Life is short

National Public Radio broadcast a thoughtful obituary this week about Judi Chamberlin the author of On Our Own and founder of the Mad Pride movement. You can listen to it through this link:
Chamberlin was one of the first to use the “psychiatric survivors” tag and while we didn’t agree philosophically about how our mental health system needed to be reformed, I admired her tireless advocacy and believe that her’s was an important voice.
I think Chamberlin’s lasting contribution is her insistence that persons with mental illness have rights and need to be heard, especially when it comes to treatment practices. When Virginia governor Tim Kaine appointed a blue ribbon panel to investigate the shootings at Va. Tech that left 33 dead, I urged him to include a consumer on the panel.
You can read my editorial at:
The governor ignored my suggestion.
The controversy comes, of course, in deciding when a person’s thinking is so impaired that someone else needs to make decisions for them. Some persons with a mental health diagnosis believe no one should ever be allowed to make any medical decisions for them. On the other end of the spectrum are those who claim that persons with mental illnesses are so impaired that they should not be involved in any treatment decisions.
I’m a big supporter of advance directives – legal instructions that a consumer fills out stating what they do and don’t want done to them if they become psychotic. Unfortunately, doctors often won’t follow advance directives. They also can be undercut by attorneys who ask someone, when they are psychotic if they still want their advance directive to be enforced. When they person says, “No!” the directive is tossed out.
I was also on NPR this week on RadioWest’s KUER in Salt Lake City. The interview was conducted in November when I spoke at the Utah National Alliance On Mental Illness state convention.  It was an interesting interview for me because the host, Doug Fabrizio, had actually read my book. Most radio reporters don’t have a clue what my book is about when they interview me, so his questions made our conversation more interesting – at least to me.  You can heard the interview here:
This has been a difficult week.  A long-time friend of mine died Monday night after battling MS for about thirty years. Patti and I were in the room with her husband when she passed away. It was a reminder of how fragile all of us are.
Life is short — so enjoy your health, your good fortune and help others.
About the author:

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

Learn more about Pete.

Comments

  1. John Lindsey says

    The survivor movement and Mad Pride are obstructionist. They try to stop every effort that is made to improve mental health laws. Many of its leaders have their disorder under control so they are capable of supervising their own recovery and treatment. They refuse to admit that not everyone is capable of that and argue against helping people who are homeless and in jail. They have no sympathy for psychotic persons who commit crimes. Do you think people with cancer are proud of having it? Cancer Pride. Ha! Why would anyone be proud of having a severe mental illness?

  2. John Lindsey says

    The survivor movement and Mad Pride are obstructionist. They try to stop every effort that is made to improve mental health laws. Many of its leaders have their disorder under control so they are capable of supervising their own recovery and treatment. They refuse to admit that not everyone is capable of that and argue against helping people who are homeless and in jail. They have no sympathy for psychotic persons who commit crimes. Do you think people with cancer are proud of having it? Cancer Pride. Ha! Why would anyone be proud of having a severe mental illness?

  3. Elizabeth Flynn says

    My condolences to you and to Patti on the loss of your friend. I am glad you were there to support her husband.

    I imagine that you both felt fairly inadequate at helping with the task, but you are wrong. You cannot possibly know how meaningful it is at a time like that, to have someone there who is not afraid despite the discomfort.

    Best wishes to you both.

  4. Elizabeth Flynn says

    My condolences to you and to Patti on the loss of your friend. I am glad you were there to support her husband.

    I imagine that you both felt fairly inadequate at helping with the task, but you are wrong. You cannot possibly know how meaningful it is at a time like that, to have someone there who is not afraid despite the discomfort.

    Best wishes to you both.

  5. Dear Pete,
    Thank you for recognizing the contributions made by Judi Chamberlin. Perhaps through reasoning there is a way to find some middle ground between the different philosophies of mental health care reform.

    Your son Mike and I are labeled mentally ill, that must make you mentally well. Should the mentally well people be viewed as more intelligent than the mentally ill people? Are psychiatric medications the only treatment option for the mentally ill?

    Should we the people of the mentally ill ever question if there are any other successful, less harmful alternatives? Should we the people of the mentally ill treat cases like Susannah Cahalah, as an anomaly and not consider the possibility that an underlying condition took away our right to be among the mentally well?

    As reported in the Washington Post several years ago, there is strong evidence that early childhood exposure to lead is a risk factor for criminal behavior, including violent crime in adulthood. The authors of the article Organic Affective Illness Associated With Lead Intoxication, published in the American Journal of Psychiatry, Nov. 1984, state:

    “We suspect that ignorance about the psychiatric and medical manifestations of lead intoxication and about the sources of occupational exposure to lead contributes to the failure to recognize, report, and properly treat psychiatric disturbances associated with lead intoxication…Since psychiatrists receive little information about toxic behavioral syndromes during training, toxic etiologies of psychiatric syndromes and, in particular, the less spectacular manifestations of intoxication are often not recognized.”

    It is possible that some, if not many, of the violent criminal offenders you met in various jails and prisons have lead poisoning contributing to their symptoms of mental illness. Should we continue to ignore the fact that they can be helped through Chelation Therapy? This could be the problem with pedophiles and sexual offenders, yet there is no research being done on this. The city of Miami forces sexual offenders to live under the Julia Tuttle Causeway in a tent community. Don’t you think it is worth putting up a fight to have mental heath care reform investigate lead poisoning as a possible cause for symptoms of mental illness?

    As a journalist, I would encourage you to use your research skills at the medical library. There is a wealth of information there and it is FREE.

    John posted: “Why would anyone be proud of having a severe mental illness?”

    Should the mentally well have pride and the mentally ill be ashamed?

    What happens when we classify people into this sort of category?

    This site has interesting facts about the people of the mentally ill.

    http://www.manic-depression.net/bipolar/famous_people_with_bipolar_disorder.htm

    “Many famous people have been affected by bipolar disorder. It is often suggested that genius and mental illness are linked. In the case of bipolar disorder, many of those who suffer from the disorder also have exceptional gifts. Above average creativity is sometimes considered a symptom of bipolar disorder…Many authors and poets are thought to have suffered from bipolar disorder. Hans Christian Anderson, Charles Dickens, William Faulkner, Ernest Hemingway, Edgar Allan Poe, Robert Louis Stevenson, Mark Twain, and Virginia Woolf are famous writers who had bipolar disorder. Lord Byron, Ralph Waldo Emerson, John Keats, and Sylvia Plath are poets who suffered from manic depression.”

    I had the opportunity to meet Pulitzer Prize winning author William Styron. He was the key note speaker at a NAMI convention back in 1999. I asked him in front of a large audience whether he could relate to periods of mania and creative genius, and if he felt his correct diagnosis was Bipolar Disorder. He paused for a moment, thought carefully and his response seemed to enlighten the entire audience, as well as surprise himself. He graciously accepted a very stigmatizing label of mental illness by shaking his head and saying “yes, yes, I can relate to mania and yes, I do have Bipolar Disorder”.

    We the people of the mentally ill have many talented writers on our side. Perhaps if Mike helped you write your books you would be a Pulitzer Prize winner instead of just a runner up. I’m being facetious of course. I have a tremendous amount of respect for your work and efforts.

    Mental illness is extremely varied and complex. The different schools of thought assessing human nature and behavior have created different theories and perspectives. Is it any wonder that America’s mental health care system is such a mess?

    Among the many components to mental illness are individuals who experience religious delusions. Joseph Campbell observed that the schizophrenic is drowning in the same waters in which the mystic swims with delight. Should people like Dr. Deepak Chopra and Neale Donald Walsch be on Haldol? or are they for real?

    On the other hand, Dena Schlosser, the woman from Texas who cut her baby’s arms off, heard God commanding her to do this. Why would God tell any parent to kill his child?

    “Now it came about after these things, that God tested Abraham, and said to him, Abraham!’ And he said, ‘Here I am.’ And He said, ‘Take now your son, your only son, whom you love, Isaac, and go to the land of Moriah; and offer him there as a burnt offering on one of the mountains of which I will tell you,'”(1. Gen. 22:1-2).

    Abraham could have had the same illness as Dena. Actually, God sacrificed his only Son…hmmm… perhaps this explains things:

    http://www.theonion.com/content/node/28484

    Please keep an open mind towards those involved in Mad Pride or any other organization that seems to have an opposing view towards mental health care reform.

    Consider maintaining Mental Equality.

    2.

    .

    When I was first diagnosed as being a mentally ill person, I was hurt, ashamed, embarrassed and did not know how to deal with it. To make matters worse, my husband pulled out a college book from an Abnormal Psychology course with a picture of a grandmother, a mother, a daughter and a 3 year old great-granddaughter; four generations of women all diagnosed with bipolar disorder. My husband told me my illness was hereditary and that I should never have children because they would be “crazy” like me. A psychiatrist told me that I would be mentally ill for the rest of my life and would have no other choice but to take medication for the rest of my life to control it. A close friend of mine confided in me that her sister had been suffering from schizophrenia for many years and she shared with me a list of famous people who had symptoms of mental illness. I was shocked to see so many brilliant individuals listed with the same mental illness that I had, still it did not do my pride much good. I felt like such a looser.
    After two years of battling manic episodes requiring hospitalization and suffering numerous side effects from antipsychotic medications, I sought a new direction; one of learning everything I could about bipolar disorder. I attended bipolar support groups, read books and took a course in Abnormal Psychology. I discovered that for the first time in my life I had a learning disability. Great, not only was I crazy, but somehow I also got stupid as well. Attending support groups was extremely helpful as I met people from all walks of life labeled mentally ill.
    At my wits end in dealing with manic episodes, I was blessed to find help through professionals practicing complimentary medicine. Testing through a medical doctor who uses an Orthomolecular approach revealed high levels of numerous chemical toxins, including past exposure to lead.
    From day one of my spontaneous mental illness, my parents had related my condition to chemicals I had worked around for the past 13 years. I trusted psychiatrists over my own parents and believed I had inherited mental illness from my father. The concept of mental illness being inherited is very convincing. My symptoms were accurately described in the DSM-IV as Bipolar Disorder, I did not think it was possible to have these symptoms from chemical exposure, but I wanted to find out if it was possible.
    I discovered a wonderful place that offers FREE information on not only mental illness, but any kind of illness. The people who work there actually go out of their way to help you and you can stay there from dawn til dusk. This wonderful place is called the medical library. I spent countless hours at the medical library searching through information far beyond my ability, using my Mosby’s Medical Dictionary to try and understand big words like neuropsychological. With the help of the librarians I was able to dig out enough information to gain medical support of the opinion Toxic Encephalopathy and settle a worker’s compensation
    Exposure to Lead and other heavy metals is very common. As reported in the Washington Post several years ago there is strong evidence that early childhood exposure to lead as a risk factor for criminal behavior, including violent crime in adulthood. It is very possible individuals you have met in jail who have committed violent crimes have lead poisoning contributing to their symptoms of mental illness. Chelation therapy is what they need, not anti-psychotic medications.

    I experienced symptoms of severe mental illness. I have been labeled with Bipolar Disorder and even Schizophrenia. I do not take antipsychotic medications.

    John questions why would anyone be proud of having a severe mental illness. Please tell me how I should feel having the label of mental illness on me? How do you feel towards your son who is labeled mentally ill? Ashamed? Embarrassed? Hurt? Fearful towards him?

    Can you only be proud of him if he is compliant and takes strong anti-psychotic medications that have harmful side effects? What happens if those medications no longer control his psychotic behavior, or if like Ryan Ehlis, psychosis is a side effect of those medications.
    I am labeled mentally ill, I lived through severe mental illness, I was compliant with medicaitons, they did not control manic episodes

    . The survivor movement and Mad Pride are obstructionist. They try to stop every effort that is made to improve mental health laws. Many of its leaders have their disorder under control so they are capable of supervising their own recovery and treatment. They refuse to admit that not everyone is capable of that and argue against helping people who are homeless and in jail. They have no sympathy for psychotic persons who commit crimes. Do you think people with cancer are proud of having it? Cancer Pride. Ha! 3.

    The DSM-IV doesn’t specifically cite its sources, but there are four volumes of “sourcebooks” intended to be APA’s documentation of the guideline development process and supporting evidence, including literature reviews, data analyses and field trials
    4.

    You will find your son’s illness of bipolar disorder in college text books under the title of Abnormal Psychology. That fact probably does not instill much parental pride in anyone. I know I was ashamed when I was forced to read the symptoms of mania I experienced made me into an abnormal person.

    Judi Chamberlin the author of On Our Own and founder of the Mad Pride movement. You can listen to it
    5.

    The human 6. body is an exquisite machine, partly because it maintains functionality in a variety of environments. Humans can thrive conditions ranging from the arctic to the equator, and with a variety of diets and lifestyles. Part of the reason for this adaptability is the body’s ability to maintain homeostasis.

    Homeostasis is a fancy word meaning “equilibrium,” and it entails many interwoven variables that are amazing to consider. Temperature is among the most straightforward of these. The body sweats to keep cool and shivers to stay warm. But the human body is masterful at balancing many other factors. Most are subtler, involving the regulation of hormones and other bodily chemicals. All of the body’s systems self-regulate using an intricate coordination of three principle roles: signal reception, centralized control and action. All of the body’s systems work together to maintain balance in the body, but various systems do have specific roles. Two of the most important systems for maintaining homeostasis are the nervous and endocrine systems. Basic bodily functions such as heart rate and breathing may be stimulated or slowed under neural control. The nervous system helps regulate breathing, the urinary and digestive systems, and it interacts with the endocrine system. For example, part of the brain triggers the pituitary gland to release metabolic hormones in response to changing caloric demands. Hormones also help adjust the body’s balance of fluids and electrolytes, among other key roles in all the body’s systems. Less energetically expensive, but no less important, roles in the maintenance of homeostasis include the lymphatic system’s ability to fight infection, the respiratory system’s maintenance of oxygen and proper pH levels and the urinary system’s removal of toxins from the blood.

  6. Benjamin Carson says

    I read your Washington Post editorial with interest and noted that you forgot another voice that is missing from the table.
    Yes, having a consumer voice is good, but so is having a family member’s voice. We are the ones who get left out of the process and yet we are the ones who have to pick up the pieces whenever someone gets ill.
    What about our voices?

  7. Benjamin Carson says

    I read your Washington Post editorial with interest and noted that you forgot another voice that is missing from the table.
    Yes, having a consumer voice is good, but so is having a family member’s voice. We are the ones who get left out of the process and yet we are the ones who have to pick up the pieces whenever someone gets ill.
    What about our voices?

  8. Dear Pete,
    Thank you for recognizing the contributions made by Judi Chamberlin. Perhaps through reasoning there is a way to find some middle ground between the different philosophies of mental health care reform.

    Your son Mike and I are labeled mentally ill, that must make you mentally well. Should the mentally well people be viewed as more intelligent than the mentally ill people? Are psychiatric medications the only treatment option for the mentally ill?

    Should we the people of the mentally ill ever question if there are any other successful, less harmful alternatives? Should we the people of the mentally ill treat cases like Susannah Cahalah, as an anomaly and not consider the possibility that an underlying condition took away our right to be among the mentally well?

    As reported in the Washington Post several years ago, there is strong evidence that early childhood exposure to lead is a risk factor for criminal behavior, including violent crime in adulthood. The authors of the article Organic Affective Illness Associated With Lead Intoxication, published in the American Journal of Psychiatry, Nov. 1984, state:

    “We suspect that ignorance about the psychiatric and medical manifestations of lead intoxication and about the sources of occupational exposure to lead contributes to the failure to recognize, report, and properly treat psychiatric disturbances associated with lead intoxication…Since psychiatrists receive little information about toxic behavioral syndromes during training, toxic etiologies of psychiatric syndromes and, in particular, the less spectacular manifestations of intoxication are often not recognized.”

    It is possible that some, if not many, of the violent criminal offenders you met in various jails and prisons have lead poisoning contributing to their symptoms of mental illness. Should we continue to ignore the fact that they can be helped through Chelation Therapy? This could be the problem with pedophiles and sexual offenders, yet there is no research being done on this. The city of Miami forces sexual offenders to live under the Julia Tuttle Causeway in a tent community. Don’t you think it is worth putting up a fight to have mental heath care reform investigate lead poisoning as a possible cause for symptoms of mental illness?

    As a journalist, I would encourage you to use your research skills at the medical library. There is a wealth of information there and it is FREE.

    John posted: “Why would anyone be proud of having a severe mental illness?”

    Should the mentally well have pride and the mentally ill be ashamed?

    What happens when we classify people into this sort of category?

    This site has interesting facts about the people of the mentally ill.

    http://www.manic-depression.net/bipolar/famous_

    “Many famous people have been affected by bipolar disorder. It is often suggested that genius and mental illness are linked. In the case of bipolar disorder, many of those who suffer from the disorder also have exceptional gifts. Above average creativity is sometimes considered a symptom of bipolar disorder…Many authors and poets are thought to have suffered from bipolar disorder. Hans Christian Anderson, Charles Dickens, William Faulkner, Ernest Hemingway, Edgar Allan Poe, Robert Louis Stevenson, Mark Twain, and Virginia Woolf are famous writers who had bipolar disorder. Lord Byron, Ralph Waldo Emerson, John Keats, and Sylvia Plath are poets who suffered from manic depression.”

    I had the opportunity to meet Pulitzer Prize winning author William Styron. He was the key note speaker at a NAMI convention back in 1999. I asked him in front of a large audience whether he could relate to periods of mania and creative genius, and if he felt his correct diagnosis was Bipolar Disorder. He paused for a moment, thought carefully and his response seemed to enlighten the entire audience, as well as surprise himself. He graciously accepted a very stigmatizing label of mental illness by shaking his head and saying “yes, yes, I can relate to mania and yes, I do have Bipolar Disorder”.

    We the people of the mentally ill have many talented writers on our side. Perhaps if Mike helped you write your books you would be a Pulitzer Prize winner instead of just a runner up. I’m being facetious of course. I have a tremendous amount of respect for your work and efforts.

    Mental illness is extremely varied and complex. The different schools of thought assessing human nature and behavior have created different theories and perspectives. Is it any wonder that America’s mental health care system is such a mess?

    Among the many components to mental illness are individuals who experience religious delusions. Joseph Campbell observed that the schizophrenic is drowning in the same waters in which the mystic swims with delight. Should people like Dr. Deepak Chopra and Neale Donald Walsch be on Haldol? or are they for real?

    On the other hand, Dena Schlosser, the woman from Texas who cut her baby’s arms off, heard God commanding her to do this. Why would God tell any parent to kill his child?

    “Now it came about after these things, that God tested Abraham, and said to him, Abraham!' And he said, 'Here I am.' And He said, 'Take now your son, your only son, whom you love, Isaac, and go to the land of Moriah; and offer him there as a burnt offering on one of the mountains of which I will tell you,'”(1. Gen. 22:1-2).

    Abraham could have had the same illness as Dena. Actually, God sacrificed his only Son…hmmm… perhaps this explains things:

    http://www.theonion.com/content/node/28484

    Please keep an open mind towards those involved in Mad Pride or any other organization that seems to have an opposing view towards mental health care reform.

    Consider maintaining Mental Equality.

    2.

    .

    When I was first diagnosed as being a mentally ill person, I was hurt, ashamed, embarrassed and did not know how to deal with it. To make matters worse, my husband pulled out a college book from an Abnormal Psychology course with a picture of a grandmother, a mother, a daughter and a 3 year old great-granddaughter; four generations of women all diagnosed with bipolar disorder. My husband told me my illness was hereditary and that I should never have children because they would be “crazy” like me. A psychiatrist told me that I would be mentally ill for the rest of my life and would have no other choice but to take medication for the rest of my life to control it. A close friend of mine confided in me that her sister had been suffering from schizophrenia for many years and she shared with me a list of famous people who had symptoms of mental illness. I was shocked to see so many brilliant individuals listed with the same mental illness that I had, still it did not do my pride much good. I felt like such a looser.
    After two years of battling manic episodes requiring hospitalization and suffering numerous side effects from antipsychotic medications, I sought a new direction; one of learning everything I could about bipolar disorder. I attended bipolar support groups, read books and took a course in Abnormal Psychology. I discovered that for the first time in my life I had a learning disability. Great, not only was I crazy, but somehow I also got stupid as well. Attending support groups was extremely helpful as I met people from all walks of life labeled mentally ill.
    At my wits end in dealing with manic episodes, I was blessed to find help through professionals practicing complimentary medicine. Testing through a medical doctor who uses an Orthomolecular approach revealed high levels of numerous chemical toxins, including past exposure to lead.
    From day one of my spontaneous mental illness, my parents had related my condition to chemicals I had worked around for the past 13 years. I trusted psychiatrists over my own parents and believed I had inherited mental illness from my father. The concept of mental illness being inherited is very convincing. My symptoms were accurately described in the DSM-IV as Bipolar Disorder, I did not think it was possible to have these symptoms from chemical exposure, but I wanted to find out if it was possible.
    I discovered a wonderful place that offers FREE information on not only mental illness, but any kind of illness. The people who work there actually go out of their way to help you and you can stay there from dawn til dusk. This wonderful place is called the medical library. I spent countless hours at the medical library searching through information far beyond my ability, using my Mosby’s Medical Dictionary to try and understand big words like neuropsychological. With the help of the librarians I was able to dig out enough information to gain medical support of the opinion Toxic Encephalopathy and settle a worker’s compensation
    Exposure to Lead and other heavy metals is very common. As reported in the Washington Post several years ago there is strong evidence that early childhood exposure to lead as a risk factor for criminal behavior, including violent crime in adulthood. It is very possible individuals you have met in jail who have committed violent crimes have lead poisoning contributing to their symptoms of mental illness. Chelation therapy is what they need, not anti-psychotic medications.

    I experienced symptoms of severe mental illness. I have been labeled with Bipolar Disorder and even Schizophrenia. I do not take antipsychotic medications.

    John questions why would anyone be proud of having a severe mental illness. Please tell me how I should feel having the label of mental illness on me? How do you feel towards your son who is labeled mentally ill? Ashamed? Embarrassed? Hurt? Fearful towards him?

    Can you only be proud of him if he is compliant and takes strong anti-psychotic medications that have harmful side effects? What happens if those medications no longer control his psychotic behavior, or if like Ryan Ehlis, psychosis is a side effect of those medications.
    I am labeled mentally ill, I lived through severe mental illness, I was compliant with medicaitons, they did not control manic episodes

    . The survivor movement and Mad Pride are obstructionist. They try to stop every effort that is made to improve mental health laws. Many of its leaders have their disorder under control so they are capable of supervising their own recovery and treatment. They refuse to admit that not everyone is capable of that and argue against helping people who are homeless and in jail. They have no sympathy for psychotic persons who commit crimes. Do you think people with cancer are proud of having it? Cancer Pride. Ha! 3.

    The DSM-IV doesn't specifically cite its sources, but there are four volumes of “sourcebooks” intended to be APA's documentation of the guideline development process and supporting evidence, including literature reviews, data analyses and field trials
    4.

    You will find your son’s illness of bipolar disorder in college text books under the title of Abnormal Psychology. That fact probably does not instill much parental pride in anyone. I know I was ashamed when I was forced to read the symptoms of mania I experienced made me into an abnormal person.

    Judi Chamberlin the author of On Our Own and founder of the Mad Pride movement. You can listen to it
    5.

    The human 6. body is an exquisite machine, partly because it maintains functionality in a variety of environments. Humans can thrive conditions ranging from the arctic to the equator, and with a variety of diets and lifestyles. Part of the reason for this adaptability is the body's ability to maintain homeostasis.

    Homeostasis is a fancy word meaning “equilibrium,” and it entails many interwoven variables that are amazing to consider. Temperature is among the most straightforward of these. The body sweats to keep cool and shivers to stay warm. But the human body is masterful at balancing many other factors. Most are subtler, involving the regulation of hormones and other bodily chemicals. All of the body's systems self-regulate using an intricate coordination of three principle roles: signal reception, centralized control and action. All of the body's systems work together to maintain balance in the body, but various systems do have specific roles. Two of the most important systems for maintaining homeostasis are the nervous and endocrine systems. Basic bodily functions such as heart rate and breathing may be stimulated or slowed under neural control. The nervous system helps regulate breathing, the urinary and digestive systems, and it interacts with the endocrine system. For example, part of the brain triggers the pituitary gland to release metabolic hormones in response to changing caloric demands. Hormones also help adjust the body's balance of fluids and electrolytes, among other key roles in all the body's systems. Less energetically expensive, but no less important, roles in the maintenance of homeostasis include the lymphatic system's ability to fight infection, the respiratory system's maintenance of oxygen and proper pH levels and the urinary system's removal of toxins from the blood.