Wednesday, October 28, 2009

Listening to Mental Illness

Talk - I should say, listen - to first-generation NAMI family members. These are people in their 70s or 80s caring for sons and daughters in their 40s and 50s and 60s, individuals with severe mental illness such as schizophrenia. Back in the bad old days, both the mental health profession and society-at-large turned their backs on these fathers and mothers. They were blamed for being bad parents.

Things haven't improved all that much over the years. Keep listening and you will hear their concerns about who will look after their kids after they are gone.

We know the world is a cruel and indifferent place, but nevertheless you can't help but want to shake your fist at the heavens like some lonesome prophet on a wilderness mountain top.

You will hear similar stories from a younger generation of parents, this time mothers and fathers of young kids with bipolar. Again, the lack of empathy and concern from people who should know better. Again, people blaming them for being bad parents.

Two previous blog posts - Age Six and Age Seven With Schizophrenia - sympathetically featured Jani Schofield, a seven-year-old who has been diagnosed with schizophrenia. Surely, that cannot possibly be true, is a justifiable first and second and even tenth reaction. Earlier this year, her father Michael began an eye-opening blog, January First, documenting Jani's extraordinary situation and the extreme distress it is causing her family.

Shari Roan of the LA Times picked up on the blog, and just recently Oprah devoted a whole show to Jani. Both the LA Times and Oprah were highly sympathetic, both to Jani and her family. Mental health journalist Robert David Jaffee, writing yesterday on the Huffington Post, also evidenced clear empathy. As Mr Jaffee reports:

The expression, "I had a bad childhood," has never seemed sufficient for describing the horrors visited upon many youth. The expression's inadequacy becomes apparent when one hears the story of Jani Schofield, a seven-year-old, who has been diagnosed with schizophrenia and has already been hospitalized seven or eight times in psychiatric wards. Typically, psychotic disorders afflict people no earlier than their late teens.

Though we live in an era where too many have been over-diagnosed and over-medicated, the case of Jani Schofield makes one realize that not all diagnoses are created equal and some diagnoses, like child-onset schizophrenia, will never be fashionable.

It is important to note that Shari Roan, the producers of Oprah, and Oprah herself, all had conversations with Jani and her parents, while Mr Jaffee interviewed Jani's mother Susan. A far different response came from those who simply interviewed their keyboards. Blogger Liz Spikol, citing Furious Seasons with approval, was all too representative:

Michael Schofield’s voice on his blog makes him come across as a very angry person with serious anger management issues–a person who’s self-aggrandizing and resistant to learning new things.

A few days ago "An Open Letter to Oprah Winfrey," signed by 95 mental health workers, patients, and family members from an organization called Intervoice, added a new twist. According to Intervoice:

We want to tell you about an alternative and more empowering approach to the experience of hearing voices. ...

The letter continues:

It is important that we appreciate that the desire to make the voices disappear is a goal of the mental health care services and not necessarily that of the children themselves. There are some children who did not want to lose their voices. This is OK, for the most significant thing is that the voices no longer remain at the center of their attention. This is because, as the relationship with the voices change and became more positive, instead of hindering the child the voices start to take on an advisory role. If children find within themselves the resources to cope with their voices, and the emotions involved with hearing them, then they can begin to lead happier and more balanced lives.

The most important element in the process of positively changing a child's relationship with his or her voice is support from the family. Unfortunately, our research has shown that being in the mental health care system had no positive effect on the voices. However, we did find that what had a positive influence on how the child coped with hearing voices was being referred to a psychotherapist who accepted the reality of the voices and was prepared to discuss their meaning with the child.

Had not Jani been brought into the conversation, there would be a lot of merit in this point of view. This is an extremely important topic that deserves a full airing, but not in the context of Jani. Any reader of Michael's January First blog realizes that there is far more going on with Jani than simply hearing voices. Her unpredictably violent and explosive outbursts have compelled her besieged parents into leasing two separate apartments, so that one parent (and Jani's younger brother) can get a break.

Ironically, Jani and her family seem to have been applying the Intervoice prescription all along. From the online video clips of the Oprah episode, it is apparent that Jani is already comfortable with her hundreds of voices, denizens of her imaginary "Calalini" world. Moreover, it is clear her parents support her in this.

But now, it seems, Michael and Susan are losing their daughter to her fantasy world. As Michael reports on his blog:

The point is that the real world is increasingly becoming irrelevant to Jani, something that was not the case at two years old. Jani was acutely aware and sensitive to others around her up to the age of three. In fact, her needs seem to come second to the world around her. Starting at three, she went backwards to the point that now she is more like a toddler than she when she actually was a toddler in the sense that Jani’s interaction with the world is often limited to her basic needs (food, bathroom, sleep).

I realize I am stating all of this in a coldly intellectual way. It is a defense mechanism. Right now I have detached myself emotionally and am looking at this as if I was an outside observer because in reality I am losing this War. I am losing my daughter. ...


herb said...

Well John, you went ahead and did it. I thought this issue was quietly going to bed and I read you cited Liz’s blog on this topic. I recalled commenting on her site so I went back to reconnoiter.

And with that I’m gonna quote myself from my just finished comment to her site:

Dear Mr. Baker,

I read your letter with much interest although I have no personal experiences or knowledge with anyone hearing voices or diagnosis encompassing such a symptom. I am much in agreement one should try to first consider the least invasive therapies which your therapy and letter appears to offer up.

Although after reading your letter I am struck by several points the first being your three bullet listings:

• To hear voices in itself is a normal experience. Of course it is unusual, but at some time or another, many people hear a voice when nobody else is actually present.

• However, it is possible for people to become ill as a result of hearing voices when they cannot cope with them.

• For most children (60%) the voices disappear over time as the child develops and as they learn to cope with life's problems, and with the emotions and feelings involved with those problems, which led to the voices starting in the first place.

While your letter encompasses hearing voices and the letter was prompted by the Schofield case history no where I see you addressing the issue of the actual violence the child has demonstrated or the suicidal ideations acted upon amongst other points expressed by the Schofield’s.

I also noted “For most children (60%) the voices disappear over time” and what about the remaining 40%? Is not possible the child in question a part of the 40%? And if so, you’ve omitted a seriously ill population of patients and have not addressed their issues.

Are you or the esteemed professionals able to guarantee efficacy through your therapy?

I also did not read anywhere in your letter anyone directly offering therapy assistance, financial assistance and/or otherwise to help in the case of the Schofield’s?

I personally for more than four decades have been researching and collaborating with leading researchers and professionals while maintaining an open mind to alternative and/or adjunctive therapies to treat my spouse’s Major Depressive Disorder. Your letter represents to me a therapy certainly to be considered but also a dichotomy once again in professional viewpoints especially from the professionals the Schofield’s have obviously consulted with and are currently treating their child.

Speaking from the perspective of a support person and caregiver I’ve always questioned myself in terms of the best treatment(s) for my spouse but I’ve never questioned my love, devotion and her best interests as I similarly believe the Schofield’s exhibit to their children.

I personally do not believe this issue to be one of wrong or right as there is no definitive and/or quantitative answer(s) but decisions which emotionally aggravate and stress the caregiver and potentially further hurts the patient and one which boils down to that which I’ve long stated in my caring for my spouse as the “Trial and Error Approach to Wellness.”


Lucy Talikwa said...

Jani’s story is amazing, and I mean this in the truest sense of the word – a-maze. I was not aware of her life and the controversy surrounding her. There many tangents I have bookmarked and have scanned to read in full and that I will follow. Thank you for bringing her to my attention as you always do in your reporting, John.

Her parents have a great task set before them in this life. You are well aware of the recent speculation that bipolar disorder is genetically schizophrenia’s cousin; of so, we share the same family tree as Jani. She and others like her are ours, ones we can’t ignore.

Gina Pera said...

Well done, John. Thanks.

John McManamy said...

Hey, Lucy. Kraepelin separated out BP from SZ back in the late 1800s-early 1900s, which at the time represented a big advance. Psychiatry needed structure. And to a large extent the separation still works.

But we can't deny the overlap, and, more important, some of the underlying biology may be the same. These days, as part of getting a better perspective on bipolar and also to get a more clear idea on brain function and dysfunction, I'm reading up on SZ and attending SZ conferences and seminars.

I no longer view individuals with SZ as different from me. There are too many similarities. Besides, we belong to the same species. As the Bible says, "I am Joseph. I am your brother."

cretin said...

That letter's comment that voices are a problem when "they cannot cope with them" really smacks of "blame it on the patient". It really shows THEIR lack of understanding.

It is sad about Jani's deterioration. Unfortunately that was a critical difference between dementia preacox (schizophrenia) and manic-depressive psychosis that Kraepelin had observed. The outcome for schizophrenia is often just tragic. People should not make light of what this poor girl is going through.

John McManamy said...

Hi, Cretin. Absolutely agree. It's absolutely tasteless on the part of anyone to seize on a family tragedy to advance their own agenda or treatment or cure, as if their prescription would reverse the course of the individual's illness. John Grohol on PsychCentral cited Intervoice with approval and called Oprah's treatment "opportunistic" while inexplicably touting Tom Wootton's "The Bipolar Advantage" and "The Depression Advantage."

Who is the real opportunist?

I have cited Wootton with approval on many occasions, including past blog posts, but never ever in this context. The suffering in our community is real. Too bad a lot of individuals choose to turn their backs on this terrible fact of life.

andrew said...

I agree with you in the sentence:Knowledge Is Necessity.
We have to must knowledge at least all things in our life and deep knowledge is very inmprtant in the work what we are doing?.With out knowledge we can't do any thing bettter then the best.

dsi r4

Keith Adams said...

While I agree wholeheartedly with most people's comments, and feel immense sympathy for Jani and her family, the Intervoice letter did remind me of a recent, excellent New York Times Magazine article on the Americanization of Mental Illness, which I presume many of you have read ( It's thesis was that the West has pathologized what other cultures might call (my neologism) "differently minded" individuals.

I'm not for one moment saying that Janie shouldn't have received the psychiatric care she's been given, but, as John alluded to, this big subject of alternative interpretations to mental illnesses is of great interest, particularly if you have, as I do, a serious mental-illness (bipolar disorder). I look forward to reading more of John's and his visitors' blogs and comments.

Keith Adams

John McManamy said...

Hey, Keith. Many thanks for your comments. Here's a blog piece I did in January based on Ethan Watters' article in the NY Times:

As you indicate, we can take both points of view into account. I strongly suspect that like you, Mr Watters would be highly sympathetic of Jani and her family. We know that what Jani is going through is not a normal experience distorted by our cultural norms.

Ironically, where the distortions of the cultural norms fit in is that in a non-Western society you wouldn't find self-aggrandizing bloggers like Liz Spikol spewing ignorant condemnatory hatred at the poor father. How much harder is it to care for a family member when fingers are being pointed at you.

In a different society, Ms Spikol and the other blogger she cites with approval wouldn't be so insulated from everyday human experience. She would be part of "village life," with an intimate awareness of the people around her, not to mention empathy.

In our western society, it's very easy to tear yourself away from the fabric of your society and create a selective alternative world for yourself. You surround yourself with certain types of people and block out all the rest - such as those raising families.

Fortunately, most of us are grounded in reality.

I don't know how non-western societies work, but if we had different cultural norms in play the parents of Jani would have a much easier time.

So it's possible to have a highly jaundiced view of psychiatry while still acknowledging basic home truths. We're smart people - we see the nuances.

Anyway, looking forward to more of your comments.