NAMI perpetuates schizophrenia

In belated honor of World Mental Health Day, I thought I would begin with the National Alliance on Mental Illness (NAMI). As a parent, I’m supposed to like NAMI, right? It’s a grassroots organization “dedicated to improving the lives of individuals and families affected by mental illness.”

A stroll through the schizophrenia section of the NAMI website is a downer. NAMI is hardwired into promoting medications, while I assume that many of the people it supposedly represents and who are following NAMI’s advice aren’t that hot on them. The NAMI website even has an “Ask the Psychiatric Pharmacist” section. The answers found there in the FAQs freely admit that some of the drugs are addictive, they have unpleasant to life-threatening side effects, and yes, there are long term consequences to using these drugs. At the same time, the pharmacist goes on to reassure us that taking the meds somehow offers protection to the brain cells from becoming damaged due to mental illness. The “client” is treated like an idiot, who has no real clue what is in his or her own best interests.

I am dumbfounded that NAMI would dismiss the real health consequences of these drugs for those of their clients who are the front lines here, but of course, I shouldn’t be. NAMI is more of a relatives’ organization than a users’ organization. I know of many people who are suffering the consequences of looking after their rocky relatives and NAMI gives them what they want – the ability to convince themselves and their relatives that they are better on the drugs than off them. It all makes sense until you end up with a relative who is on the meds, grossly overweight, perhaps diabetic, but still psychotic. NAMI dismisses the side effects and the psychosis by emphasizing that people just need to find the right medication. It’s a vicious circle. There will always be a drug in the NAMI pipeline of advice. After all, NAMI supports the latest research, which is heavily weighted in favor of meds because that’s the only research that is considered authoritative. There is no research money in people’s actual experiences. To NAMI, schizophrenia is a biochemical disorder and that is all it is.

Many people say that NAMI helps them to cope better with an admittedly difficult situation. I understand and empathize because we all need to find ways to cope with a very scary, bewildering situation. My objection to NAMI is that I don’t want either me or Chris just coping, I want to move beyond that to cure. But the NAMI website doesn’t hold out that prospect. Coping is the best it’s ever going to be in NAMI’s view of things, especially when it comes to schizophrenia.

To NAMI recovery is all about coping – group living, structured programs, continuing of course with the medications, professionals (not you) taking charge of your life. The professionals can also be of service to monitor your meds. When NAMI talks about helping you to do your grocery shopping and to manage your money in pursuit of what it calls the prospect of a higher level of functioning (only the prospect of this low standard, may I point out), it makes me wonder whether the brain cells are actually being protected by the meds NAMI so strongly endorses. I see my son at the age of forty out grocery shopping in his bathrobe, drooling and disheveled, with a caring professional showing him what money looks like.

Coping is all you are going to manage to do if you take NAMI’s advice on the meds. It does not recommend getting off medications for schizophrenia. The NAMI website won’t even acknowledge that many people have done so and are doing just fine, thank you very much. The NAMI website is an exercise in scare tactics. It hasn’t pointed out, as a grassroots organization should, that nobody wants to be on meds if they can help it. Many people don’t want the meds and would actually like help getting off them and finding other strategies to deal with their problems. Doing so might put the individual outside the realm of just coping. NAMI would find this probably too radical a concept.

I don’t and I won’t envision that bleak future for Chris As a caring relative I can do my part to make sure he is not merely “functioning”, but thriving. I have more confidence in the holistic approach than I have in what NAMI offers.

Out of town

I’ll be out of town for the next week. My ability to post and publish comments will be limited. Your patience is most appreciated.

I think readers might actually like a break from my obsessive daily blogging. Taking myself out of town, even if it’s for business, clears my head and gives me a chance to sketch out ideas for future posts.

One reason for my daily blogging is to sharpen my writing skills and to establish a firmer platform for my writing. More importantly, I hope that people don’t mind a daily reminder that schizophrenia doesn’t have to be a black hole, is curable, and also an interesting journey in itself.

I am contributing a chapter to a book that is due out at the end of this year. Goddess Shift will be published by Elite Books.

See you in a week!

Anonymous advice from other people

I read through all the comments on Oprah’s website on the Jani Schofield interview that took place on Tuesday, Oct. 6. I was glad to see the large number of people who looked at the problems of this seven year old girl diagnosed with schizophrenia in a holistic way. When a child this young has hallucinations and is violent, I think the people who talk about Indigo children, faith/spirit based strategies, and yes, even exorcism, are on to something. I say this because writers and poets have known for centuries that the period of infancy and childhood is a gradual process of drawing away from God/the universal mind. Some children, however, spend a longer, more intense time on this journey, and help is needed to coax them back to accepting a more material reality.

What Oprah’s commenters did not remark on is that a person with a diagnosis is usually seen as the problem. I believe that the problem should be seen in the larger context of family. This is my plug for more people to use family psychotherapy in addition to other holistic interventions.

It is interesting that the Schofields have named their children January and Bodhi (meaning either “enlightenment or awakening”) yet seem unwilling to embrace alternative healing ideas as something “extra” for their daughter. Michael Schofield is on record as saying alternative healing is fine if used in conjunction with medications. He’s not there yet in practice as it appears no alternative therapies are being tried. When I say alternative, I am referring to practices and therapies that are off the radar screen of most people (this is schizophrenia, after all), such as looking at the problem shamanistically, spiritually and energetically. As we all know, there is no quick fix. Healing works best if you try a number of different approaches and are consistent. If someone is lucky enough to shout “eureka, I’m cured” after one type of intervention, then they should consider themselves indeed fortunate. For the rest of us, it’s a slog.

In the spirit of providing ideas of what just might work for you, from time to time I will post an updated list of what other people are doing to help themselves or their relative. Here are some ideas that I have picked up in my travels. Please feel free to send me ideas of what worked/is working for you.


I told my child, as calmly and as seriously as I possibly could, while remaining terrified that it would not work, that as the parent, I made the rules and that they were describing the symptoms of a very serious illness that one, they were too young to have, and two, that I do not allow. I tried to make it that simple – “I don’t allow it” because it was either going to work or it wasn’t. Thankfully, it worked.
See also: Milton H. Erickson


I couldn’t help but Google© his symptoms. He could have been diagnosed, instead I found a snippet somewhere that said that many boys outgrow “fits” or tantrums by the age of 7 or 8.

I also clung-to stories by other moms especially one who’s grown son is now an MD, who did the “classic” lining-up of toys that nowadays will achieve a diagnosis.


I am about to suggest may not make any sense to you but it won’t hurt to try either. If you can change her name it might help. In my culture we really believe that all names have an effect on one’s personality.


When my child was 2 yrs old until 4 yrs old she had her “imaginary friends” all the time everyday and I thought it was ok but sometimes it was annoying and I spoke to my friend about it who spoke to me about ghosts and indigo children. I didn’t want to believe it but she was so right about it. I had an excorism done to my child and prayed a lot and used sage incense and this all worked. Since then she has had no further experiences. Look at this at a spiritual level and try other alternatives.


I discovered running as a primary tool to use in recovery from mental illness.

Scientific research begins to catch up with writers

The New York Times ran an article this week How Nonsense Sharpens the Intellect. The study cited shows that new research is beginning to corroborate what I have long believed – that I have become more intelligent from my son’s schizophrenia. The research also reassures me that Chris began looking for meaning when his familiar habits of thought came under pressure. Schizophrenia is a creative response to crisis, if you allow it to be. This is what writers like Hermann Hesse have been saying for years. As R.D. Laing says: “Madness need not be all breakdown. It may also be break-through.”

The Times article is not about schizophrenia, but it could be. The article talks about experiences that violate all logic and expectation. Kierkegaard called it “a sensation of the absurd.” The article goes on to say that “at best, the feeling is disorienting. At worst, it’s creepy….. Now a study suggests that, paradoxically, this same sensation may prime the brain to sense patterns it would otherwise miss — in mathematical equations, in language, in the world at large.”

According to the article, “the brain evolved to predict, and it does so by identifying patterns. When those patterns break down — as when a hiker stumbles across an easy chair sitting deep in the woods, as if dropped from the sky — the brain gropes for something, anything that makes sense. It may retreat to a familiar ritual, like checking equipment. But it may also turn its attention outward, the researchers argue, and notice, say, a pattern in animal tracks that was previously hidden. The urge to find a coherent pattern makes it more likely that the brain will find one.”

The previous sentence should give anyone hope that schizophrenia (or autism or OCD), properly understood and handled, is a quest for growth and that recovery is indeed likely. A caring individual can help the person with the diagnosis to find that pattern by understanding and appreciating that what is taking place is something quite extraordinary.

The study involved twenty college students who read a short story by Franz Kafka, wherein many strange and unexplainable things happened. Afterwards, they and a group of students who had read a different more coherent short story took a test of what researchers call “implicit learning” or knowledge gained without awareness. The test involved studying a series of “45 strings of 6 to 9 letters, like “X, M, X, R, T, V.” The students later took a test on the letter strings, choosing those they thought they had seen before from a list of 60 such strings. In fact the letters were related, in a very subtle way, with some more likely to appear before or after others.

The Kafka readers outperformed the control group by 30% to 50%.

My own Kafkaesque experience went like this: After we got the “diagnosis” and as I struggled to stop panicking and remain calm, I started to do a lot of research about schizophrenia. The experience of schizophrenia in my son was so bizarre for me, so out of the ordinary, that in itself sharpened my intellect. I had to resort to more creative thinking after being confronted by nonsense talk and spooky behavior. I read up on and questioned everything I saw and heard. I began downing megadoses of the recommended niacin cure for schizophrenia. As a result, I found myself becoming even more focused and energetic, which allowed me to read and observe even more, putting me on a vicious cycle of intellect improvement. By observing my son and looking outward and inward, I began to see connections where previously I would not have seen any. I began to understand synchronicity as I began to understand schizophrenia better. I began to dimly perceive how the universe is connected. I took up writing. I am studying German.

The Kafkaesque journey of schizophrenia provides many side benefits.

The doctor of sound is now accepting appointments for schizophrenia

Chris and I arrived at the mountain hut in late afternoon. In the middle of the living room was a single bed. Surrounding the bed at strategic intervals were three audio speakers. Behind the bed was the computer equipment. Electromagnetic sensors were located under the bed’s mattress.

I lay down on the bed, closed my eyes and the technician encouraged me to visualize the colors of the chakras corresponding to each sound. The primary importance and level of existence of chakras is thought to be in the psyche, but they have a secondary physical importance, too. The first low rumbling sound was the red sound, that of the base chakra. After a few minutes of this pulsing sound, the frequency became higher and the sound changed, according to the color orange. And so on through the colors yellow, green, blue and purple, the highest of the frequencies offered. I paid special attention to anything I noticed about my body as it moved through the sounds. I felt perhaps more air in the area of my feet and a slight stabbing in the left eyeball, but I may have been stretching it to feel something.

After about twenty minutes, we paused, and the sound was changed to that of a spiralling intensity that swirled around and through me, an homage to our expanding spiral shaped three dimensional interplanetary magnetic field. As with the universe, so with ourselves. Fibonnaci spiral patterns are a mathematical sequence also called the Golden Ratio or phi (the irrational number 1.618), which are observed in all living organisms, from seashells to flowers to our brain waves and our double helix DNA.

I felt wonderfully relaxed, as if meditation was suddenly made easy for me. For twenty minutes I let the sound do the work.

Then it was over. As simple as that. The technician, I think I will now call him a shaman, discussed possible changes that I might notice over the next four days: Tiredness, aches and pains in places where I may have had an operation or an injury, were the notable ones. I didn’t think to ask him about psychic pain.

We looked at my “before” and “after” energy envelope. The shaman said I was in excellent shape, the unspoken words being “for my age.” The “before” was the base reading and the “after” was the reading from the spiralling sound. I had demonstrably improved in the orange life energy field.

Chris took over after me and I sat on the balcony and watched the sun dip below the mountains. On the drive home, we compared notes. It is too early to say what the effects will be. We have another appointment in a few weeks. In the meantime, Chris and I are keeping notes.

In the beginning was the Word

When the universe was formed, the Word was a sound, probably a low rumbling sound or a higher frequency sound according to the lecture on sound technology that I recently attended. I write as a mother, not as a physicist or an audiotechnician, so here is where my ability to explain the sound therapy that Chris and I undertook on Sunday bogs down a bit. I’ll try my best.

The exciting new development in mental health for me is the recognition that our cells are energetic and communicate with each other over time and space. It has added a new word to my vocabulary – psychoacoustics – the psychological and physiological effects of sound. There is one caveat to my enthusiasm: Mental health hasn’t caught up to where some of us are heading. It has yet to link sound technology to the potential to heal schizophrenia. Schizophrenia is all about quantum communication. This extraordinary communicative ability is dismissed in most circles as mere hallucinations.

All human beings, plants and animals have a unique harmonic resonance or “life force,” an electro-vibrational energy field that differentiates us from inanimate organic matter. We pick up electromagnetic energy fields and energy disturbances from the life forces around us. Whether we want it to be or not to be, our physical reality is affected by the interacting energy fields of everything living around us. The family, too, has a unique energy field.

Bioharmonic resonance technology measures and verifies universal physical forces that are resistive, capacitive, inductive and reactive constants (like an electric circuit) occurring in temporal space fluctuations in these fields .

What this means to Chris and me is that we each had our electromagnetic field measured on a lovely Sunday afternoon. I have always wondered about Chris’s low energy levels going back to his gestation period. Here was a chance to measure and graph his unique field to see where the energy forces were weak and to correct it over time. As for me, I was there to get my batteries recharged and to further my holistic healing research.

More about this experience tomorrow . . .

How not to be a patient

For several years I was a member of on on-line schizophrenia community. Many of my opinions about schizophrenia were formed from what I learned there. After a while, I began to notice that most of the people there were what I would call professional schizophrenics, because they accepted the label and all that is involved with being a patient. They knew everything about medications, but not much about other ways of looking at the problem. In many cases, the meds didn’t work, yet they persisted in trying more. Many of them were taking staggeringly large doses of a number of antipsychotics. To this they added antidepressants and other drugs. Their lives were desperate and generally chaotic. They had abandoned hope.

For many of the members of the group, a lot of the chaos was due to inadequate health insurance or no insurance. This only adds insult to injury by compounding the problems of the mentally ill while bearing no relationship to achieving mental health. Bad health insurance or no health insurance distracts people. They end up fighting with their insurers rather than concentrating on the real issues. They are worn out from the fight. At the same time, they fervently believe that they have a brain disease, so they think there is nothing they can do. They often considered themselves a “special case,” much harder to cure than other people with schizophrenia.

None of these particular problems are insurmountable, though, depending on your attitude. It also helps to have someone who trusts in you and believes in your recovery.

I noticed that the people in the group who were actually doing well were the ones who didn’t consider themselves patients, who had little time for the meds and had found their sanity through either going the vitamin route or the therapeutic route or a combination of both. They were well versed in the principles of Buddhism, Eastern mysticism and shamanic traditions. One man highly recommended reading Don Miguel Ruiz’s The Four Agreements, because he said it helped him come to terms with himself. They liked the group of people termed the “antipsychiatrists,” because the antipsychiatrists “got” the idea that there is a largely psychospiritual element to schizophrenia. Yes, it helps to have a psychiatrist, but I noticed the people who seemed to be in charge of their lives were the same people who were also critical of the role of the psychiatrist in their lives.

These people didn’t generally last long in the group, because not enough people were receptive to their message. A lot of them were blunt in their opinions, therefore not particularly likeable. Yet, these were the people who had recovered and wanted to show other people that they could do it, too. Few seemed to listen.

A new kind of stigma: Not sane enough to be weird

I don’t know how often I’ve attended talks where the researchers are looking into esoteric topics, like flying saucers, past life experiences, etc., and here is how they present their findings: “All the people I interviewed who had reported seeing flying saucers were mentally stable and had no trace of mental illness, otherwise I would have excluded them from the study.” Or, re a study predicting the incidence of psychic abilities in the general population. “Of course, I excluded the mentally ill,” the researcher said.

So supposedly “sane” people who report the admittedly rather odd phenomena of flying saucers or past lives are somehow “more reliable” than the mentally ill? And, there is something “tainted” about the psychic abilities of the mentally ill?

A lot of researchers rely on the presence of another witness to the event to bolster the claim that a flying saucer isn’t just a projection of one person’s fantasies. I’m not sure this is a reliable methodology. There is something called “hysteria,” which can be contagious. When it is contagious it is called “mass hysteria.”

When Chris reported his first alien sighting at the ripe old age of eleven (see: A parallel universe, even in the suburbs – June 2, 2009), he was supposedly sane, too.

If I wanted to learn about the phenomenon of flying saucers, I would study the so-called mentally ill. And if I wanted to learn about psychic phenomena, I would ask them, too. Daniel Paul Schreber has written a classic memoir of mental illness* in which he unveils his detailed understanding of how the universe works. Writing in 1902 he had a precocious appreciation of quantum physics.

Conversely, if I wanted to study these kinds of phenomena, I might want to explore it from the point of view of a sudden energy imbalance. What had happened to the research subjects in the weeks and months leading up to the experience? Was there a death in the family or a physical trauma that could have thrown the assemblage point into the high right position which leads to hallucinations?
Daniel Paul Schreber, Memoirs of My Nervous Illness

Recovery newspeak

I am not even that thrilled about the use of the word “recovery” as it is understood in the context of mental illness. I use the word recovery prominently in my blog because Chris is still recovering, but I expect he eventually will be functioning completely normally, supporting himself, off medications and doing whatever he likes, and then I will use the word “cure” in his case. I feel he will be entitled to use that word, just like the actor Margot Kidder does. After not having bipolar signs or symptoms for many years she says she’s entitled to use the word “cured.” (I wonder if anybody has pointed out to her that she can’t possibly be cured because “once bipolar always bipolar?”)

Ron Unger, in a recent post, writes that recovery has now been expanded to allow for the possibility of still being mentally ill. It is becoming newspeak for putting the best polish on a less than optimal situation. “Oh, sure, he/she is ‘recovering’,” people will think, “we all know what that means.”

I applaud the recovery movement, I really do, but I also feel that there is a goal post at the end of recovery that should be called “cure.” If we don’t aim to be completely well and functioning, we won’t go far on the field of victory. We will fall short of what we deserve.