Pandora’s Box

Alice Keys, M.D.

April 29, 2012

This morning I remind myself to point my eyes forward. I tend to want to re-do the past and try to make bad things “never have happened”. I know how well this doesn’t work. Some days, I wish the Pandora’s box of pills had not been opened. I want to go back in time and slam the lid closed.

I wish I had known the direction of this train and yanked the emergency brake and stopped it, back when it first began. I imagine that I could have thrown myself under the wheels to make it stop.

Then, I remind myself that martyrs are dead people. Being alive means I’m here to help design and build a new future. I can’t un-ring this bell.

My studies and recollections of history help me gain a more balanced understanding of where I am and how I got here. However, constant focus on the past impairs my ability to correct my forward direction. Focusing on where I went wrong and what’s wrong now, doesn’t give me new destinations.

In my search for direction, there’s a “quirk” in the human cognitive operating system I must remember. I was taught about this by my hypnotherapy teachers of long ago. During information processing, our big brain ignores negative modifiers such as “not” and “un”. What this means is, that when a doctor tells me “this won’t hurt”, my brain immediately goes on the hunt for “hurt”. It bypasses the negative modifier and finds “hurt”, even when this is not what I meant to say.

Imagine when you first drove a car on a twisty mountain road and looked down over the edge of a frightening cliff. You thought, “I don’t want to go over that cliff”. These thoughts tugged your hands on the wheel in the direction of the precipice and the car swerved closer to the edge.

Pointing my attention to the path I want to be on, helps keep me on it. Obviously, I need to know the cliffs are there. Not knowing about the danger is dangerous.

Even the word “free” is tricky to use in goals and plans. It seems like it should be a good word for these purposes. Except “fat-free” has me studying the label to look for the fat.

The word “free”, implies imprisonment, struggle and fights. I was taught a song in public school during the second grade that begins with the words “freedom isn’t free”. The next lines are “you have to pay the price, you have to sacrifice, for your liberty”. In my mind the word “free” is associated with unavoidable wars.

Visualize a battle and it will come. If a fight is what I want to have, this is easy to make happen. Incautious use of words can bring about wars I do not mean to have.

Whenever I catch myself focused on what I don’t want, I redirect my attention to make lists of what I do want. I make clear, specific, written goals. I read them every morning while I eat oatmeal.

“I don’t want to be fat” may be a good place to begin a search for a goal. Unless the focus is shifted to specific positive goals like “I want to be able to bend over to tie my shoes” or  “I want to comfortably walk around the block”, my powerful mind will paddle away to look for fat and find it for me.

I know pharmaceuticals are dangerous, profit-driven commercial products. I don’t want to prescribe them. But I learned from our country’s “war on drugs” that the policy of “just say ‘no’ to drugs” backfires.  Saying “no to drugs” drags our focus back to drugs every time we say it. If my goal is to “just say ‘no’ to fat” then I will always find fat around my middle to say ‘no’ to.

When I tell a colleague that I don’t want to prescribe psychiatric drugs, the conversation invariably shifts to “What about in this situation?” or “How about for a patient like that?” and “What if there’s a really, really good reason?”

How I set my goals is very, very important. The words I use matter. A lot.

If I want a war on psychiatry and psychiatric drugs, I’m certain to find one. If I want to break free of domination by behemoth multinational profiteering corporations then I’d better go straight over there and chain myself up to one.

A social worker in Portland Oregon wrote to me last week. He said that maybe someday, “over the rainbow”, we can put together a pro-education, pro-psychotherapy, pro-case management, pro-socialization, pro-creativity, community-based clinic. Wow. This is a guy that understands how the mind works in the process of goal-setting. And he has great ideas.

I’ve heard lots of great ideas since Robert Whitaker invited me to write for his “Mad in America” webzine. I love the reply section at the end of each article. I didn’t notice it before I agreed to write. I wondered, at first, if I was supposed to reply to those comments.

What the heck. I found the click button and wrote back.

Through these conversations, I discovered a thriving and diverse community of thoughtful individuals. I’ve met people from around the country and around the globe that I’m unlikely to have known otherwise. I’m impressed by the energy, the ideas, the warmth (and heat) in our conversations. Some people focus on the things we must avoid. We need these voices so we can know where the cliffs are. Many have already found and created better options for some who have been labeled as “mentally ill” and categorized as requiring a lifetime of medication.

These complex discussions include those that make us aware of the dangers and also those with a broad range of ideas for the future. They give me hope that all of us can find directions to move in for a better future. There is room at this table for everyone. All our voices together can be one voice for hope.

Hope was the spirit found in Pandora’s box after all the troubles were released upon the world. I hear a lot of hope in the conversations which happen here.  

Thanks for reading.

Alice

 

Alice Keys, M.D.

Necessary Phoenix:  Can one physician help heal the practice of medicine? After  two and a half decades of work as a psychiatrist in private practice, community clinics and inpatient units, Dr. Keys shares her personal perspectives on the devolution of medical care and the needed  resurrection.

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39 thoughts on “Pandora’s Box

  1. Alice, I worry about you. Judging by the titles of your posts, you are feeling very down. (I also understand how difficult it must be for you to do this soul-searching in this medium.)

    I’m sure you know in your rational mind that your career doesn’t have to be over. You can practice psychiatry ethically.

    As you can see, patients believe there is a large issue of guilt and responsibility for patient injury among psychiatrists, yet each individual psychiatrist has a hard time seeing how he or she made the mess and what to do about it.

    Mickey Nardo posted a beautiful apology to patients on behalf of all psychiatry here http://1boringoldman.com/index.php/2012/02/20/no-further-comment/

    He says: “I was a Silent Witness to something pretty rotten, and I didn’t take the time or put in the effort to scope it out. So I share in the shame.”

    Dr. Nardo retired from a prestigious position at Emory and quit the APA in protest before he had to go into pharmaceutical psychiatry. He’s spending his retirement taking apart studies to find out what — and who — went wrong, partly to make amends for the rest of his profession.

    If you haven’t been reading 1boringoldman.com, you might find a fellow spirit there.

    • Good morning Altostrata,
      Thanks for your concern about my well-being. Rest assured I am well. Thanks for the links. I feel very supported here.

      Really, I thought this morning’s post was about hope and working together for common goals. About avoiding fighting when other approaches can work more effectively. About the hope that can be found even when you do have a big mess of trouble. I must have missed my mark. Ah well. Another day, another post. I do hope you enjoyed the read, nonetheless.

      Thanks for reading and commenting.
      Best,
      Alice

  2. That song you learned in second grade, “Freedom isn’t Free,” was from the Up With People show. I was a part of a local and regional cast back in the late ’60s.
    _ _ _ _

    There’s a conversation in the Landmark Forum about driving a car with your eyes only on the rear view mirror… watching the past like it will help you “see” where you’re going in the now. Only when you let the past be in the past (where it belongs) can you actually make choices about the Now that’s creating your future… the possibilities you’re creating for that future.

    In the domain of psychiatry, what possibilities do you see? What can be invented Now as a new possibility? Something to live into!

    Tell us here in MIA.

    -Keith

    • Keith,
      Thanks for identifying that song. That one song from elementary school has influenced how I view the concept of “free”.

      Do you have a link for the “landmark forum”? It sounds like another venue for thoughtful folks to grow ideas.

      Are you asking for my personal ideals, wishes and dreams for providing care if I could carve out a hidden niche and work the way I would like as a psychiatrist? Are you asking where I can imagine having the most impact on changing the whole huge snarled healthcare delivery system as it is today toward something that will work? Either of these two are huge topics. Are you asking something else?

      Thanks for reading and posing such thought stimulating questions. Another writer for MIA, Bob Nikkel, is a former commisioner of mental health and addictions from Oregon. He and his wife recently started a non-profit whose focus is the design of a “new mainstream” in mental health. He and Gina both write here and would be good to have in this kind of discussion. I’m certain there are others. I’m the new kid on the block.

      Thanks again for reading and posting. Welcome to a discussion that impacts all 311 million of us in this country.

      Alice

  3. I think it’s actually helpful to consider questions from the psychiatric mainstream like: “How would you help person A if not with drugs? Person B if not with locked hospitalization? Person C if not with restraints?” I worry that the psychiatric mainstream won’t take the alternatives movement seriously enough if we can’t clearly articulate what those alternatives for people in intense crisis states would be.

    I appreciate the exploration on this website and elsewhere, not just of avoiding current psychiatric harms, but also toward better approaches for helping people in various kinds of distress and crisis.

    • Philroy,
      Here’s one:

      One treatment approach to explore is that of Dr. Loren Mosher and the “Sorteria House”.The original Sorteria House in San Jose is closed, but there are other outposts of psychosocial community care and “open dialog” treatment such as in Alaska and Lapland (Finland). Little to no antipsychotic drugs, no restraints, no hospital stay, good outcomes, reduced financial costs, reduced disability, reduced relapse of psychosis.

      This takes more forethought and planning than a pre-loaded syringe but the outcomes are so much nicer.

      I don’t remember “mainstream psychiatry” gathering around Dr. Mosher’s bandwagon when he was alive. I’m not sure how to get “mainstream psychiatry” to get serious about making alternatives a reality.

      That said, I was somewhere in the “mainstream of psychiatry” till a couple of years ago. I have met others as well who are shifting their perspectives. Perhaps we can enlist “mainstream” psychiatry to leave the familiar old channel and help design alternatives as well. There must be others out there.

      Best,
      Alice

  4. Alice,

    I do my best to keep some things simple (laregly because so much of this is so complex).

    I visualize what I would like the world to look like/be like for our two sons… (this may explain some of my passion).

    And I remember what my Scoutmaster taught us when I was a kid in the Hill Country – “Leave the campsite cleaner than the way you found it.”

    So that’s what I do.
    I visualize a better place.
    And do my part to help clean things up.

    And although I may come across as mean-spirited, deep-down I’m still that kid from the Hill Country.

    Duane

    • Duane,
      You seem passionate and helpful. I appreciate all your support and energy. I am definitely the “new kid” around here on MIA. Others, like yourself, have been collecting resources and spreading the word for a while now.

      I think I know what you mean about being from “hill country”. I grew up on a small family farm in Ohio. “You can take the girl out of the farm, but not the farm out of the girl”.

      I’m over here visualizing for a new future, too. There are days I can think bigger and days I have to keep my focus small so as not to overwhelm myself.

      We’re planting trees here in addition to the one season crops. Some will bear fruit sooner than others.

      Best,
      Alice

  5. I am hoping that you can speak, perhaps in a future post, to those of us who did go on meds a long time ago. And people who are doing at least semi-well, emough of the time- or at least, would have a lot to lose if suddenly we stopped taking our meds. For those financially independent (or on disability) this might not be an issue- just take a few months until your brain adapts. But for those of us who are trying to keep jobs or raise kids or whatever, what do we do?

    • Emily,
      You are in the driver’s seat of your life. You are the only expert on you. Get as much advise and information as you can from every source you can and then decide how you want to do things. Watch the life timing. I’m sorry I can’t give you specific advice for your personal situation.

      If you(or anyone) wants to taper down or off medicines, it would be best to do this in the context of a relationship with someone who knows you well that you trust. It’s good to have a support system in place. You and this treatment provider would need to make a clear list of symptoms and management interventions for them and then play it slowly. Write things down in a journal because memory is notorious for forgetting. Being in a hurry can trip things up. There are medicines that give a person “symptoms” when stopped that they never would have had otherwise. Don’t confuse these with “symptoms” of your illness if they are new and different.

      If you decide to stay on medicines, this is a personal choice as well. Get information and advice. Work with people you trust that know you well. Don’t let someone else’s agenda decide for you.

      Neither path is risk-free. Everything is not known.

      If I can come up with better, I’ll write a post.

      Thanks for your questions.
      Best always,
      Alice

      • Alice, there are few resources available in real life for people who want or need to very gradually taper off their medications.

        There are maybe a dozen or so patient-run Web sites that attempt to support people through this process (mine is one of them: SurvivingAntidepressants.org).

        The advice to find a knowledgeable treatment provider is fine in theory — and always spouted when patients bring up the question of getting off their medications — BUT THERE ARE VIRTUALLY NO TREATMENT PROVIDERS OUT THERE who understand individualized, gradual tapering to minimize withdrawal symptoms, as Emily needs.

        It’s a disgrace to medicine that peer Web sites are filling this particular vacuum in patient care.

        Some people can tolerate reductions of only a fraction of a milligram per month. With very, very few exceptions (of which I would love to hear), treatment providers have no idea how sensitive our nervous systems can be in withdrawal. When withdrawal symptoms appear, most call it relapse and pour on the drugs again.

        Emily brought up a very real problem. Please consider the real-world situation: Treatment providers who can help sensitive patients taper safely off medications are nearly impossible to find.

        • Altostrata,
          You are exactly right. I know there aren’t many. There aren’t many psychiatrists available in Portland to do anything, medicines or not. I still get calls and my private practice has been closed for years. Read my reply to Katie today. I think I addressed how the situation panned out for me with an office practice.

          When someone says they’re taking medicines, I assume that someone is prescribing them. This is the first stop when looking for a taper off. Bring friend and family to the discussion. Have questions written out.

          I tip toe a bit here in the reply area. I don’t want to accidently be seen as a doctor who is providing individual medical treatment advice to someone I’ve never met. There are so many ways that could go really wrong.

          Yes. You’re right. The wrong assumption is sometimes made when “discontinuation” or “withdrawel” symptoms occur that this means you “need” to keep taking the pills or that “your illness” is back. It’s good to have a clear list of symptoms before starting a taper. This requires self knowledge and awareness.

          There are not enough resources yet to do the jobs that need to be done.

          Every bit helps.

          Alice

          • Alice, I feel somehow we’re talking past each other.

            I’m not asking you what I should do about tapering. I’m a peer expert on withdrawal.

            You say: “When someone says they’re taking medicines, I assume that someone is prescribing them. This is the first stop when looking for a taper off. Bring friend and family to the discussion. Have questions written out.”

            Your first error is the presumption that any doctor is going to have anything constructive to add to a patient-led discussion about going off psychiatric drugs.

            Your second error is the assumption that the patient herself knows anything about tapering!!!

            Patients trust their doctors to know what to do. Doctors are giving their patients bad information about tapering. This is nearly universal.

            The standard legally correct advice “consult your caregiver” is nonsensical in this environment. There are no knowledgeable caregivers to consult.

            The world really, really needs doctors who will help people get off psychiatric medications. Anyone with prescribing privileges who is concerned about the overprescription of psych drugs can learn how to do this.

            It is, of course, your own choice whether you personally want to take on this responsibility.

            I just want to make it crystal clear that “consult your caregiver” really does not make any sense in this context.

          • Altostrata,
            Yup. We’re talking past each other. I suggest talking to the doctor who is prescribing the medicines as a FIRST move. If you have a relationship with a doctor, even if she doesn’t end up doing what you want, she needs to know what you’re doing.

            My advise as a FIRST step stands. Always START with the person you have a treatment relationship with. Then, if you have to cast a wider net to do what you need to do, keep her in the loop. Or change doctors.

            Sorry for the misunderstandings.

            Best,
            Alice

  6. In his book “Just like someone without mental illness only more so” Mark Vonnegut, a doctor himself, writes: “There is something very pure-and easy to screw up-about trying to do the right thing without doing harm” and I think that is something everyone should keep in mind. In my experience coming off meds is something very difficult if you don’t know what you are doing. One needs 24 hour help and support. It certainly can’t be done over night and even when off the medication it takes months, even years for your hormones to rebalance not to mention all the psychological trauma of being sectioned and labelled and forcibly drugged

    • Good morning Alix,
      Thanks for your reminders. Help and support are a critical ingredients in the process of moving toward a life with less or no psychiatric medicines. This can be a longer process than anyone would like. The repercussions of both having taken medicines and also of stopping them cannnot be forseen for an individual. They must be watched for. Make a clear plan. Take notes as you go. Moving too fast can backfire. Everyone’s process will be different.

      Having made this cautionary statement, I have also known people who lowered and stopped medicines and felt better than they had in years. I met one young woman who was taking six different psychiatic medicines. We weaned down to just one pill a day over a year. She had not been on them long. She had an incredibly good support system. Years later, I heard back from her that she had even stopped the last one. She had made good structural changes in her life that made this possible and maintained her fine support network.

      Thanks for reading and posting here.
      Alice

      • Dr. Keys,

        You don’t need insurance re-imbursement.

        A challenge:

        Build a non-profit organization.
        Ask for grant money – private and public (see money) to get started.

        Build a strong board of directors – the very best you can find.

        Hire the best doctors, nurses, out there.

        Get the word out – far and wide.
        This site would begin to carry the message, that FINALLY there is an organization dedicated to helping people get off psychiatric drugs – slowly and safely.

        You will have more patients than you can possibly imagine, some of whom will be from wealthy families who are more than willing to donate money; others will have friends/family members who are attorney, CPAs, marketing professionals. Many will be delighted to volunteer.

        Build it.
        “Build it and they will come.”

        Duane

      • typo – seed money

        The Moody Foundation in Galveston would likely be interested – they help fund research of Hyperbaric Oxygen Therapy (for TBI/PTSD).

        There are many other private philanthropists, groups, organizations; as well as state/federal angencies.

        The money is out there.
        Think out of the box.
        Put it on paper.
        And ask for it.

        Duane

      • Alice,

        Yes, we are taking the “first steps.”
        Re: grant writing?

        I don’t have much experience in that area, other than some research for grant money; most of mine is in program implementation and management (non-profit); case management; counseling. But I also have experience in both marketing and sales – lots of presentations along the way; good closing skills.

        Be well,

        Duane

    • So very true. Tapering someone off multiple medications is simple in theory but complex in real life, as you run into all kinds of twists and turns for a particular individual.

      It really needs a doctor’s attention. In the meantime, I guess we have the Internet.

  7. “Skilled psychotropic medication-removal experts” — !!!!!

    That would be an excellent black-comedy TV series. Kind of like crime-scene cleanup.

    Patient comes in stupefied and twitching from 5 or 6 concurrent psychiatric medications….

      • I am sorry that I was unclear. I work in a community mental health center. My only point is that I do not believe there is anything inherent to our current system that precludes working with people to taper medications. We do it all the time. It only requires that one believes that it is a worthwhile endeavor.

        • I do not believe this is a Vermont issue. I know that what you describe is ture for many psychaitrists but I know I am not alone because I am in contact with like-minded psychiatrists. I worte a blog about “med checks”; there is nothing in the billing system that prevents me from reducing medications during an office visit.
          It comes down to a matter of how one interprets the available literature via the risks and benfits of various drugs. It also depends on the risks that the patient and physician are willing to take.
          The literature is so cpmplex for so many reasons that I know you understand and this makes it hard to know which literature to believe.

        • Sandy said: “It only requires that one believes that it is a worthwhile endeavor.”

          Yes, I believe this is clearly so. I know doctors who do this. Mickey Nardo, David Allen, Steve Balt all mention this on their blogs.

          Now, how to convince doctors that this is a worthwhile endeavor? Doctors, rather than patients, are most likely to convince other doctors. My belief is that doctors need to talk to doctors and model the behavior.

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