Friday, August 7, 2009

Getting everyone on the same page

Yesterday we had a big meeting with all my hospice staff (Lauren, Louise [the back-up nurse], Katrina, and Marie), plus Laurel and Ann [Judy was on vacation], and of course, Marty, Julie and Jim, and me. The idea was to make sure that everyone had the same information, knew what to look out for, when to call hospice, and were coordinating with each other. I was having one of those days when I was just feeling very tired, and I sat in my recliner, often with my eyes closed. Some people thought I was sleeping but I told them I was listening, and I am sure I was awake the whole time. It looks like we'll now have a schedule with someone here from about eleven in the morning till seven or so at night, every day, whether Marty is here or not. This should take some pressure off him as, even if he is here, there can be someone else taking care of getting me the things I need, and just generally keeping me company. There's also going to be a log book where people can leave notes for each other to make sure information gets shared.

At this point, I still feel that I can make most of my own decisions, but I know there are days that I can't (like the days when I had that fever); and in the future I'm sure I will need substituted decision-making more. The important thing is that people are carrying out my wishes for how I want things to be.

After that it was a pretty quiet day. I had called Lisa to reschedule my massage, because of the meeting, so she is going to come today instead. In the afternoon, I had visitors--Joe, Helen, and Cheryl, who are involved in the local self-help organization, and we talked for awhile, but I was getting tired and I think actually did start falling asleep, so they said they didn't want to tire me out, but it was nice having conversations that had nothing to do with sickness or "important" things--we talked about stuff like movies and TV shows we liked (and discovered a shared fondness for the old TV version of "Mission: Impossible"--not the movies).

Wednesday evening I surprised Marty by suggesting we go out to dinner. I hadn't been out of the house for two weeks, and after my shower I was feeling really good. We went to a nearby Greek restaurant where I had a dish I really love--lamb shank braised till it is falling off the bone. It was nice being out and I didn't even get that tired.

Tomorrow I will be going out again to the hair salon, and I need to find someplace to get a pedicure. The place I used to go may be closed (I tried calling and got a "this number is not in service" recording), so I will have to call around. I could go back to the place I went last time but I think I really prefer the whirlpool bath to having my feet just soaking in a big basin). It's funny that with all the "important" stuff going on, this is what's important to me right now. And anything that makes me feel good is something I should be doing.


  1. Hi Judi (sorry for misspelling your name),
    It was good to read that you had a better day. I am glad for the braised lamb and your newfound energy...high tides and low tides. I am still working on getting time off for the meantime, Jim Gottstein was nice enough to edit my letter to here is the latest version...

  2. August 6, 2009
    Dear Oprah Winfrey and friends,

    *CAUTION* Reading this may be hazardous to your well-being. Airing this story will be hazardous to your show (law suits by big PhRMA).

    My name is Cheryl. I am recommending Dr. Jackson's book, Drug-Induced Dementia - a Perfect Crime. She is an internationally known psychiatrist and neurotoxicolgist who dares to tell the truth about the epidemic of poisoning currently plaguing people taking psychiatric drugs, especially children. Here is my story behind this recommendation.

    I trained as a doctor. I became increasingly, severely depressed about the apartheid-way I saw medicine being practiced/taught in the US - spending millions of dollars on middle and upper class people (mostly white, elderly) in the University hospital for heart disease, cancer and other terminal illnesses and the like, while poor people (mostly young, non-white) were dying across the street in the County hospital - that couldn't even afford air conditioning - from infectious diseases (TB, HIV, pneumonia), trauma (gunshot wounds, drug overdoses, accidents) and other treatable diseases.

    Moreover, I worked briefly in East Africa as a doctor, witnessing this same phenomenon on a global level. Upon graduating medical school, I began my internship in NYC at the height of he AIDS crisis. I saw how much of what I was learning about AIDS treatment generally made patients sicker - often killing them faster than their opportunistic infections or the direct toxic effects of the AIDS virus itself (then known as HTLV III, now HIV).

    I had a nervous breakdown. (cont'd)

  3. Over the next several years, I was hospitalized multiple times - one of them lasted for 18 months. I was treated with multiple psychiatric drugs and was even given ECT ("shock therapy"), sent to live in a group home to attend day programs and take medications for the rest of my life as I was told that I would never work again. I witnessed my own emotional, physical and cognitive decline once I was relegated to the category of "mental patient".

    With the help of others who had been where I was (peer support), an ICCD clubhouse (, holistic/alternative healing practitioners/modalities, and spiritual practices, I was able to find the very help that was denied me during the time I was in treatment: a healthy diet, exercise, sunlight, fresh air, time in Nature and supportive, healing relationships. As I traded abusive psychiatric relationships for more nurturing ones, I managed to stay away from traditional psychiatric treatment long enough to begin dealing with my childhood traumatic stress of growing up in an alcoholic family. I then stopped sabotaging my health and well-being with “medication”. As I detoxed from toxic psychiatric drugs, I also began to de-program from the toxic message that there was something wrong with me, my mind and my reactions.

    The truth was that there was something wrong with what had happened to me as a child and what I had witnessed in medical training and abroad - and that this barbarism (economic apartheid) and insanity (xenophobia) continues to reverberate beyond the world of human affairs into the realms of plants, animals and Earth itself.

    I was then able to acknowledge and speak out about the other violence I witnessed, namely the violent and violating nature in which society treats those who are poor, non-white, psychiatrically labeled or otherwise "different" (I neglected to mention that I also grew up gay - another personal trauma given the times and religious background of my family).

    I have fully recovered from psychiatric disability - I was mostly disabled by psychiatry, a mere symptom of society's inability to acknowledge and heal from our collective trauma, self-inflicted violence (SIV). How do we hurt ourselves and our planet?? Read on....

  4. I returned to work, got off of SSDI (Social Security Disability Insurance) and the other entitlements I was receiving while living in poverty, and eventually came off of the psychiatric drugs. I have since been working with others trapped by the effects of unaddressed family-of-origin and other traumatic stress (see and who now live (as I once had) with the self-inflicted violence of addiction, other poor health habits, including consuming psychiatric goods and services while labeled with "mental illness" – all of which are reactions to living in an insane world.

    I had to first realize that what was being proffered as psychiatric "treatment" was nothing other than a traumatic re-enactment of my abusive family-of-origin relationships. By silencing my symptoms, I was being silenced.

    I am now breaking that silence. I gradually realized that I was being complicit in my own oppression/violence/discrimination (= “stigma” or as one leader called it, the “social expiration” that accompanies psychiatric labeling in this country).

    I was doing so by continuing to be a "consumer" of psychiatric goods (drugs) and services. These services were:
    1. Detention & Abduction = Section 35, "pink-papered", cutting me off from contact with friends and family;
    2. Incarceration = forced or coerced hospitalization;
    3. Assault = 'restraint';
    4. Solitary confinement/seclusion/isolation = 'quiet room' and
    5. Controlled chemical and electrical brain damage ('medication' and electroconvulsive "therapy" or ECT, respectively), and – yes,
    6. Brainwashing. I was given a consistent message of hopelessness (diagnostic labeling) as I was being drugged, institutionalized, assaulted, and humiliated while being separated from the people, places and activities that helped keep my identity intact.

    The current practice of biopsychiatry as I experienced it was nothing more than sanitized and sanctioned ritual abuse – as long as one had the insurance to pay for it. There are many, many people, who remain similarly brainwashed by its violent rituals and empty promises of relief - generally through brain damage and socializing people to become mental patients and expect less from life.
    The emerging markets for biopsychiatry are the same as for the tobacco industry – children and people in developing nations. Failing to speak the truth about violence and not offering safe, sane non-violent care (instead of "treatment") to people so affected is THE perfect crime.

  5. Psychiatric drugging is a perfect crime - as are apartheid social institutions, addictions, war and even most chronic illnesses that result from eating "food products", instead of food. Although I have seen images of how livestock are treated by the so-called food industry, I can only knowledgeably address psychiatric violence, aka "treatment". Perhaps if we begin to treat members of our own species well, this will have a spillover effect onto the way we treat other life forms.

    In this age of re-visiting health care costs, do you know how much money Medicaid would save if we stopped being complicit in the toxic drugging of our children and others who suffer from the physical and mental effects of traumatic stress??? Do you know that a CDC epidemiologist Robert Anda MD and internist Vincent Felitti MD have demonstrated research findings ( that if acted upon could revolutionize the way health care is delivered by targeting those most at risk by screening people for just 8 factors related to childhood abuse and household dysfunction - thus saving billions of dollars?

    How? Let us tell you. Please invite Dr. Grace Jackson, Jim Gottstein Esq., Drs. Anda and Felitti, myself and Judi Chamberlain on your show to tell this story and help break the silence.

    According to Dr. Jackson, we are in for an epidemic of drug-induced Alzheimer’s and other dementias of staggering proportions by drugging our children. That is, if they even survive long enough to experience the resultant neurological deterioration since disease, disability and premature death are the more commonly demonstrated "side effects" of psychiatric drugs.

    Lastly, I urge you to read about a landmark legal battle taking place in Alaska campaign regarding this issue at by Atty. Jim Gottstein of the Law Project for Psychiatric Rights.

    Activist Judi Chamberlain is my friend, author of the book On Our Own, mother of the psychiatric survivor movement and a national/global treasure. She is now herself dying after a lifelong battle for people's right to freedom. It is her imminent death that inspired me to write to you.

    Sincerely yours in the Love in Which We All Are,
    Cheryl Stevens

  6. So that's it. It took me as long as it took me to be able get strong enough to allow myself to experience such a painful truth. Then more time to muster the courage to speak it. This is because you set the example. I'll never forget how reading On My Own as a Genesis Club member rocked my world in 1994 or 95 and got me started with MPOWER....anyway, it is hard to express such a profound gratitude. I now see how one person telling their story can erase a lifetime of torture and turn it into someone else's hope and inspire chain reactions of courage.
    I hope you have a sweet day today.

  7. Hi,Cheryl,

    Thanks for the letter. My name is spelled Judi Chamberlin--most people manage to get either one or the other wrong! I was on Oprah twice some years ago, before she became the "touchy-feely" guru and was doing more issue-oriented shows. On one of them I was on with Peter Breggin. I hope Oprah answers your letter. I wrote to her a few months back about doing a show on hospice but never got an answer.

  8. Hi Judi,
    Hope you are having a good day today and will have a good one tomorrow for your Memorial party.
    Thinking about you lots.

  9. Hi, Herrad,

    The celebration isn't till August 20th, but I hope to have a good day today and every day! We'll be posting more about the event as the date approaches, and afterwards hope we can put a lot of the proceedings onto the blog.