Wednesday, October 6, 2010

Misery loves company

Several years ago I joined an on-line schizophrenia support group. I was beginning to change my ideas about the diagnosis and I joined the group to meet people in a similar situation. We live in a European city where we are not fluent in the local language and this has limited our reaching out. The only people I knew going through what Chris and I were going through were part of the bi-weekly support group run by the hospital program that Chris attended. Since I was not fluent in the language, contact with other parents was virtually non-existent.

I stayed with the on-line support group for about two years. It ultimately served to harden my holistic position. The regulars in the group were wonderful people struggling daily to cope with what they saw primarily as a disease needing medication. I quickly began to feel quite out of place. The members defined themselves by their diagnosis. They lectured each other on the need to keep on the medication and did not agree with the few people who suggested that there might be another way. It was heartbreaking to see where the medication had brought many of them.

There was one young woman who was approaching her thirtieth birthday. She lived by herself in a rural area. Her father stopped by from time to time to do repairs, but for most of the time she was alone, and this was not a good thing. It pitched her further into psychosis which broke through every so often in the messages she wrote. Her loneliness was overwhelming. She was on so many high dose psych meds it made my head spin. Who enabled her to get to this position? She saw a psychiatrist once a month, but only for a med check. This young woman was very articulate, even through the meds fog. On occasions when she lapsed into psychosis, the group's verdict was to urge her to change or increase her meds. If she was clearly psychotic while on meds, shouldn't it dawn on the members that the meds might be the problem here?

The overuse of meds seemed to be a problem mainly in the United States where so many factors collude in giving people lots and lots of pills and little access to psychotherapy. It was mind boggling to see how badly off these people really were. Multiple pills, multiple diagnoses. Nobody seemed to question whether they truly were all of the labels. "I'm schizoaffective and OCD, with depressive features." No, you're not, I am thinking. You merely have problems that have not been properly addressed.

I began to feel badly for even opening my mouth about an alternative view. Why? Simply because many of the members were my age and at this advanced age, reminding people of what might have been seemed downright cruel. They clung to their diagnoses because to do otherwise might open up regret. The type of people that were in the group tended to be ones who drew comfort from feeling bad. "My brother jumped off a building in the 1970s, said one member, "and he's been in a wheel chair ever since! That's the reality of untreated schizophrenia, don't you get it? Don't talk to me about getting off the drugs!"

I left the group, not wanting to feel bad about a situation I knew I could do something about.


  1. I've often wondered what it is that can make me so really angry whenever I read for instance a blog post (and I come across these blog post -- and I come across them quite often, since they are many -- where I read nothing but what I then, out of the anger, in my thoughts call "lamenting". "They want to send me home for a weekend pass, can't they see how sick I am?? I cut myself the day before yesterday, I'm suicidal, and these bastards want to send me home?!" I've wondered, what is this that makes me so angry about words like those that it almost hurts. Lack of empathy??

    Some time ago, I understood that it wasn't lack of empathy, but rather identification. What the "lamenting" is all about is that these people still wait, and long and beg for someone to come and redeem them: "Please, please, please love me, so that I can love myself!" They'll eagerly swallow whatever crumbs from your table you feed them, if it's diagnoses, pills, even things like restraints, as long as you can make them believe the crumbs are love. Since they aren't, people never can get enough of them, and no matter how many you throw them, they'll become increasingly hungry, increasingly miserable, not better.

    I've done the same, eagerly swallowing whatever crumbs from her table my mother threw me, hoping that one fine day the love I so longed for would be among them. It wasn't, of course not. No one can give you what you only can find inside yourself. The con is that they make you believe you don't have it inside yourself, that you need them to give it to you. That's how they create the dependency and helplessness they themselves mis-/take for love, and feed on.

    The "lamenting" is painful, almost traumatizing to witness, and it makes me just so angry, because it reflects my own pathetic, vain attempts to have my mother give me the love she'd made me believe, I could only get from her.

    People don't know that they can and have to redeem themselves. And if you tell them that no one and nothing else will do it for them, that's a death threat.

  2. I have been reading your blog just about everyday for two or so weeks. I just now searched on Soteria because that is something I am very very interested in. The founder has written on spin offs of those now-closed houses, but I find they are a pale version of the original. Anyway, I also notice that a lot of people advocate in favor of nutritional therapy and influx of vitamins. I do think there is a definite connection between diet and physical and metal well-being. But getting the precise diet that works for you down can take a lifetime, and what we want and need changes over the years too. And also one pattern of eating does not work for everyone. Therefore in my Utopian ideal Soteria house, I would for sure stress good nutrition, no junk food, lots of water, fresh meat, vegetables and fruit, but I don't know if I would go much beyond that. I tend to stick with the fundamentals of the founder of Soteria and people like Peter Breggin.

    Thanks. I look forward to keeping on reading.


  3. Ooh boy, do I struggle with this one. Part of the reason I really, yes, hate American psychiatry is because I have watched what happened to my cousin in the name of "treatment". She was gang raped, then taken to a psychiatrist, who diagnosed her as PTSD and put her on meds. She never recovered. She then was upgraded to Bipolar, and again upgraded later to Schizophrenia. She got worse and worse and worse. Today she is obese, with involuntary muscle movements, disabled, and living in a group home on $825 a month from SSI. She is 30. This is what "treated Schizophrenia" does. In the back of my mind, I always had a nagging thought, "What if she'd do better off the meds? Why don't we try that?" But I always brushed that thought off, because I really didn't know anything.

    When I first discovered and did the research, I was really excited to tell people that conventional knowledge about Schizophrenia and Bipolar just wasn't true, for the vast majority (about 20% of people still ARE chronically ill, though, even in India, but that means that 80% get WELL!!!) I thought that people would surely choose freedom over drugs that made them fat, unmotivated, and in general, feeling like crap. I was wrong. My efforts to educate others about another way were generally met with hostility.

    I do think it's too late for people like my cousin, who have been heavily medicated since age 15. And it's mean of me to open her eyes to the reality of what happened to her, because what can be done about it now? And so yes, I AM angry at the system.

  4. Don't forget to read the back issues. I am really stretching for new ideas these days!

    Marian - Thanks. It is painful.

  5. brainzaps - Thanks for describing a real life situation that is all too common. I am an optimist - I feel that there is hope for your cousin but there is a mountain to climb in terms of wanting to change and having others support you in your endeavor. The people who believe that schizophrenia is the result of a diseased brain are the hardest people to change. I lay the blame squarely at the feet of psychiatry who has perpetrated this nonsense on a medically untrained public. If you believe in the disease model, you are less inclined to do anything about it because people tend to think there is something permanent about a brain, that once damaged or "diseased," well, that's it. The first set of doctors that Chris saw in the hospital, spoke of the brain like it was encased in concrete. This was only in 2004 - nobody was talking about brain plasticity in any big way. Then we were told that to "protect the brain" from further deterioration, the drugs were absolutely necessary for life. That's what the majority of people believe today. They've been had. Psychiatry is no science.

  6. I've been complaining that there are no resources in my area. One thing leads to another. I found the Icarus Project, and from there I found Low Recovery International. They have two meetings in my area. Has anyone had experience with this method? I'm still investigating...

  7. Hi Rossa and all reading here,

    I am labelled and drugged for over 3O years with the schiz diagnosis. dispite this I have found fulfillement and a rich and full life experiance now and for the last several years through a process of accepting responsibility for myself and the application and living out of the life skills principles which although I knew the theory for a long time I did not apply it in practice until the last few years. I have found the way to live successfully with the help and inspiration of many others who's testimony that life could be glorious and wonderful for anyone who proved willing to embrace and wholeheartedly live up to the highest standards of integrity which are possible to them consistantly.I also now am grateful that I was landed with such a seemingly hopeless condition as schizophrenia as me being the person I and considering all the relevant factors I simply would never have awakened to the fullnes of life which is now my privilege without the pressure of my situation. Life knows what it is doing and we can come to know that if only we will prove willing to do what is necessary to realize it. Because i know what my experience has taught me about finding real answears to my own challenges in life and because I love to love I would be happy to share my experience of what really works with anyone who is even slightly intrrested to the best of my ability without any monetary charge. I now enjoy more than sufficient provision of money and things so that I dont want nor need more and enjoy sharing the wealth of the real treasure which is life itself with everyone I know. Rossa if you would like to communicate with me or you would like to suggest to your son Chris to do so, please do either privately or publicly on this site to my email address.

    With appreciation and gratitude for your gifts as shared on this website.

    Noel Gaughan

  8. Well, I guess I should clarify. I do believe it is possible to recover, even at 15 years on neuroleptics. The problem is that her entire family (except me) believes the bullshit, so she has no one to support her or guide her. And, since she was just 15 at the onset, she did not have an opportunity to become educated enough to be strong enough to really question what she's been told. It is hard for anyone to believe the level of deception at work in the world of psychiatry. Doubly so when you have spent your formative years being drugged out of your mind. It is a completely sad and frustrating situation

  9. Noel - Thank you so much for your insight. You have demonstrated that people evolve and that "schizophrenia" has in many ways been a gift. I feel the same way. Please feel free to share you insights from time to time on this blog so that others can learn.

  10. brainzaps - You have pointed out something quite real. The younger you are when this happens, the less insight you have and the more willing you are to trust others. Sometimes people ask me why I just don't leave Chris alone to get on with this himself. I knew that he wasn't strong enough in the beginning to question and resist and someone else had to take over this role.

  11. Re Anonymous's comment on Low Recovery International

    The mission of Abraham Low Self-Help Systems is to use the cognitive-behavioral, peer-to-peer, self-help training system developed by Abraham Low, MD, to help individuals gain skills to lead more peaceful and productive lives.

    The organization meets this mission by providing mental health self-help groups Recovery International community, telephone and online meetings, The Power to Change for Schools and The Power to Change for Corrections.

    Abraham Low Self-Help Systems is a merger of Recovery International and The Abraham Low Institute. Recovery International was founded in 1937 and consists of more than 500 community-based peer-led self-help meetings in North America and beyond, telephone meetings and online forums. The Abraham Low Institute was founded in 1989 and developed The Power to Change for Schools and The Power to Change for Corrections. The two organizations merged in January 2008 and officially incorporated under Abraham Low Self-Help Systems in January 2009.

  12. Dear Rossa,

    I am delighted that you have demonstrated sufficient openess to my email comment of yesterday to so graciously invite and allow me to share more of my truth. Most people are simply too cynical or lacking faith in life to even acknowledge the real when it appears.To get to the point now what works for any person is of course the basic principles of life as recorded for us as the phillosophies of both Jesus and The Buddha, but the stumbling block has been the fact that there have been very few people on reckord who have actually been able to make real and actual the directions which are available. There are myriad schools and phillosophies etc which claim to be the truth that we must have etc concerning what these two manifestations of the Christ spirit revealed in their lives but as many of us have found when we saught to actualize their teachings and exercises in our lives they simply dident live up to the promise which the vision of these great ones seemed to suggest and we again and again could'ent really summen the wholehearted level of conviction and commitement that deep down we knew was necessary. After all who in their right mind in our society no matter how accomplished in religion meditation or anything else that is acessible to all will actually prove in their living that the Master really did point to something vital when He suggested that we should be perfect or that loving everyone all the time could could actually be done and even by anybody.These directions on the generally available roadmaps and the multitude of distortions which are present in the minds and feeling realms of all people who are living on earth today have mostly proven to be insurmountable barriers to the actualization of the truths which the reckords of their attainments testified to.However those of us who have a degree of lived honesty and something of a niggling inner urge that insists that there is more to life than that if you are good etc you will enjoy yourself when life has gone are blessed and have real hope. It is my joy to proclaim the truth that The Kingdom of Heaven is at hand, or to put it in different terminology it is not impossible for most people to know the state of conciousness of enlightenment while you live in the body which you now have. That does not mean that most people will avail of the opportunity to experience the truth of themselves but wheather anyone accepts the helping hand which I am offering to know these things indiffererance apathy or plain disbelief cannot prevent me from being what I am and saying loudly that the truth is true.Im not the only person on earth that is qualified in some meaningfull degree to say this and to say in this way that these truths are powerfully and meaningfully real in my daily living experience but as each person is unique this way of doing it and saying it here is a part of the way that I am sending forth my Word into my own unique creative field. Come near unto me I have real food to share.To know for yourself that I telling the truth you who might be willing to actually beleive (the word beleif comes from an old Saxon word which means be lief or be willing)Iam happy to offer to help you to the degree of your ability to receive the transcendant Identity which my experience authorizes me to offer to share with you freely.
    While this portal is open I will shine light in it. Drink freely of the water of life which is available here. No matter what you have done, what has happened to you or what you now believe, you have the capacity and the free choice to avail of the gifts which I have the commision and the ability to share with you but that you choose it.

    With Love to you anyway.


  13. Dear Brainzaps,

    Your compassionate and intelligent post concerning your relative compells me to respond as best I may.I WAS 14 when my drugging began nontheless i have proven to myself and a few others who have began to notice that life is no longer a vactim state for me but rather a bit of an inspiration to long for real joy in their own lives. What your understanding does for you is of course that it puts you on the spot for providing the answear that is needed in your world. Can you feel that responsibility so deeply that you are willing to do whatever is necessary in your situation to assist the needy one to awaken to her own responsibility to herself wheather she accepts your caring or not for as long as it takes. It is always other people who provide what we need in this world and we really are our brother's keepers regardless of popular phillosophies.Most people seem to take the attitude that the proplems of the world are somebody else's responsibility and the net result is that no one is responsibile appearently, and no one really knows how to do anything very much that is truly practical and useful in the living of life because the knowledge of how to solve the problems of life only come when we experience engagement in life circumstances either of our own or in working to assist another. there is no substitute for living. I am currently seeking to provide example and inspiration for quite a few seemingly hopless cases in my world. This is challanging and frustrating work but I very well know that if I dont give myself as fully as I can to it something precious of me will wither and fade with the neglected responsibility. I found that when you learn how to give all of yourself away and this kind of attitude becomes your habitual mode of function, what is really priceless begins to reveal itself more and more and the cup of my life begins to overflow with abundance in all areas of my life. And amazingly i can trust absolutly who I am to be sensible not to go to unessesary exremes of neglecting my own comfort and needs. All my concerns are well taken care of.

    Good luck,



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