition to that. Latuda only has the negative side effect of strait jacketing me in the process.
The next two paragraphs were in my original post…i keep them as is here only so that i can follow up with a “but now” discussion of how things have changed:
One other “benefit” from taking Zyprexa, discovered within just the first week or so, was the realization that a medication made a difference, a huge difference. The conclusion I began to draw from this was not so sudden, and it was reluctant, but eventually I had to decide that perhaps, if a medication made such a radical difference, and a medication, Zyprexa, supposedly “treated an illness called schizophrenia” perhaps, whether it was schizophrenia or not, I did have some illness. Surely, if this medication, which did not help most people, made such an enormous difference for me, it must mean something…
I was reluctant for a long time to answer that further, and still cannot say a lot more without cringing. But if indeed there is a real entity, a real singular illness of schizophrenia, as opposed to a syndrome, and if Zyprexa really is a treatment for it, an effective and appropriate one, then god bless it, I will accept the diagnosis. I might still refuse to take the drug, but I would accept that I have the illness and continue to say that Zyprexa was the best miracle drug from hell I ever took!
But now i still cringe and cannot use the word schizophrenia without wanting to say, Psychiatry is an art of making an opinion…and even more often of making judgments. Two worse things to base a field of so-called medicine on i cannot conceive. Yes, Yale diagnosed schizophrenia, and did NOT decide to diagnose a personality disorder on top of it, which was, truth to tell, a huge relief*, because I KNOW that it is only the abusive hospitals that do that, and they diagnose an Axis II disorder largely to blame the victim, blame me for PTSD behavior that they induced! You simply cannot seclude or 4-point a vulnerable patient, viciously and brutally, and expect that person not to respond with traumatized behavior, which is predictably unpredictable…But can be described and has been.
In any event #1 how interesting that Hartford Hospital, in the 90s, when it was independent of the IOL, and often kept me for months, never saw any personality disorder in me when Sharon Hinton was head nurse…ONLY “schizophrenia, chronic” as I would read upside down on my admission papers. Personality disorders are lifelong and chronic. You do not suddenly develop them midstream in your life. It makes NO sense that Hartford Hospital as the IOL would now suddenly “detect” an axis II borderline disorder that they never did before. No, in fact, what happened was they traumatized me, and then blamed the victim for TRAUMA behavior…Or actually, for no behavior at all, since I never even resisted the restraints except once. And then the last night when I screamed bloody murder. And I did not even know that I would be released the next day. That was purely chance…and good luck.
In any event #2, I also took Zyprexa at Yale Psychiatric Hospital in February and March, and this disturbs me, because while I did some reading, my art output was tremendous as well. And Zyprexa was supposed to be only an INput drug. Of course, I gained ten pounds in two weeks…Worse, ever since I left, and got back on the Abilify and Geodon, and am taking NO Zyprexa, I haven’t done a thing, no poetry, no artwork of any sort. Not even a single trading card.
I do NOT believe in schizophrenia, not for me at any rate. I do not think I even need Zyprexa. But on the other hand, I wish I could take it, because I feel so much better when I take it and I do not know why. I mean, even when I am not fighting voices, I feel better on it. WHy is that? That doesn’t make sense…You should only take Zyprexa for symptoms that’s what I have always felt. Once the voices go away, forget it. Yet, yet, yet…I know my brain works better on it, and always has. It doesn’t seem fair. (Not that life is or should be fair…But I mean, really, my single most hated drug in the arsenal, and it is the one that works best and not only that it works really well…???) CRAP! My biggest fear is gaining weight. I understand how petty that is, and I should be bigger than that spiritually, but I am not. I simply cannot do it.
So there I am, and that’s the picture. Now you know how two-faced and hypocritical I am about medication. I tell people to take theirs. Or not. And I wont even take the one medicine that I know helps me, because it will make me fat. That is really the only reason I do not take it. The only reason. It is that petty, and that simple. But that impossible.
One additional drug that I take now, in addition to Abilify and Geodon and Ritalin is Xyrem, sodium oxybate, an anti-narcolepsy sleep drug, that helps me get delta sleep at night, slow wave deep sleep and to need less Ritalin during the day. As far as I am concerned the less Ritalin I take the better. I have never liked needing it or taking it, but I have always needed it just to stay awake during the course of a normal day. I haven’t gotten through a single day without several periods of sleepiness since college, when I would fall asleep at any time of the day, very unexpectedly.
Now that I take Xyrem at night, twice a night, though, I need fewer pills for alertness during the day, which is great. I also find that my appetite is vastly reduced, which might help with the Zyprexa, except that I could not take the two drugs together, as they are both very sedating and cannot be combined…What it does do is prevent any confusion of dreams with reality. I simply do not remember any dreams, and do not confuse the two any longer, I do not know why. I am not sure if this effect would hold true for all or if it is just for me. It is possible that dreams would increase for others. I only know that I used to have a huge problem, before the Xyrem and the other meds, with nightmares every night and being unable to tell dreams from reality…but now that I no longer dream I simply have neither problem at all.
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*A huge relief: When I write that I am glad and relieved they did not Dx a borderline personality disorder, I must tell you that I am aware that in the hospitals where I have been abused, they dx such Axis II disorders as a way of communicating to all the staff that a patient is “manipulative and devious” and basically you cannot trust anything they say. I KNOW this to be the case because I have two psychiatrist siblings so I have gotten the lowdown, ie the truth about such terms in hospital REALLY mean. And to be called “A Borderline” in a hospital, is not a good thing. It is shorthand for being called a Royal Pain in the Ass.
Now, having Borderline Personality Disorder is something different from being called A Borderline…And having the disorder means you are suffering a great deal ALL the time. But in the hospital, when they claim to “suddenly detect” borderline personality, it is something wrong with the hospital, not the personality. And my point is that when they have brutally secluded or restrained a patient, that is NOT the time to suddenly be detecting anything except iatrogenic PTSD…
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Thanks for posting Jacqui.
The Guardian article and story about the little girl pathologised by psychiatry and her father was harrowing to read and think about. I remember it being promoted before. Like a circus act in bygone days but more sinister and scary. Subjecting a child to these strong psychiatric drugs it’s a wonder she can function at all.
It’s encouraging to hear of the Hearing Voices movement’s work, Chrys
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Thanks Chrys.
This story is horrifying and aside from Jani’s ‘treatment’ one wonders why her family and the professionals working with her think it is acceptable to invade her privacy in such a way. That in itself disturbs me, never mind what else she is being subjected to.
To counter-balance such a disturbing story I felt it was crucial to highlight the work of the Hearing Voices Movement which offers such a humane and hopeful approach and a viable alternative for Jani and other children like her, who are suffering because of scary voices and visions. There is always hope.
Jacqui
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While reading “Blue-Eyed Tree Frog”, thing in the left side of my head said “cognitive dissonance”.
I’ve never heard of cognitive dissonance so I had to look it up to see if it exists. It does.
I cannot claim “cognitive dissonance” as my own thought. It distinctly is NOT my own. How’s that for a real-time example of mental hearing?
I don’t know if cognitive dissonance is “professionally” observed in Jani. I think it would benefit her greatly, and she would do remarkably well, to prescribe the treatment of: study linguistics. The greater her vocabulary becomes, the better she will be able to know and understand her own mind, and effectively communicate what she experiences to others.
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Interesting how those words came to you – from the collective unconscious perhaps?! – but I wonder who is actually suffering from cognitive dissonance. Is it 8 year old Jani who seems to be able to articulate and communicate about her frightening experiences so clearly, or is it the adults around her? How do they fail to see and hear the meaning in her experiences, rendering them a symptom of schizophrenia instead? I wonder if it is they who need study further…
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Brilliant. It wont be the first time that mental health services try to “treat” the child when they should be “treating” the parents or even better the whole social system that surrounds them.
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Couldn’t agree more – we do live in such a crazy world!
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I love Jani. I’m fascinated by her. I wish I could meet her and talk with her.
I believe in my heart that she really was born exactly as she is. I think her mind / psyche very much IS a real issue. I don’t know if I’d call her “schizophrenic” but I would call her Psychic (psychic, meaning – her psyche is distinct and remarkable and very active, obviously). Psyche is NOT a disease but that doesn’t mean it is always easy to live with. It can be outright brutal and even Hellish (such is life). There are various states of Psyche. An active one is *psychic*. It shouldn’t be so complicated.
If she is renaming herself, it seems that “cognitive dissonance” could be an accurate description of what she’s doing. I read that she HATES her name “January” – which I think is really significant and needs to be understood. SOMETHING is motivating her to find a new name for herself. That’s a big deal.
I don’t blame her family (or the rest of the world) for calling her schizophrenic. As of right now, people don’t know any different. Who could honestly deny the fact that she IS how she is? I can’t.
To be real honest, I resent the fact that people are trying to spin the “abuse” angle, suggesting that abuse or neglect is what is causing her condition. That is BS. There very well may be some of those issues, but the girl IS born as she is. I think she DOES have something “genetic”. I think she IS a genuine psyche-active person. I don’t see her as “sick” but I do see her as somebody who needs a LOT of support to know and understand what she “has” and how and why she has it. I see her as 100% GENUINE: whatever it may be, she’s BORN that way.
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I am not sure that people are trying to ‘spin’ anything, just reflecting on what comes up for them when reading and hearing about Jani and her treatment and providing factual information that has previously been in the public domain.
I appreciate your wish to not blame but seek to try and understand. However I don’t believe in schizophrenia. I think it is a damaging concept and that so called symptoms are reactions, often to traumatic or overwhelming experiences. I also feel deeply troubled by what is really going on here although ultimately, all we can all do, is speculate, muse, discuss…
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Let’s take a closer look:
http://www.thefreedictionary.com/schizophrenia
Do you see where it says
“2. behaviour that appears to be motivated by contradictory or conflicting principles”
?
Now let’s take that and pair it up with “cognitive dissonance”
http://www.thefreedictionary.com/cognitive+dissonance
A condition of conflict or anxiety resulting from inconsistency between one’s beliefs and one’s actions
It seems to me (with my very basic, uneducated intelligence) that “behaviour that appears to be motivated by contradictory or conflicting principles” and “conflict or anxiety resulting from inconsistency between one’s beliefs and one’s actions” are PRACTICALLY THE SAME THING.
For the record, I state and declare that I DID hear “cognitive dissonance” inside of my mind and did NOT previously know that term in ANY way, not even “unconsciously” or “subconsciously”. I simply have NEVER heard of “cognitive dissonance” ever before except FROM RIGHT INSIDE OF MY OWN HEAD, LIVE, AS I WAS READING. I was “brave” and “courageous” enough to actually type (publicly) exactly what I experienced (heard) inside of my “psycho”, “schizo” head.
Hallucinations CAN’T BE CORRECT. About anything. And if they are, it isn’t a hallucination.
Let the professionals look for “cognitive dissonance” in Jani. If they can confirm that, to support their schizophrenia diagnosis … hold on.
Is anyone truly interested in actually helping the child? Is anyone truly interested in UNDERSTANDING HER?
Let’s take it a step further:
What is her INNER CONFLICT? Here’s a clue: she HATES her name. She is RENAMING herself.
Why?.
The inner-world is a REAL place. Lots and lots of activity (on the inside). One more time: psyche is NOT a disease.
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In reply to mjk: “2. behaviour that appears to be motivated by contradictory or conflicting principles”. It “appears”. To any unengaged observer, like an mh professional for instance. It may also “appear” so to a parent whose need to himself appear as the perfect parent isn’t met by a child who reacts to the parent reflecting the parent’s imperfection. A psychiatric “symptom” is a reaction to life that is taken out of its context with life. Thus the cognitive dissonance doesn’t happen in the person who’s labeled with “mental illness” on the grounds of psychiatric “symptoms”, but in those who label.
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This story is all over You-Tube, too and it made me so sad I couldn’t watch the whole thing. I remember seeing this letter to Oprah a few years ago and thinking that this list of suggestions was great. So glad to see it re-posted here.
It’s sad to think how many creatives, spiritualists, or entrepreneurs in our society are being snuffed out by this stuff. I’ve had to do some grief work around this off and on. What’s helped lately is a Bible verse from Jeremiah about “He will restore what the locusts have eaten.” [No offense meant to Non-christians] Much of what I’ve lost to psychiatry has now been restored in my life. Hopefully we can build a way to do this more often for our brothers and sisters and step-children like this in bondage.
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This is such a sad story Corinna but as you say, it is important to remember that despite what has been stolen from us, transformation, restoration and healing is always a possibility…
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I’ve been following Jani’s case for a while and think her treatment with a mega drug cocktail and her exploitation by the media and her parents is unconscionable. The work with children who hear voices, on the other hand, is inspiring.
Jacqui, Did they ever receive a response from Oprah? And have you considered sending this letter to the author of the book (Jani’s dad) via his publisher? I do believe he wants to help his child — who I see as creative and gifted as well as disturbed — perhaps, perhaps he would listen.
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I agree that the exploitation of Jani is unconscionable. It is also heartbreaking that her creative attempts to survive, i.e. the voices and visions that she experiences, have been so comprehensively misunderstood.
Fortunately, healing alternatives do exist and the fantastic work of the Voice Collective project in London is a brilliant example of this, an approach that I sincerely hope will become more widely available to children like Jani and their families.
We never received a response from Oprah but as you suggest, it might be worth trying to send this letter directly to Jani’s father. Perhaps he would listen…
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Here is the family’s Facebook page: https://www.facebook.com/janifoundation?ref=ts&fref=ts
I resisted medicating my son for three years. Along with the voices, he had painful tactile hallucinations and frightening visual hallucinations. An array of therapists did not help. He is on meds now, which makes me very sad. However, he is no longer tormented by seeing demons cutting off people’s heads, for example. I’m hoping that the new therapist will be able to help him resolve this stuff. My guess is that Jani’s family is simply beside themselves, as am I. My heart goes out to them.
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I am sorry to hear about the awful time you and your son have been having. I have met and worked with many families who have been beside themselves with worry about their kids. As a parent I can entirely empathise. That is why I posted the 10-point guide for parents, indicating what they can do if a child tells them that he or she hears voices: from our experiences, the less alarmed parents feel, the better the outcomes for their children.
I hope that your son is able to get the support from his therapist to make sense of the tormenting experiences that he was having. Wishing you both all the best.
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Prior to her being subjected to the abuse of coercive-medical psychiatry, Jani was severely abused in her home.
A few years back, Jani’s father was surprisingly forthright, in writing about this, online; yet, some time ago, he began scrubbing his tracks.
For example, he removed the following two paragraphs from his own blog,http://www.januaryfirst.org (and then took that blog offline):
“We tried everything. Positive reinforcement. Negative reinforcement. Hitting her back (I won’t tell you how many people told us that all she needed was a good beating). We took all her toys away. We gave her toys away. We tried starving her. We did EVERYTHING we could to try and break her. Nothing worked.
“The violence became so bad that at times Susan and I both lost it and hit Jani as hard as we could. We hit in impotent rage.
We got a referral to a psychiatrist. Two months later, Janni was hospitalized for the first of what has since been four times, but in truth will be many more times. Today, Jani is no longer a brat. Today, Jani is schizophrenic.”
Source:
http://bipolar-stanscroniclesandnarritive.blogspot.com/2009/07/los-angeles-times-reporter-defends.html?showComment=1314932254631
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This is disturbing to read and leaves me with even more questions about Jani and what is really going on for her…
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Jacqui,
If the exact nature of Jani’s current ‘treatment’ can’t be discovered by reading her father’s new book (which I have never read, but which I know is now being featured in the Guardian), I believe we can, nonetheless, reasonably surmise, that Jani is a young person whose parents are – with the help of psychiatrists – drugging her behaviors continually; for, in the course of their seeking help for her, years ago, Jani’s parents came to developing a ‘mental health’ lobbying platform, vis–à–vis Jani’s mom (Susan) hosting her own weekly radio show called, “Bipolar Nation,” and by way of Jani’s dad (Michael) often co-hosting…
Both parents are outspoken, in their opinions, on that show (as, of course, most radio show hosts will be); sadly (for their kids), not infrequently, they are inclined to broadcast their children’s ‘mental health’ issues on that show. (That said, now, hesitantly, I mention the link to their free podcasts):
http://www.latalkradio.com/Bipolar.php
In your comment, above, at January 22, 2013 at 7:50 am, to Chrys, you say:
“This story is horrifying and aside from Jani’s ‘treatment’ one wonders why her family and the professionals working with her think it is acceptable to invade her privacy in such a way. That in itself disturbs me, never mind what else she is being subjected to.”
I share your sense of horror. (Indeed, *never* do I cease to be troubled, by the latest example of parents publicizing their kids’ ‘mental health’ issues; personally, I struggle, wondering: is it OK even to discuss the most trivial matters pertaining to my child’s life, online? Hypothetically speaking: can I even mention what I may consider a disappointing report card, in good conscience? I think not. (But, of course, mentioning ones child’s doings, from a position of relative anonymity, might not be so bad. I’m uncomfortable with it, when people do it; but, the anonymous approach may be somewhat more acceptable.) Certainly, I’d not want to be one to attach *any* kid’… read more
First of all, sorry I did not know about the possiblity to sign the paper. In my daily work I meet far too often children and young people coming to our place with psychiatric diagnosis and prescriptions of drugs. Fortunately I am often part of a change, I have the joy to work with people who believe in other things, people who believe in the importance of being present and participating in a relationship to try to find out how come it is like this. And there are answers, always! Not necessarily easily found, not necessarily comfortable, sometimes very painful issues to discover, sometimes with a lot of guilt and sleepless nights. So it is important to be there together with the child and his / her family (if possible). There are no other way. It can never ever be acceptable to define a child or a young person having a psychaitric illness without taking into account the context, life conditions, family, society, etc… And sad to say, but have also very many times met children and young people getting worse in a “professional” context with its manuals, methods, and different criterias. I have a dream about a different approach, about a knowledge which include many people, also the professional “helper”, a knowledge which has to do with trust, hope, taking a responsibilty and to find ways to collaborate.
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I agree Carina that there are ALWAYS answers, even if they lead to some very painful, uncomfortable issues. No experience, nor person is utterly incomprehesible, if we are simply willing to be with people, relate to them and really hear what they have to say. Sadly many ‘treatments’ actually make matters so much worse which is a travesty. Fortunately, there are a growing number of us who are expressing our outrage at such misguided attempts to help and who also have the knowledge and experience to advocate ways of working collaboratively that really do help.
Looking forward to collaborating with you and others in Sweden in April, to help spread the word about what works!
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Yes it will be great to see you, and to listen to you of course!
This morning on my way to work I met a mother and her four years old daughter on their way to day care (or how to call it in English). In the beginning of last autumn a colleauge Hanna and I met the girl and her parents who at that time were in a chock since a psychologist after meeting the girl ONE time had told them that the girl has a very severe autism and has to start medicating and go through psychological tests. They were also told that the girl will never be able to live “a normal” life. Well, to make a long story very short, we have seen the parents during some months and listened to their story over the last ten years and how different things have happenened in their life, and not to say that everything is totally ok by now, but they again trust their own feelings and experiences towards the daughter and have decide not to go back to child psychiatry. Welcome to Gothenburg!!!
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This is an all too common experience, in many parts of the world it seems Carina. It just makes me more determined to continue to raise awareness of the harm caused by those who are supposed to help, and of the many excellent alternatives that are developing across the world. This web site is a fantastic way of spreading awareness of both of these crucial issues. Pleased to ‘meet’ you here – very much look forward to meeting you in Gothenburg in the Spring!
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Jacqui,
This family has received a great deal of publicity in recent years, and it is difficult to avoid the conclusion that the parents have encouraged the child’s dysfunctionality for their own gain. As long as all the criteria for these so-called illnesses are behavioral, this kind of thing is almost inevitable. Most commonly, this takes the form of parents coaching the child with a view to obtaining disability income. But more exotic versions can and do occur.
Philip Hickey, PhD
http://behaviorismandmentalhealth.com/
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Parents coaching children in order to obtain disability income isn’t something I know much about but I can imagine it happens. As to whether so-called illnesses arebehavioral is open to debate. It seems to me that troubling behaviours are the manifestation and consequence of overwhelming emotions, reactions to the environment, impact of significant relationships etc. Simply switching the frame from illness to behaviour isn’t the answer for me. A focus on it may be part of what helps makes sense of the whole person and their experience…
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I so appreciate this, Jacqui.
I have been suicidally depressed many times, but I have never heard voices. I have talked with voice-hearers in the hospital very matter-of-factly, but I never thought about this approach until I heard of HVN, just a few weeks ago.
Your post is enlightening. I am a peer specialist, and I am so grateful for the information I get at MIA. I am in your debt.
Pam
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I am so pleased that you found this helpful and that you have discovered HVN. Lovely that you wrote to say so. Thank you Pam.
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I wrote about Jani as an exams project and did a lot of research as her father has used her to promote his blog and later the book based on his blog – and to beg for money. It is one of the most tragic public exploitations of a child I have ever been a witness to. He has been investigated for sexual abuse of jani but never convicted. He has himself written about the violence he and Janis’s mother exposed Jani to before he found out that that was not a smart thing to do on the net. He becomes infuriated if he is criticized on his blog and no form of critique is tolerated so no dialog is ever entered into unless it is basically praising especially him. There are clips when Jani is just weeks old and he is talking about her hallucinating! I concluded after reading, watching video clips and listening to their radio program that we have here a case of what could go under the heading of Munchausen by proxy syndrome. The interview with Oprah btw shows clearly (my opinion) that Oprah is out of her depth and that she believes Jani is ill and addresses her as such.
However what is also dreadful is we have a psychiatric system prepared to drug Jani to the gills and ignore the family life which in Jani’s case is plastered all over the internet, though now-a-days it is carefully planned and orchestrated. There are clips where it is so obvious Jani is trying to please mom and dad (and the camera) by waving a plastic knife around so that the staff can say she needs to be admitted as violent(!)
Thanks Jacqui for bringing the plight of this poor child to our attention again, and who knows maybe one day she will read and hear that another truth also exists…
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