I Was Adam Lanza
from part I of III
from part II of III
The year is fast drawing to a close, and before I leave for the holidays I want to express how grateful I am for how well my oldest son is doing. For how well each of us in our household is doing. We are still on the journey, but Chris is now spending more time steering the boat and Ian and I are quite content after all these years to be merely the passengers.
What’s different about this year than last? One big observation that I have is that Chris is losing the “flat affect.” When he began singing in public in earnest a couple of years ago, he had a beautiful voice, but his facial expressions and physical mannerisms were stiff. Not so much now. A friend from church who observed Chris while he underwent the Tomatis Therapy, told me she noticed when he sings in the church choir that he is developing the body/mind connection. This was borne out when I saw Chris perform in the Christmas pantomime. He was much more expressive on stage than he was in last year’s pantomime.
Chris has a girlfriend! She shares his love of musical theater. Hurrah! She also has a car to take him to rehearsals and back. Hurrah! Chris does not yet have a driver’s license. Perhaps a goal for the New Year?
He has friends! They are all around my age or older (horrors), but they share his passion for music and throw some great parties. Chris has spent many lonely evenings after he was first hospitalized almost nine years ago.
While Chris still has further capacity to grow and learn, recovery is to be expected for each of us if we have the patience, wisdom and fortitude to stay the course.
I wish you all the best of the holiday season.
Tomorrow shall be my dancing day An old English carol Turn up the volume
By Faith Rhyn
Parents will do anything to try to help. They will miss work, they will fill out forms. They will take out loans and they will even, if asked to, hold their own child down, believing that it is what must be done to help.
I don’t think parents realize the exchange they are making when they buy into ideas and treatment that, over time, have the potential to erode some very basic relational/trust bonds between child and caregiver. When I was in the midst of recognizing what had gone wrong in my story, I angrily told my mother, “You believed the professionals over me! You even trusted the professionals over yourself…and they didn’t even know what they were talking about!”
When the professionals teach mothers to see their children as ill, both mother and child are harmed in that they lose something essential to the parent-child relationship, which is the ability to see their children clearly, with compassion, love and a commitment to their brightest possible futures.
Read more of Faith Rhyn’s post here
The following article is from Pat Risser’s archived website www.patrisser.com June, 1998 also printed in Psychiatric Services. (Thanks to Maxine for sharing it at the ISEPP discussion group)
THE DOWNSIDE OF THE FAMILY-ORGANIZED MENTAL ILLNESS ADVOCACY MOVEMENT
by Sylvia Caras
Ms Caras, a disability rights advocate, is coordinator of electronic mailing lists for The Madness Group, an Internet service for users or former users of mental health services. This article was from a column printed in “Psychiatric Services”, June, 1998
Groomed, mature, confident, the family advocate articulated from the podium — carefully, with strength: “The horror of mental illness …”
I felt as if a laser were searing me, shattering my sense of myself as a member of a caring family.
I heard “the horror of your illness,” “horror … you,”
“horror,” “horror,” “horror”
The speaker was telling me what parents felt,
what my children wouldn’t tell me,
what my sister feared.
I felt an intruder. Afraid to speak, I tried to make myself outside as small as I felt inside — shamed, vulnerable, unwanted.
I imagined shaking hands with her, that family advocate. I imagined her wanting to wipe off the touch of my horror on her skirt.
We were at the plenary assembly of a federally sponsored annual meeting reporting the results of innovative community mental health programs.
I sat with 250 invited guests at the Holiday Inn and listened as, again from the podium, another mother brandished the “tragedy of mental illness.” At the word “tragedy,” many in the audience sighed together in shared grief. Even though my own family was not like this, I conjectured visiting my parents, reaching out for an embrace, and watching their hopelessness as they greeted their tragedy. I felt so dishonored.
That was in the fall of 1993. Until that time, I had been facilitating a local mood and melancholy support group. I had attended local mental health system improvement meetings and even a few national conferences. I had met friends and families who were caring and supportive. But I was new to national advocacy and that was my introduction to the powerful, well-funded mental illness lobby of families whose mission is to make the family issues central, to reveal the family pain, to spare the family image. Later I learned how in 1979 families had organized to protect themselves from blame, how they had put forward a biological model of disease, and how they were now lobbying, with the pharmaceutical and medical industries, for research dollars to support the biohealth approach to managing behavior.
Now, in 1997, I’ve served on boards and led groups and gone to conferences. Now, I have seen the families’ relief at finding exoneration become an ambition to medicate social disarray. I’ve felt their shunning since I started publicly to reformulate what I thought about my own 1987 experiences with the mental health system.
The family advocacy I watch seems to focus on the family’s misery, the family’s despair, the family’s efforts and frustrations, the family’s engrossment with itself. Despite a convincing collection of serious diagnoses, hospitalizations, and treatments, we who get on with our lives and offer ourselves as examples of recovery are dismissed as not really ill, exceptions, misdiagnosed. Our experience is not valued.
Instead, the idea of the loved one that is held on to is of one terribly, terribly sick — without hope. To me, this is an example of self-absorbed collateral family members intent on stilling the patient’s voice: the primary voice. By suppressing this voice with, if needed, handcuffs, restraints, sedation, seclusion, family advocacy has a chilling effect on the civil rights of individual loved ones. These violent interventions make me wonder what this loved voice might reveal if it were allowed to speak?
But the voice is co-opted by family advocates who don’t consider the impact of their patronage on the loved ones, discounting the loved ones as unaware of what they, these loved ones, themselves need. Who is well served by this reproduction of stigmatizing, patronizing sympathy, these repeated images of disturbance? I know I am wounded by the advocates’ language.
What I want from those who love me is not sympathy. I want my family members to welcome me, as me, just for being me. And I want to hear the language of respect.
Words express and interpret; words include and exclude; words matter. Verbal categories mold thinking; verbal categories can contribute to integration or to discrimination. Family advocates shape and use words and ideas in ways that seem to me to change the meanings so much that for the sake of clarity, different words should be used.
Family advocates regularly breach privacy by telling their children’s stories. These stories are not family property. They belong to the primary patient, not to the family. But family advocates tell of their loved one’s labels and behaviors.
So urgent are the wishes of active family advocates for personal relief that they use their children’s voices, disallow independence, and sensationalize their children’s anti-social activities. I have never heard family advocates assert that they have informed consent to tell these stories. I have rarely seen parents beside their own child, testifying together in advocacy for the same goals.
Not all families are so authoritarian. But authoritarian families curtail growth with coercive interventions and a flourishing fundamentalism, using fear and polarities, displaying no tolerance for ambiguity, no flexibility, accentuating the unnegotiable authority of the medical and psychiatric professions. In any social setting, rules must be learned; then rules must be tested and questioned and retested to be sure they are still applicable; that is the way of maturing. Some families understand the many parts and obligations of parenting. Some family members seem to be grieving for who they remember their loved ones were at some earlier time, while objecting to who those loved ones actually are now. Perhaps the hardest, arguably the most important part of parenting, is to trust the child enough to let go. Even children with disabilities deserve the chance to be let go.
Moving counter to social trends of diversity, globalization and openness, the family advocacy movement fragments, segregates, isolates, imposes secrecy, shames. I believe today’s mental health approaches will be remembered along with the Salem witchcraft trials as a dishonorable scapegoating of transformative experiences.
As a person with a disability, what I want is acceptance. When you speak of my life as a tragedy, you are robbing me of my dignity. I want you to see my potential, and to stop sensationalizing the family despair. I don’t want to uplift you with my pain. If you can’t love me as me, or accept me, or respect me, at least create a life for yourself separate from me. Today’s family organized advocacy stigmatizes your loved one, me, you, all of us.
Instead of seeing disease, listen.
Instead of discussing medication and non-compliance as an inability to understand one’s condition, listen to your loved one’s objections.
Instead of thinking how you gain, think of what, with medication, your loved one loses.
Instead of forcing your loved one into unwanted treatment, attend to what is wrong with services, attend to why services are refused; listen to the experiences.
Put the well-being of your loved ones above your wish to fence them off.
Truly listen, for just a moment.
Find the worth — the flair, the ingenuity, the ability.
See that worth, not disease.
Hear hope, not horror.
Reprinted by permission of the author.
I’ve hand-picked some of the more interesting blog posts from the past few days that focus on the Newtown tragedy. With one notable exception.: Thoughts about David Oaks
Can Antistigma Campaigns Be Improved? A Test of the Impact of Biogenetic Vs Psychosocial Causal Explanations on Implicit and Explicit Attitudes to Schizophrenia
Tania M. Lincoln1,2, Elisabeth Arens2, Cornelia Berger2 and Winfried Rief2
from The Schizophrenia Bulletin
In the hope to reduce stigma, campaigns have been emphasizing biogenetic (BG) explanations of schizophrenia and have been promoting the concept of “schizophrenia is an illness like others.”15–17 For example, the “changing minds” program by the Royal College of Psychiatrists18 lists “changes in the structure of their brains,” “infections before they were born,” “disorder appears to run in families,” and “chemical messengers in the brain … are not working correctly” before mentioning any psychosocial (PS) cause. The National Alliance on Mental Illness19 lists no explicit PS causes of schizophrenia but states that “the brains of people with schizophrenia are different from the brains of people without the illness,” “schizophrenia seems to be caused by a combination of problems including genetic vulnerability and environmental factors that occur during a person’s development,” and recent research has “identified certain genes that appear to increase risk for schizophrenia.” Similarly, the World Psychiatric Association antistigma initiative “Open the Doors”20 states that “a predisposition is inherited” but that an “environmental trigger,” such as “complications during the mother’s pregnancy or labor,” “prenatal exposure to virus,” or “complications during pregnancy and delivery,” must also be present to bring on the “disease.”
There is reason to assume that antistigma programs might be improved by promoting a diathesis-stress model of schizophrenia.21,22 The diathesis-stress model, which is widely accepted in the scientific field, acknowledges genetic and early biologic developmental risks along with environmental stressors, such as life events, daily stressors, family communication, and trauma as relevant risk factors.23–29 Its potential usefulness as a means of reducing stigma seems to be supported not only by the theoretical reflections about the possible effects that varying information is going to have on illness attributions and stigma but also by an array of empirical findings. On the one hand, it seems reasonable to assume that if the causes of mental health problems are attributed to factors outside the control of individuals (eg, biological factors), people’s reactions will be less negative and patients and families will experience less blame.30–32 So far, however, this assumption has only been supported in one experimental study carried out with male students by Mehta and Farina,33 who found a disease view to be associated with less blame. On the other hand, it has been argued that BG explanations might cause the disorder to be viewed as more fundamental and immutable,33,34 exacerbate the “stickiness” of the mental illness label, and strengthen links to other undesirable characteristics.31 In support of this, a large number of studies have found biological explanations to be associated with higher levels of stigma and social distance, while this has not been shown for PS explanations.7,15,35,36 For example, in representative population surveys carried out in Germany, Russia, and Mongolia, it was found that the more respondents endorsed a brain disease as a cause, the more dangerous they believed a person with schizophrenia to be and the more desire they showed for social distance.7,37 The analysis of data from 601 adult respondents to a US telephone survey revealed genetic attributions to be associated with decreased optimism that a mental health professional could help with the problem.38,39 In their experiment, Mehta and Farina33 found that students who were provided with a disease view were prepared to apply more electric shocks toward fellow students whom they believed to have a history of mental disorder than students provided with a PS view.33 Finally, in a trend analysis of data from 2498 participants in Germany, Angermeyer and Matschinger40 found that as biological causes are being more widely acknowledged by the public, the desire for social distance toward people with schizophrenia has increased.
Read more of this study here.
Those of you who follow my blog will know that I often italicize the word “schizophrenia” because I find it a catch-all term used by the medical profession for a condition they know little about. Many people attribute their schizophrenia to early childhood trauma, others claim that their schizophrenia cleared up after an undetected medical condition was discovered and treated, and some claim that the medication they were on triggered psychosis. I have a foot in all camps for a very simple reason. If the medical profession doesn’t know what causes schizophrenia in individuals, then, in order to help my son, I should try to find a likely explanation for what caused his condition, and then learn how to heal it. In practical terms, this means that Chris and I try many kinds of healing modalities. These methods aren’t offered by your general practitioner or psychiatrist.
Chris and I have been on two recent adventures that I haven’t written much about. The first adventure began last June when Chris and I underwent scalar energy work. You can read about our experiences here, so I won’t go into the details now of what the therapy involved. The shaman, or “scalar energy guy,” as I like to call him, was puzzled by the results of the work he did on Chris. He felt he had cleared Chris of all his early traumas, but a blockage continued to show up when Chris performed the color exercise. So, he took a new photoimaging of Chris’s brain. What he found were two dark masses. The first covering the entire pre-frontal cortex and the second in the temporal lobe area behind his ear. I then wrote to the hospital that did Chris’s original MRI when he was first hospitalized almost nine years ago. The MRI had revealed nothing abnormal. I then sent the original MRI with the superimposed photoimaging of Chris’s brain to the neurologist husband of a friend of mine. The neurologist found nothing abnormal about the areas the scalar energy guy was concerned about. While the neurologist’s findings were a huge relief to me at least, the scalar energy guy feels that there is something going on that remains undetected. “Welcome to schizophrenia!” is all I can say. Short of drilling into Chris’s brain, the mystery remains for now.
Today Chris came along with me for his first visit with the “plant power guy,” who has been treating me for several months with energy captured from plants, not plant extracts. There’s a difference. It’s power, not actual plant extracts like you would find in homeopathy. Apart from that, I can’t explain what this guy does, and one reason is that the two-way conversation is in French. I’m just not that good in French to probe into this latest subject. The scalar energy guy knows the plant power guy, and was curious to find out what he would see in Chris.
Keep in mind that the plant power guy, who is actually trained as a medical doctor, does not want to know the patient’s medical complaint or past diagnoses. All he wants to see is a recent blood test, and all he wants to know is if the patient has ever had an operation or suffered a broken bone. So, knowing nothing about Chris’s schizophrenia diagnosis, he would not be able to leap to conclusions based on the diagnosis.
The plant power guy, after running his tests, told Chris that he has an almost non-existent immune system. That’s pretty dramatic, I’d say. It’s weird, too, because if that were the case, I would have thought that Chris would have a history of colds and various other immune-related illnesses, which he doesn’t.
Unless, of course, schizophrenia, Chris’s particular “illness,” is a manifestation of a disorder of the immune system.
I pulled an abstract (1999) from off the Net, which, as usual, makes me wonder if the authors were funded by pharma. I’ve underlined the juicy bits below. The authors claim that antipyschotic medication activates the specific immune system and increases antibody production. This may very well be true, except that Chris is on an antipsychotic and yet his immune system continues to set off alarm bells. My conclusion is that whatever the antipsychotic may be doing for Chris, it isn’t working on his immune system, and I certainly don’t want him on higher doses of an antipsychotic to bring his immune system up to par. What remains to be see is what plant power will do for Chris over the course of the next year.
1. Eur Arch Psychiatry Clin Neurosci. 1999;249 Suppl 4:62-8.
The role of immune function in schizophrenia: an overview.
Müller N, Riedel M, Ackenheil M, Schwarz MJ.
Psychiatrische Klinik, Ludwig-Maximilians-Universität, München.
Immune alterations in schizophrenia have been described for decades. However, modern immunological methods and new insights into the highly developed and functionally differentiated immune system allows an integrative view of both, the older and also recent findings of immunological abnormalities in schizophrenia. Both, the unspecific and the specific arm of the immune system seem to be involved in the dysfunction of the immune system in schizophrenia. The unspecific “innate” immune system shows signs of an overactivation in unmedicated schizophrenic patients, as increased monocytes and gamma delta-cells point to.
Increased levels of Interleukin-6 (IL-6) and the activation of the IL-6 system in schizophrenia might also be the result of the activation of monocytes/macrophages. On the contrary, several parameters of the specific cellular immune system are blunted, e.g. the decreased T-helper-1 (TH-1) related
immune parameters in schizophrenic patients both, in vitro and in vivo. It seems that a TH-1-TH-2 imbalance with a shift to the TH-2 system is associated with schizophrenia. During antipsychotic therapy with neuroleptics, the specific TH-1 related immune answer becomes activated, but also the B-cell system and the antibody production increases.
PMID: 10654111 [PubMed – indexed for MEDLINE]
Matt Samet writes in The Other Side at the Mad in America site, about benzo withdrawal and the spiritual lessons he learned. Many aspects of his journey are also applicable to recovery from schizophrenia – to take the longer term view, and learn to make the most of the downtime. I’ll expand on his point below to include parents and family members. As a parent, I wanted Chris to be fully recovered as quickly as possible, and there were long periods then and there still are, when focusing on short, medium, or long term goals, is very discouraging and self-defeating.
How did you do it — how did you get better? (And I am better, almost completely so!) And of course, “Will I get better too?”
The easiest answer and the first one I turn to is also the simplest: time. I did my research, realized it would likely take months and years — not weeks — for my brain and nervous system to normalize to something resembling a baseline state, and I made my peace as best I could with a time span then ultimately unknowable, even as I craved nothing more than its end. Even as I prayed for a fast-forward button on my very life so that I might wake up some magical, sun-soaked morning no longer paralyzed by a swarm of profound and horrific symptoms.
But time is only half the equation, because the true crux is what you do with that time. There is no fast-forward button on life, and I don’t believe there should be. Why treat your stint on Earth, even the darkest hours, like slogging through an eight-hour shift at some crappy, low-paying job?
Read more here
From today’s New York Times
His physical injuries healed, but his mental illness persists. More than anything, Mr. Salomon does not want to be sick, so much so that he does his best to ignore the voices he says he still hears, denying them to most people who ask. He feels comfortable talking about his illness in group therapy, but does not like discussing it elsewhere. “I don’t know how to explain it to anyone,” he said.
It scares him that he will have to take medication for the rest of his life, both for schizophrenia and for diabetes. He also has a learning disability, which prevented him from advancing in school past the sixth grade. He excels at math, he says, but has trouble with reading and writing.
It is discouraging that Mr.Salomon tries to ignore his voices – I wonder if he or those around him are aware of the Hearing Voices Network and its way helping people to appreciate voices as messengers of themselves. It bothers me that the the reporter unquestioningly writes that he will have to take medication for the rest of his life. It bothers me that the story does not enlighten readers by connecting the outcome of diabetes to the medication. I wish that these stories weren’t so focused on the supposed sadness of “schizophrenia” and instead conveyed a more positive message.
Last Sunday during lunch, I found myself having a lively discussion with two transgendered individuals (male to female). The lunch followed a screening of a documentary film entitled Entre Il et Ailes (crudely translated: Between He and Wings.) Christa, seated opposite me, and I are at best casual acquaintances. Chloe came along as a guest of another member. Christa and I are both members of a group that meets quarterly to discuss the many aspects of consciousness, so we have occasionally crossed paths. While munching our vegetarian fare, Chloe, Christa and I, shared observations on the tediousness of applying daily make-up. “I thought it would be fun,” said Chloe, while Christa nodded in agreement, “but after six months went by, it was a chore.” I hear you, Chloe.
Entre Il et Ailes is the story of Christa’s sex change operation and her journey before and after.
The film is delightful, not at all sad, and actually very funny. This was a deliberate choice by director, Laurence Périgaud, who was on-hand at the screening. Périgaud said that all the films she had seen on transgendered individuals took on a sad air and that’s not the tone she wanted to convey. Incidentally, that’s exactly the intention with my schizophrenia blog – to show the upside, the hopeful side, the funny side, and always the human side of what others stereotype as “way beyond the norm.”
I am not in Kansas anymore ( and neither are you!), to paraphrase Dorothy in The Wizard of Oz. If you are a parent of someone with a schizophrenia or related diagnosis, our perspective of “normal” took a huge hit when our relative veered from the norm. Oz is a most interesting world.
Entre Il et Ailes
Devenir femme à 60 ans
un film de Laurence Pérgaud
“It was time to do some work of our own. If Tyler felt alienated and alone, it was because we had failed to acknowledge—and accept—his difference. I was so focused on the conceit that my son would be like Kevin Costner’s character in Field of Dreams that I failed to see the son I was lucky enough to have. It was time to get to know Tyler.”
This story* from the National Journal reminds me in a different way of Rupert Isaacson’s journey with his autistic son, which he recounted in the memoir The Horse Boy. Isaacson tells an unusual story of riding horses in Mongolia and visiting Siberian shamans in a search of healing. He had early on noticed that his son had an affinity with horses and shamans so decided to immerse himself in what his son was interested in to see if this had a curative effect. Isaacson makes the point that if your son or daughter is interested only in trains and numbers, then indulge their love for trains and numbers by joining them in their pursuits. Further reading: interesting interview with Isaacson
How Two Presidents Helped Me Deal With Love, Guilt, and Fatherhood
Guidance from Bill Clinton and George W. Bush taught the author how to accept and understand his son’s Asperger’s syndrome.
By Ron Fournier
Updated: December 4, 2012
November 29, 2012