OMGThat'sWhatTheySaid! -- Language

The following post contains material that could be considered uppity, outlaw, provocative, offensive and paranoid. 


This month's OMGThat'sWhatTheySaid Award considers the nature of the vocabulary that we all use for mental illness, in particular, the language that norms the relationship between those who receive a diagnosis and those who make it.

Once upon a time, I wrote a senior thesis for Reed College on this topic.  I was a religion major, and it was 1975, when the Episcopal Church was considering the ordination of women.  My topic was what priests are called.  My thesis was that the language we use establishes the normative relationship between priest and parishioner.  I am discouraged thirty-four years later, that new, freshly graduated priests in Iowa still permit and even encourage little old ladies to call these twenty-somethings "Father."  Oh well.

In the mental health field, this kind of paternalism is out of favor, perhaps the influence of so many women in the field.  But the language has not escaped from reinforcing the power relationship, one up and one down.

I am taking a Peer to Peer (P2P) course, sponsored by NAMI, where we scratch the surface of this topic.  The course text notes that every stigmatized group that has resisted oppression has done so by claiming the language, deciding for themselves what they will be called.  Invariably, these claims are disputed, whether ladies/women, Negroes/blacks/African Americans, homosexuals/gay men and lesbians.  Sometimes the self-chosen word is turned into a form of ridicule.  Women became "women's libbers."  "Gay" is a high school put down.

Typically, those in power deny the power of their language, or do not take responsibility for it.  They cite ancient derivations and precedents, and accuse those uppity people of being over-sensitive, "It's just a word."  People with mental illness can expect no less, or even more.  Those who have power to diagnose us define us to a public that is nervous about us anyway.  They have power to mess with our medications, our disability payments, even our liberty.  For example, that sentence itself could be diagnosed as paranoia.  Has my depression progressed into psychotic features?  Consider, many who are involuntarily committed receive their sentence for something they said.

However, the mentally ill are everywhere, to appropriate another group's phrase.  We include among our ranks those who have been through the previous struggles.  For me, it was when my employer wanted to know how to phrase the announcement of my disability leave (originally called a "retirement") that I realized, I know the map.  So do a number of my peers.

So let's dive into it.  Doctor/patient -- See, that could be power neutral, but for the deep layers and long tradition of one up/one down behaviors and the language that supports the existing relationship.  Sticking with language, one gives doctor's orders; the other either complies or is called noncompliant.  When they do clinical trials of medications, they measure the rate of noncompliance.  Who came up with that?  Not the person with the diagnosis, who does not take the medication as directed if the reasons are not explained well enough, if the medication is not effective or is too expensive, or if the side effects are intolerable. For all the latter day talk of how doctor and patient are partners in this relationship, if the patient had the power to name his/her own experience, the word would not be noncompliant.  It would be dissatisfied.

Moving on to therapist/client.  Client isn't so bad, and this one might stick around, if therapists were called by the parallel term, mental health consultants.  That would suggest that the client has certain expectations.  Imagine an intake interview in which the expectations of both parties were discussed.  The consultant has policies about cancellation of appointments and payment of co-pays.  Would it not be balanced, therapeutic even, for the client to name his/her expectations, for respect, for discussion of the diagnosis, for disclosure of what the consultant reports to the insurance company and the consultant's peer review or supervision, how confidentiality is handled in such settings, for the consultant's knowledge of side effects, so that problems with medication could be identified as such, and not misinterpreted?  How about a regular review of whether each other's expectations are being met? What expectations would you have?

Here is a big one for me: provider/consumer.  I suspect the intent of this couplet was to soften stigma and normalize the experience of therapy.  But it misses the mark.  No consumer invented the word.  It is the word that degrades the entire population.  We are a consumer society, defined by our usefulness to business.  It has become our duty to shop when terrorists threaten shopping malls, spend when business is hurting, and thereby relieve the anxieties of stock holders.  They say that the economy is improving when the owners of the economy are making money, not when there are fewer people who live in the streets or beg at street corners, not when all receive adequate health care that they can afford, not when each of us can make a meaningful contribution to the quality of life on the planet.

In the language of mental health providers, our health has become a commodity.  Mental health providers deliver mental health services, as mother and father birds drop food into the open mouths of their chicks, the consumers.

Well, there is no turning back the forces of the economy in health care until the whole system collapses.  Its voracious appetite consumes us all.  So how do we who have a mental illness claim power within the economic paradigm?  What language do we use?

This examination of language is a collaborative process which NAMI has begun, inviting peers to participate.  Already, NAMI reshapes the language, when it calls people who have schizophrenia, people who have major depression, people who have bipolar, people who have obsessive compulsive disorder, people who have been labeled with a borderline personality disorder, all of us peers.  Peers consult with one another, learn from and support one another, and come together to name and meet their own needs.  There is power in numbers, power in cohesion.  If we can recognize that there is more that unites us (our experience) than what divides us (our differential diagnoses), then together we can act.

And how to name the relationship with psychiatrists?  I propose that we are "customers."  We purchase the services and pay the salaries of psychiatrists/sales reps.  They get their commissions from the pharmaceutical companies.  Their commissions are not as big as they used to be, no Hawaiian vacations for those who prescribe/sell great quantities, unless they become the middle men, the doctors who sell the product to other doctors as speakers at conferences.  Although ethical issues have been raised about these practices, pharmaceutical companies still supply commissions in the form of research grants and pay for almost all of psychiatrists' continuing education.  Really.  We pay the salaries.  They pay the commissions.

Now let me make my own disclosure .  AstraZeneka, the producers of Seroquel, used to treat schizophrenia and bipolar, is the sponsor and funding source for Peer to Peer.  At each meeting we sign in, so that the program can report back to AstraZeneka.  If attendance falls below ten, then AstraZeneka pulls the funding.  I drive sixty miles each Thursday evening to attend this class in the next county, because NAMI hasn't gathered a full class size in my county.  Last week we did an exercise.  Each person who could state something positive about their medication finished this statement, "Without my medication, I would..."  The exercise had its desired effect, as I gave thanks for my medication.  So NAMI is part of the sales force as well.  And I receive these services gratis.

Back to psychiatrists -- If we are customers, then efforts at compliance become concerns about customer satisfaction.  Now the power balance begins to shift.

Do you have other words to suggest?  Feedback?

 Permission is granted to copy this document 

under the terms of the GNU Free Documentation License

Nonsense and the Anterior Cingulate Cortex

John McNamany put the thought into my head, the New York Times tickled my fancy and a blog new to me gave me the illustration.

Finally, it's Anterior Cingulate Cortex Week!  This lovely portion of the brain is found in the limbic system, located just above the center, about where Iowa would be, if you flipped the image so that it faced right, as I did here.  Like a true Midwesterner, the ACC modulates emotional response.  A hard-working manager, the ACC handles motivation to solve problems and anticipation of tasks and rewards.  It also monitors for conflict, things that don't make sense.  The brain is unhappy when it cannot detect the pattern.  Confronted with anomaly, the ACC goes to work.

"Researchers have long known that people cling to personal biases when confronted with death... In a series of new papers, Dr. Travis Proulx of University of California Santa Barbara and Steven J. Heine, a professor of psychology at the University of British Columbia, argue that these findings are variations on the same process: maintaining meaning, or coherence. The brain evolved to predict, and it does so by identifying patterns.  When those patterns break down — as when a hiker stumbles across an easy chair sitting deep in the woods, as if dropped from the sky — the brain gropes for something, anything that makes sense. It may retreat to a familiar ritual, like checking equipment. But it may also turn its attention outward, the researchers argue, and notice, say, a pattern in animal tracks that was previously hidden. The urge to find a coherent pattern makes it more likely that the brain will find one." [Benedict Carey, New York Times, October 5, 2009] 

To test whether confronting the absurd leads to pattern-searching behavior, they had twenty college students read Kafka, "The Country Doctor," a story that is urgent, vivid and nonsensical.  Does anybody who is not in college ever read Kafka?  Anyway, after reading the story, they were given a task, to study strings of letters that did not form words.  They were then shown a longer list, and asked to find the strings they had seen before.  The letters did have patterns, very subtle patterns.  And the students who had read Kafka did better at this task than another twenty who had not been exposed to the absurd, 30% better.  With a Kafka-stimulated ACC, they were primed to find the patterns.

I wonder if that explains the college student's propensity to read Kafka, in the first place.  Not to mention all those posters by Salvador Dali on dorm room walls.  The college student is at a crossroads, and has to puzzle through the animal tracks of his/her life, to discern the pattern, the call, the next direction.  These representations of the absurd stimulate the part of the brain needed at this developmental moment, just as caffeine stimulates the system before the exam.

I graduated from college at loose ends, with the Episcopal Church still discerning the patterns that would allow for the ordination of women.  That was a few years off, and I wasn't ready to commit to a vocation that might not be received.  But I didn't read Kafka.  Instead, I decided to read everything that Kurt Vonnegut had written up to that point, a modern day Kafka, Kafka-lite, if you will.  Today, as I am filling out disability applications, I am again at a crossroads, and again, instinctively, I am drawn to Vonnegut, whose body of work has grown since 1975.  Evidently I am stimulating my ACC and boosting my pattern/meaning/coherence finding abilities, priming myself to discern my next direction.

Oh boy, I found another fMRI experiment!  There is a study in the Journal of Pain (what a title!) that discovered, when people were prompted by pain-related words to remember painful autobiographical episodes, the fMRI machines showed that it was -- you guessed it?! -- the anterior cingulate cortex that lit up.

"This person loved me; this same person abused me" -- two memories in conflict.  Put them together, they cause pain. They call it dialectical thinking if you can hold two seemingly contradictory ideas in the same head at the same time.  But dialectical thinking is a highly developed skill.  Before anybody ever suggested to me that I could employ it to reduce my pain, I spent (and still do spend) enormous amounts of energy trying to make sense of events that were absurd.

Some of us had Kafka-esque childhoods.  I wonder, does the ACC becomes quiet if we engage in dialectical thinking?  I wonder. does it can blow a fuse, if we don't?

If you are searching for Christmas gift ideas for the Prozac Monologues blogger, an fMRI machine would certainly be well received. 

image of brain from NIMH 

artwork found at Glocal Christianity

Weighing the Risks and Benefits - Will My Life Be Better?

"You have to weigh the risks and benefits."  That is what the doctor says.  It's your body, your decision, your responsibility.

But how do you weigh them?  There is that list of side effects.  They sound pretty scary, but the doctor assures you they are usually manageable.  Then there is the potential benefit of feeling better.  Well, that would be the gold ring, now wouldn't it?  Being able to get back to your family, your job, your life?

It's not a hard sell.  Reach out your hand and the pharmaceutical company will place in it that most precious of all commodities, hope.

Perverse little smarty pants that I am, after my hopes had been dashed six times, I started to read.  For four years I read journal articles about clinical studies.  The basic format begins with a measurement of depressive symptoms, usually the Hamilton Rating Scale for Depression, HAMD, depressed mood, suicidal ideation, sleeplessness, loss of appetite, etc.  You get points for severity.  Unlike your junior high math exam, the higher the score, the worse off you are.  In fact, if you ace this test, they will administer electric shocks to your brain (yes, I know, you will be unconscious at the time and won't feel a thing) until you forget how bad you feel and get a lower score.

So there are two groups, as alike as possible, Group A averages a HAMD score of 21.6, Group B's average is 22.1.  That's the mid range for moderately depressed, and the typical test subject score.  They don't include you in medical trials if you keep getting a high score, because now it's the medication that is being tested, and they want an audience that is easier to please.  Group A gets the medication being tried, Group B gets the placebo.  After 8 weeks, Group A's HAMD score is 8.2, Group B's score is 10.9, both in the mildly depressed range, but the difference is "statistically significant."  [That would depend on how big the sample is, and I am not doing the math.]  More people in Group A than Group B reached remission, a HAMD score of 6 or less.  A certain number dropped out because of side effects, so they don't count.  And there we have it.  The medication improves depressive symptoms by a statistically significant amount and is well tolerated, and you should get yours today.

But you know what?  That study with all its statistics did not answer your question.  Will you feel better?  Will you get your life back?  It told you what the odds are that your depressive symptoms would be reduced.  But that is not the same thing.  Not at all.

For example,the truck driver who is sad, not sleeping well, has no appetite, worries a lot and feels guilty is given Zoloft by his family practitioner.  Now he's eating better and is learning to put past sins behind him.  But he is too dizzy to drive, gets in fights with his friends and can no longer satisfy his wife, or even himself in bed.  So he decides to quit his meds.  The doctor is focused on his HAMD score and is very concerned, convinces him to try another med, then another.  But each time he gets the same side effects, and meanwhile has lost his job.

The truck driver has weighed the risks and benefits, asking is my life better? No, it isn't.  Let's hope his doctor knows that Cognitive Behavioral Therapy is often as effective as antidepressants for mild and moderately depressed people.  Ditto aerobic exercise, which could help his lose those extra pounds, improve how he feels about himself, and change the nature of what happens when they turn out the lights.

It turns out there are lots of psychological tests.  Many try to do what the HAMD does, and their inventors think that their tests do it better -- measure depressive symptoms.  But there is also a test that asks the real question: Are the lives of the people who take this medication better?  The Sheehan Disability Scale is a three question test, answered by the patient.  On a scale of 1-10, how much have the symptoms disrupted your work/school, your social life, your family/home responsibilities this past week?  It's simple.  It's easy.  It's what the people who are taking the meds want to know, will my life be better.  The people doing the research are focused on symptoms, not on the patient's life.  So that is how I read journal articles for four years and had never heard of the Sheehan Disability Scale (SDS).

For some reason, the clinical trials for Abilify decided to ask the patient's question, using the SDS.  Actually, they used seven different tests.  When the journal articles came out, they reported only one, the Montgomery-Asberg Depression Rating Scale (MADRS), a substitute for HAMD.  My September 4 post, OMG!! That's What They Said! Significant, reported its not particularly impressive, but FDA passable,  "statistically significant reduction in depressive symptoms."  The other test results disappeared.

But somebody noticed, and called them on it.  That is when I learned that the SDS even existed.  Why would they go to all the trouble of doing seven different tests, and then publish the results of only one?  Turns out that while Abilify.com says that "Clinical studies of adults with depression showed that adding ABILIFY to an antidepressant helped to significantly improve depressive symptoms compared to adults treated with an antidepressant alone," as far as the people who actually swallowed the stuff were concerned, it was a wash.  When you weigh symptoms and side effects, they reported that there was no improvement in their work/school life, a little improvement in family life.  But overall, it was a wash.

What was the author's response?  "Robert Berman from Bristol-Myers Squibb wrote... "this may be due to the lower sensitivity" of the measure."  I got that from "Abilify, Depression and the Memory Hole" at clinpsyc.blogspot.com.  Robert Berman, chief author of the research report, is not only an employee of Bristol-Myers Squibb, his compensation also includes stock options -- a little side note on how medical research is conducted in a for-profit health care system.

Okay, so the Sheehan Disability Scale is not sensitive enough to pick up what were pretty small decreases in depressive symptoms anyway.  That isn't its purpose.  What it will do is weigh your risks and benefits. Will Abilify improve my life, at work, at home, at play?  Nope.  Not if you are taking it for depression.  It won't.

What Prozac Monologues wants to know is what the Sheehan Disability Scale would tell me about Lamictal, the medication I have just added to my antidepressant instead of Abilify.  But as far as I know, nobody asked.

photo by Hans Anderson, This file is licensed under the Creative Commons Attribution ShareAlike 3.0

Taking a Break

Into the life of every over-medicated lab rat, a little downtime must fall.  Prozac Monologues is taking a bit of a break, with apologies to regular readers.  I hope to tinker with the sidebars to add some resources, while not being able to maintain my own writing standards.

Meanwhile, let me once more recommend Knowledge is Necessity for information about the Pharma/Medico/Therapeutic Industrial Complex, and occasional good clean fun. 

Photo credit: Copyleft Attitude http://artlibre.org/licence/lal/en/

To our Families

To that end, I am going to live with this disease the way Don lived with his. Openly -- I have a mental illness. Actively -- I will answer ignorance with education. Politically-- I will meet discrimination with change. And in community -- I will support and be supported by others who share this illness with me, so that we can survive it together.

I did get to say those words on Sunday night.  

This morning I made a list of all the things you would be reading about at prozacmonologues if only I were able to read more than three paragraphs at a time.  I am tempted to feel badly, especially for all my older readers, who come here expecting to find out about the relationship between nonsense and the anterior cingulate cortex, or Wyeth's research techniques in its effort to get Abilify approved for augmentation in the treatment of major depressive disorder, or "Akathisia: Stop it or Die," or my discourse on the concept of a failed suicide attempt. 

But down, damn ant! [automatic negative thought] You, dear reader, are not reading about all those things because sedation and supervision in lieu of hospitalization is working just fine.  ["Plan?  What's a plan?  Do I have to stand up?"] So I was able to speak my piece on Sunday night, the candlelight vigil that began Mental Illness Awareness Week.

Everybody thinks I am a wonderful speaker, and they told me so and the local paper quoted me, and that was very nice.  But somebody also needs to say that it was possible, not only because God was willing, but because my spouse has turned her life upside down to take care of me right now.  She is negotiating with her workplace, she is working from home, she is attending Family to Family meetings, she represents my interests, she fights my battles, she keeps my meds, she does the dishes, she walks the dog.  She is exhausted.  And she comes home from Family to Family meetings and tells me that there are other families, too.

Mental illness is a family disease.  And when I say that we survive it together, well, family is a very big word.  Some of us become family, because we choose to be.  I am so grateful for four friends who attended that sexuality talk that didn't turn out to be quite what we thought it would be, but instead has become the germ for the Loony Review, by the Not Ready for Discharge Players!  [A potential addition to next year's program?]  We are family because we choose to be, because to not choose to be wouldn't be insane, it would simply be stupid.

But some of us are family because that's how we started out, when we didn't know what it would cost.  The members who do not have the diagnosis, boy, do they still get to have the disease!  And pay the cost.

Some of us who have the diagnosis don't have the capacity or the wit to say it.  I do.  So today I will say what they would if they could.  Thank you.  We owe you our lives. We wish it didn't have to cost you so much.  Sometimes we lie to you, or are mean to you, or even desert you.  And you aren't always right.  And sometimes you DO make it worse.  But mostly we know that we owe you our lives.  Not all of us survive.  But those of us who do, we survive it together.  Thank you.

Thank you, Helen. 

photos in public domain 

Hello, my name is Willa, and I have a mental illness

I try to post more often.  The last week has been spent in a story so stereotypical that those readers who have or have tried to get disability benefits will find it banal.  And until it has an ending, I can't tell it in Prozac Monologue mode: reflections and research on the mind, the brain, depression and society. I am not reflecting yet.
So I tempt fate with the following.  Si Dios quiere, God willing -- I will say the following at the opening of Mental Illness Awareness Week Sunday, October 4, 6:30 PM, at the Anne Cleary Walkway, University of Iowa Campus, Iowa City, Iowa, a candlelight vigil to remember those who have died from mental illness and to support those who hope to survive it.

Hello, my name is Willa and I have a mental illness.

Hello, I am the Reverend Willa Marie Goodfellow, an ordained minister, an Episcopal priest who has served congregations, campus ministries, and diocesan staff in Iowa for 27 years. And I have a mental illness.

I have major depressive disorder. The mortality rate of breast cancer is 23%. The mortality rate of congestive heart failure is 50%. My disease has a mortality rate of 15%. Of course, if you’re dead, your mortality rate is 100%. If you’re alive, 100% is your survival rate.

There are factors that increase my particular risk of death, how long I have had this disease, the number of episodes, the severity, the anxiety features.

There are factors that decrease my risk. Having strong relationships within a truth-telling community through my church is one of them. A couple weeks ago I returned to a congregation I served in the past, and told them that I am going on disability because my depression has not responded to medication. I knew what would happen. I knew there would be tears. I knew that at the back of the church, while shaking hands, somebody would tell me that he has a mental illness, too. A woman told me that it took thirty-five years for her husband to find a med that finally seems to be working. At coffee hour, somebody else told me about his mother’s antidepressants. 

We are not alone. When I feel crazy because I cannot see this disease, I cannot show you the broken bone, I still know that I am not the only one. I can call on friends who know exactly what this is.

Once I did a funeral for a recovering addict. Well, it was one part funeral, three parts Narcotics Anonymous meeting. After I welcomed everybody, “Hello, my name is Willa and I am a sinner,” and said some prayers, then people told their stories. I will never forget what the convener of the NA group said, “We are celebrating tonight. We won this one. Don died clean and sober.” And ever after I have hoped that somebody would stand up at my funeral and say, “We won this one. Willa died of... natural causes.”

To that end, I am going to live with this disease the way Don lived with his. Openly -- I have a mental illness. Actively -- I will answer ignorance with education. Politically-- I will meet discrimination with change. And in community -- I will support and be supported by others who share this illness with me, so that we can survive it together.

photo by Nevit Dilmen,  Permission granted to copy under the terms of the GNU Free Documentation License

Loss

John McManamy has been on a theological kick.  So I thought I'd take a turn, it being my profession anyway.

The relationship between GoD and DoG is one of those enduring theological themes.  Here is one contribution to the discussion:



This dog reminds me a bit of my own, named Mazie -- Amazing Grace.  Except there are too many stars in the lower right corner of the constellation, a leg that she lost a long time ago.  Move those stars up to form her crown chakra.  For twelve of her thirteen years, people have watched her run and said, "That's Amazing!" -- the inspiration for her name.

Mazie is a therapy dog.  Not officially, she never received the training.  Now she has renal failure and it's too late.  But everywhere she goes, she finds the person who needs her.  When I took her to visit the shelter for victims of the Iowa floods in '08, she stopped to visit with each one.  After an hour, I was depressed and weary -- the start of my latest relapse.  I thought it was time to go.  But no, she pulled on the leash and told me she hadn't talked with that man who was isolating, sitting by himself under that tree.  And she had to hang around until the Red Cross worker got off shift, to give her some of her grace, too.

People have to ponder a three-legged dog.  After a few years, I stopped making smart remarks to the same question I heard over and over.  I came to realize that through her, people consider their own experiences of loss, and the consequences of loss, and the life she leads without even noticing her loss.

How did she come to be a therapy dog?  We don't know the before story.  We only know the after, the kindness of a farmer who went out of his way for an injured stray, a no-kill shelter that is very picky and does home studies of the people who want to adopt, a vet and staff who treat her as a queen, the strangers who flock to her and, I believe, bring their own need for gentleness to the gentleness with which they approach her.  And she responds in kind.

Will she get her leg back in heaven?  I don't think so.  On earth, the only handicap it causes is that she can't pivot to the right at a full run without falling down.  I think her only wish is that in heaven she will lose the leash, so she can do what she loves to do, to run like the wind in three quarter time.

I knew somebody who was born with a foreshortened arm.  It ended at the elbow, with a stump of a hand.  She always objected when some religious person reassured her that she would be whole in heaven.  She said she was already whole.  And she was.

What does it mean for those of us with mental illness to be whole in heaven?  All of the life experience that makes us who we are includes the experience of mental illness.  Will we lose that?  Who then will we be?

All of the loss in this world -- a friend is reading a midrash of Exodus.  [In Midrash, the rabbis explore the meaning of Scripture through story-telling, expanding and deepening the levels of the text.]  One interpretation of Moses at the burning bush is that he initially refused the call to go free the Israelite slaves in Egypt, because -- what about the ones who were already dead and buried in the walls of the pyramids that they died while building?  Who would let them go?

Will God have an answer to your question?  I don't know that I want an answer.  I want it all, us all to be gathered up, none of it and none of us to be lost.

A psychiatrist tried to reassure me once about Electro-Convulsive Therapy, ECT, saying that usually the only memory loss was of the events immediately preceding the treatment.  And usually people are so unhappy before treatment that they are glad to lose those memories.

It was not a convincing argument.  I don't want to forget.  I don't want to lose any of it.  It is part of me, even the pain.  I guess I want for it to mean something.  I want to be able to ask God to answer for it -- like the Holocaust survivor who insisted that he be buried in his Auschwitz uniform instead of the traditional Jewish winding sheet.  He wanted to stand before the throne of judgment wearing the evidence that would itself say, who is judging whom?

Maybe what I really want, for Mazie, for those lost in the walls of the pyramids, and in the ashes, and for those who are in such pain that they want to lose their minds, for all of us, is to be found.