Sunday, March 10, 2013

The Language of Hope

The Language of Hope
Mike Barnes

“Having hope,” writes Daniel Goleman in his book Emotional Intelligence, “ means that one will not give in to overwhelming anxiety, a defeatist attitude, or depression in the face of difficult challenges or setbacks.”  Hope is “more than the sunny view that everything will turn out all right”; it is “believing you have the will and the way to accomplish your goals.”[1] 
            Goleman’s definition came to mind recently when I was thinking about what hope might mean, and how it might be expressed, in the context of mental health care.  I had just written an essay called “If Not, Why Not?:  How Psychiatrists and Patients Talk to Each Other.”[2]  I sent the essay to four writers I had quoted in it, and received a generous response from one of them that ended by asking if I had any thoughts on how language is used “to instill hope.”
            I did.  In fact, I thought I had already expressed them in “If Not, Why Not?,” since the essay’s examples of how a psychiatrist’s language can enlist the patient as a colleague in the management of his or her mental illness are, to my mind, models of instilling hope.
            Confident self-management, validated by another.  This is, to return to Goleman, “believing you have the will and the way to accomplish your goals.”
            Put another way, hope means knowing three interrelated things about yourself:  that you have the desire to meet a challenge, that you possess the strength and energy to do so, and that you have now and/or are in the process of acquiring the tools you need.  The size of the challenge is not the critical element; it is the consciousness of being able to marshal resources to meet the challenge (without necessarily prevailing over it) that constitutes hope.  To feel yourself up to a challenge is to be hopeful.
            But my reader had a point:  in “If Not, Why Not?” I didn’t explore directly how the language used in mental health care can nourish such hope.  I want to try to do so now.
            Though Emily Dickinson can get away beautifully with calling it “the thing with feathers,” hope is actually a complex state of mind—views of the future compounded of views of the present and the past—which is sustained by different kinds of language at different times. 
            Hope doesn’t speak with just one voice.  No mental state does, but hope may be the most rhetorically artful and adaptable of them all.  It has to be.  It has the daunting task of offering plausible assurance to a continually shifting array of temperaments, moods, and circumstances.  To one in a dark pit, shouting frantically for help, hope has got to shine a light and bellow with absolute authority:  Hang on!  Help and a rope are on their way!  We’ll get you out!   Nuance has no place.  Neither, initially, does fact.  Whether help and a rope are actually obtainable does not determine the rescuer’s first words.  She needs first to lay a plank across the chasm between despair and possibility.  But note that, even here, in extremity, the rescuer alludes at least faintly to the resources required on the trapped one’s part.  Hang on!  Meaning:  your part is to not give up, to endure your plight a smidgen longer; and I know you have the strength to do this.  Even here, at the most passive stage of being helped, a vote of confidence is cast.
            Move up one rung from this state of abjection—to a person lost in a wilderness, say, edging toward panic—and the onus on the part she has to play in her own deliverance moves up one rung too.  In such a case it may suffice for the hope-bringer to offer means and a start:  Here is a map.  I’ll take you as far as the path.  Then follow the route marked until you get to the main road.  From there on the way is clear.    
            Many possible scenarios later, we arrive at the periodic despondency of one who is a kind of experienced ranger, a tough forest-dweller who has survived all kinds of accidents and near-death scrapes but who still sometimes doubts her chances to prevail against the odds and elements.  At this level of competence, it may be enough to remind the ranger of her history of survival, her backpack stocked with maps, provisions and tools, and to suggest a couple of additional strategies for the particular trek at hand.  Hope, at this stage, mainly means holding up a mirror to the ranger’s own competence.  This is you.  Who else would you want as your guide?
            But if hope is the quintessential artist of the moment, its voice the ultimate shapeshifter of solace, is there any point in discussing the particular forms it takes in the contexts of mental health?
            I think there is.  Because I think much of the language of hope that mental health care providers and their clients can learn to use falls within three large, interrelated categories.  As I did in “If Not, Why Not?,” I’ll draw most of my examples from my sessions with Dr. Lindsey George, the psychiatrist I have been working with for the past eight years.         

Separating Self and Sickness

Sounds like a good guy.  Where is he?
            He’s sitting right in front of me.  That’s you.  You before your illness.  And you now when your illness isn’t in charge.
            Taking my history in our first meeting, Lindsey brought about a revelation by asking, only a few minutes in, “What were you like before you went into hospital?  In your adolescence and mid-teens, say.”
            The question startled me.  I tended—I still tend—to avoid thinking about my early years.  Memories of them are blurry and attenuated, blank stretches between certain vivid snippets, and their contrast with what came after is painful.  My eighteen-month-long hospitalization, and the downward-spiralling five years preceding it, have long felt like a cliff on one side of a canyon, after, with before stretching hazily and unreachably on the other side.
            To my surprise, though, as I stared into that space, through the nearer space of Lindsey’s office, memories of a boy and young teen came to me.  He seemed half-mythical, with only a tenuous connection to me, but I could see him in certain typical actions and scenes, and list his qualities easily enough.  Intelligent, hardworking: at or near the top of every class.  Exuberant, boisterous—exploring forests and half-built houses, organizing all-day road hockey and touch-football games, playing high-speed pop songs—“Pinball Wizard,” “It’s Only Rock ’n Roll”—on the piano.  Gregarious; quick to make friends.  A joker, fond of puns and pranks.  And a tireless inventor of games, songs, stories; often goofily whimsical, but also, and increasingly, delicate and artistic:  poems, collages of found objects, imaginary maps and lists of their inhabitants....
            I stopped.  It seemed too painful to go on, and unreal as well, conjuring this bygone phantom.  That’s when we had the exchange quoted above, beginning with my wistful question:
            Sounds like a good guy.  Where is he?
            He’s sitting right in front of me.  That’s you.  You before your illness.  And you now when your illness isn’t in charge.
            I didn’t believe it.  I couldn’t.  But neither did I, or could I, discount it entirely.  Something—some chord of recognition—twanged inside me.  And wasn’t it true that, even now, when illness backed off a pace or two, that lively and exuberant spirit came back into view?  The reappearances weren’t even rare—just hard to see in the glare of illness.  It was like trying to make out someone standing behind a floodlight aimed into your eyes.
            After that, Lindsey worked steadily—using questions, suggestions, thought experiments —at disentangling that original and enduring self from the illness that had overgrown and, to an extent, submerged it.  I resisted this salvage attempt at first, and still do sometimes, doubtful that illness has not swept away everything; but increasingly, I not only cooperate, but find ways to extend the operation on my own.  Realism is essential.  Lindsey has never denied serious chronic illness a contributory role in the creation of a new and altered self—of course being sick so long changes you; how could it not?—but she is firm in denying it sole or determinative status.  Sickness is like a vine:  it may encase a tree from top to bottom, impede its growth, even obliterate it from view, but beneath the vine certain pre-existing shapes and structures live on. 
            She suggested practical experiments to loosen the stranglehold of sickness.  One of them I recounted in my memoir The Lily Pond.  Over time I had come to believe that my writing was at the mercy of my moodswings.  I could compose wonderfully when up, was utterly inarticulate when down.  I had, I thought, two or three six-week windows a year in which to write well.  These were the energized hypomanic periods heading into or out of wordless depression, before the worthless garrulity of mania.  One spring day in her office, I reported that a productive phase had just ended; I had written several dozen poems over two months, but had now stumbled to a wordless halt presaging darker depths to come.  Why don’t you try writing some more poems anyway? Lindsey suggested.  This I resisted strongly.  Why drag myself through a joyless effort to produce what could only be arid drivel?  Try, she repeated, gently but firmly.  I felt vaguely insulted, as if my writing were a toy we could tinker with, only to watch it fail.  Nevertheless I complied, and over the next few weeks produced, slowly and laboriously, some additional poems, all of which seemed worthless.  But I had written at least, Lindsey pointed out, which I could hardly deny.  The true shock—and the starkest vindication of the experiment—came a year or so later, when an editor and I were compiling poems for a collection, and we chose almost as many from the thought-experiment poems as from the charged-up, “inspired” ones.  Evidently, so I keep learning, mood varies more extremely than the abilities it judges.  My swings still have their say, a strong one:  sometimes I have to give up writing, or, more often, accept changes in how and when and what I can write; but at least, by paying attention to these limitations and adapting flexibly to them, I can stay productive for far more of the year than ever before.
            A lot of this ongoing separation of self from sickness depends on the magic of one little word:  and.  Many of us, not just those of us with a diagnosed illness, are forever asking ourselves:  Am I sick or am I well?  The question is doubly pointless, since the answer is self-evident and always the same:  I am sick in some ways and well in others.  Sickness and wellness are not totalities.  The living self is a process, a continuum of shifting interrelated parts, some of which are thriving, some of which are ailing, different ones at different times.
Here is a thought experiment.  Imagine a woman in bed on a palliative ward, dying of cancer, but surrounded by loved ones who have been nourished by her large, caring heart and who share with her memories of her long, rich, and productive life.  Nearby is one of the ward staff, young and physically healthy; she has never spent a night in hospital or even missed a day of work due to illness; yet she is a person without close human ties, unable to give of herself to others, lacking moreover a strong sense of purpose or fulfillment.  Which woman is sick and which is well?  The question is badly framed.  Both are sick and well, in different ways.
            To know the true dimensions of your illness, to understand its large and inescapable presence in your life, but to deny it sole or even primary power to define you:  that is hope.  To recognize the limitations imposed by illness, yet to feel free to press against them, testing their rigidities, finding new ways to work through and around them:  this also is hope.  And because the entanglement of self and sickness is so universal a feature of mental illness, I can’t imagine a session which does not offer care provider and client multiple opportunites to disentangle them.
            One of the simplest ways to do so—so easy and obvious it would not be worth mentioning were it not so often ignored—is to talk, however briefly, about things that have nothing to do with the clinical condition that brought client and provider together.  Speaking—often at the beginning or end of a session—about a story in the news; asking about the patient’s hobbies and interests, weekend or travel plans:  this kind of talk is never a waste of time, and it is a great pity more doctors don’t do it.  Even if a feeling of shared humanity didn’t prompt it, it can be defended on grounds of clinical efficacy, and even on the grounds of efficient time management by which, I suspect, it is discouraged in medical training.  This “small” talk accomplishes big things, and is a great instiller of hope.  Reminding the patient that he or she has a larger life of which the condition under treatment is only a part helps to keep the problem in perspective (and thus more manageable); demonstrates to the patient that he or she is perceived as a person, not just a case; and very likely reduces the frequency of office visits, since the patient will be less likely to let the medical condition become an all-consuming obsession.
            How is that project you were working on coming along?
            I’m thinking of going to that movie.  What did you think of it?
            Any special plans for the weekend?
            Are such remarks chit-chat?  Preamble?  I have found them to be the opposite.  They are the very bedrock of hope, a natural and sincere acknowledgement that life, and my life, are far larger and richer than what can be encompassed by mental illness and its treatments.
Working Your Patch

Reading British novels, especially mysteries, I always enjoy coming across the phrase “working your patch.”  Or my patch, or his, or hers.  It conjures an almost cosy familiarity with a certain area of knowledge, a piece of ground on which no detail is too small to escape your attention, interest, and expertise.  And, in terms of mental health, “patch” summons a host of useful connections to other kinds of work besides crime-solving:  agricultural (coaxing growth under adverse conditions); tailoring (mending or altering what is worn, bridging torn places); and even computer programming (writing new software to repair glitches).
            Working your patch means taking charge of what you know more about than anyone:  the management of your own mental health.  Your unique history and circumstances, your particular challenges, your constantly changing condition.  (Your case, some would say, though that word is spoiled for me by the derogatory “head case” and by its too ready affinities with medical case histories, in which symptoms, investigation and resolution are presented in a tidy package that rarely parallels the messy ongoingness of psychological tinkering.)
            But aren’t all patients, by definition, already working their patch?  It’s their life, after all.  And what does working your patch have to do with the language of hope?
            The answer to the first question is:  alas, no.  All patients are living a life, but not necessarily with a mindful awareness of their own mental health, what helps and hinders it moment by moment, and what active measures, large or small, they might take to promote their own wellness.  Too often, through a learned passivity and resignation, they have given over management of their condition to a doctor or other professional; yet no matter how gifted and caring that professional may be, he or she simply cannot adequately learn the conditions on the ground in a one-hour weekly session.  Even a one-hour daily session wouldn’t scratch the surface.  No cop or farmer or tailor or computer programmer would think of skimming the patch that way.  Working your patch means living in it, night and day:  getting right down in the dirt, sifting the details, staying alert and trying to miss nothing.
            Fortunately, the provider of mental health care has at her disposal a simple verbal means to promote that very intimacy of self-investigation.  She just has to turn to her colleague, the client, and ask a question that acknowledges firsthand knowledge and primary responsibility. 
            Lindsey does this all the time.  She’ll ask me:  What do you plan to do?  Or:  What do you think might help?  Or:  How would you like to handle this?  (In the police procedural, the consultant would ask the officer in charge:  What’s our next move?)
            It’s important to note that she doesn’t take this tack when I am in really bad shape.  When the cop-farmer-tailor-programmer bottoms out and collapses in his patch, you don’t ask him what he needs.  You examine him for signs of trauma, get him safely to a bed or chair, assure him of rest and sustenance.  Again, hope’s flexible verbal strategies:  You don’t throw a map (much less a mirror!) to the one in a pit.
            Which returns us to the second question:  assuming you are working your patch, how is being asked for your opinion about it hopeful?  It is hopeful because it says (it demands):  you are respected as an active collaborator here, your help is needed; to passively depend on me as your saviour will not do, we cannot make real progress that way; step up and be counted.
            Working out drug dosages, a big part of most psychiatric treatment, offers a practical illustration of this hopeful collaboration.  Over time, it’s become clear that I am acutely sensitive to many psychiatric drugs.  I experience powerful and often adverse reactions to even small dosages of them.  I will never know for sure, but this is likely what made my hospitalization so protracted and calamitous.  As I was plied with Largactil and Stelazine and Mellaril, in escalating doses as my symptoms worsened, I spiralled ever downward into stupors that reached catatonic levels, broken occasionally by fits of violent agitation.  One day, on a brief home release, when I was sleeping twenty-two hours a day, I used my short time awake to slash my wrist with a razor.  On the suicide unit, they followed a “clean slate” protocol, suspending previous medications for the first forty-eight hours.  I began immediately to feel better.
            Lindsey’s willingness to suspend her own skepticism in order to help me find the idiosyncratically small drug dosages I seem to require has given me hope that I am developing the expertise I need to take the lead role in my own treatment. 
            Our Seroquel trial provides a good example.  Lindsey prescribed a low starting dose of 25mg.  She said it would probably not be enough, and that she had patients taking many times that amount—but we were mindful of my history of drug sensitivity.  A half hour after taking my first pill, at midday, the letters were swimming on the computer screen in front of me; my mouth hung open; I drooled on the keyboard.  I barely had time to lurch to the bedroom, crashing into walls on the way.  Six hours later, I awoke groggily, under the covers but still fully clothed.  It was dark outside.  I was a while piecing together where I was and how I had got there.
            Lindsey was incredulous when I told her the story.  “Well, so much for Seroquel,” she said—or words to that effect.[3]
            “Wait,” I said.  (And it was our whole history of her openness to my input that allowed me to go on.)  “I do need some kind of braking when I’m speeding like this—something to damp me down and get my brain and body some rest.  Why don’t we try it in a much smaller amount?”
            “How small?”
            “I don’t know.  A quarter of what I took.  An eighth.”
            Lindsey was doubtful.  Nothing in her experience suggested that such a minuscule dosage could be clinically effective.  On the other hand, though she doubted much could come of it, she didn’t see any harm in trying.  I located a compounding pharmacy and she wrote a prescription for 2mg Seroquel capsules.  This worked like a charm.  It brought a peaceful slowing of my thoughts, like a night watchman turning off the lights on his rounds, and afforded me a good night’s sleep for the first time in weeks.  After a week or so, though, the restlessness and speeding began to come back.  We got the compounding pharmacy to make up another batch of 1mg capsules to allow for finer tinkering.  I tried dosages of 6mg—too much; 5mg—still a little heavy; then 4g, which seemed about right.  At other times, 2mg or 3mg was what I needed.  And, in these tiny amounts—tiny by pharmaceutical guidelines, not by my needs—Seroquel proved a very helpful drug.  Alas, in time I developed some unpleasant and worrying reactions even to these dosages, and we had to give it up.
            Lindsey’s willingness to backburner her own doubts and treat my instincts with respect strengthened my belief that I had hard-earned knowledge about myself which could lead me, through experiment, to help that was tailored to my own needs.  This was hope, real hope.
            Since then, we have made other experiments with tiny dosages.  A titch of this, a tincture of that.  Lindsey has joked about my micro-molecular tinkerings—but she has gone along with them.  And, more, she says that they have widened her view of the range of dosages that might be clinically useful in some cases.  Most of the psychiatric patients I have met—and in forty years I have met a lot—are over-medicated.  This is true even of the ones whose medications are controlling their symptoms well.  With every patient I know, I think the dosage should be knocked down a little, accepting a greater risk of symptom return for easement of cognitive fogging and other adverse side effects.  Physicians tend to err on the side of dosages that eliminate or at least minimize symptoms.  This is understandable.  But cessation of symptoms does not equal active living.  It would be more humane and confidence-building—more hopeful—to engage the patient in a discussion about the possibility of accepting some risk of symptoms in return for keeping their faculties for living a full life intact.  Many might opt, responsibly, for a rougher but more engaged ride.
            Relatedly, after she knew the story of my hospitalization—how, from my presentation at ER with self-inflicted cuts, it had degenerated so drastically into that nightmare of multiplying drugs and symptoms, repeated electroshock series, talk of transfer to a chronic care facility (“bagging” we patients called it, the final disposal of a hopeless case), and a near-coma from which I had miraculously escaped only by the second, providential self-cutting—after hearing all this, Lindsey asked me one day if I had any ideas about how it might have gone better.
            I did—which surprised me a little, as I couldn’t recall ever having thought about a counter-history.  But as soon as I was asked, I saw the measures that might have led down another path entirely.  In fact, I was so sure of them, and of their applicability to many other psychiatric crises, that I formulated them in general terms.
            “People who end up in ER psychiatry are always, whatever else they may be, in bad physical shape.  They haven’t slept well, maybe not at all, in a long time.  They haven’t been eating properly.  Venturing a psychiatric diagnosis at that point is like trying to determine the baseline physical health of someone who has just stumbled out of the bush after a week of not sleeping and living on handfuls of rotten berries.  First things first.  Sedate the patient just enough to insure long, uninterrupted sleeps in comfortable surroundings.  Feed him nourishing, simple foods in small portions on waking.  Continue this until the body’s processes are a little better regulated.  Then begin to ease off the sedation and consider what might be going on.  You will have dealt, as non-invasively as possible, with the metabolic mayhem most psychiatric admissions are suffering from, and you will be starting from a picture at least unclouded by that.”
            This harks back to an old approach to mental illness that never should never been discarded, at least not completely.  Asylum, in its original sense of non-judgemental shelter, must still be the first and most enduring principle of mental health care.  Granting it from the start of treatment is profoundly hopeful in its twofold assurance:  that there is someone worth sheltering,  and that within that sheltered someone there are elements already at work on recovery which must be given a chance to do their work.
            “When I showed up in ER,” I said to Lindsey, “the most florid symptoms they would have seen were my bleeding cuts and “crazy” ideas; but behind these lay a string of all-nighters without food, and behind those weeks and months of isolated subsistence on two or three hours’ sleep a night, fuelled by pots of black coffee and gulped junk food.  I was flying.  And the first thing that needed doing was to bring me back to earth and stabilize me physically.  So please, if I end up there again, knock me out with something simple but strong and let me sleep the first part off.  Two days, three days—keep me groggy, out of it, while my body catches up.  Then, slowly, lift off the lid of sedation and see what you’ve got.  Promise me you’ll try it that way.”
            “I promise,” Lindsey said.  And listened and asked questions as we discussed it further. 
            What do you think would help you right now? must surely be one of the rarest questions that gets asked in mental health care.  And yet it’s one of the most obvious, and most likely to yield useful ideas.  Inside the patient is someone who wants to be well, who has been well before, and who knows at some level, has inklings at least, of how to get from here to there.  The health care provider isn’t bound to act on all, or any, of the answers received.  But it does no harm, and offers immense hope and promise, to ask.
            It’s your patch.  What do you see in it?  This is respectful, humane, and after all, only sensible.

Strengthening the Inner Advocate

I not only receive mental health care, but also, like everyone I know, I provide it.  In an amateur capacity, I suppose I have been consulted on as wide a range of mental health issues as any professional meets in her practice.  This is a given of communal life.  Everyone is a health care provider; there is no choice about it.  The only choice is about the quality of care you provide.
            For the past year and a half, my mom’s worsening Alzheimer’s has been the primary focus of my caregiving.  In the course of caring for her, I have come to recognize many statements that do not belong to the language of hope, as well as a few that do.
            A year ago last fall, shortly after we had moved Mom into a seniors’ residence after my dad’s death, she went out for a walk and got a bad scare.  Intending to walk halfway around the block and back, she took a couple of wrong turns and became hopelessly lost.  Eventually, she knocked on a stranger’s door and asked for help.  The couple calmed her in her distress and led her back to the residence, staying with her until she had her bearings again.
            Though she suffers far more severe disorientations now—fundamental confusions about self and situation—Mom still reverts to this first experience of “getting lost,” telling it over and over.  It seems to have branded itself across her consciousness as a kind of primal loss, with such force that, even now, her retellings of it are amazingly consistent in terms of events and sequence.  Always she stresses her terror and helplessless:  “I didn’t know where I was...I had no clue...I never knew what it felt like to be lost...really lost....”
            At some point, in my responses to her “really lost” story, I began adding the one part that she tended to gloss over or leave out entirely:  knocking on the strangers’ door and asking for help.  I emphasized that it was the correct solution and that she came up with it herself.  By dint of much repetition, she began to acknowledge her successful initiative:  “Oh yes,” she will say, a positive memory trace challenging her disbelief, “I did do that, didn’t I?”  Finally, after many months, I heard her add the coda I had been adding, finishing her dramatic account of getting lost and terrified with the weak trailer, “But anyway, I asked someone and they brought me back.”  Her success has become real enough at least to serve as anticlimax to her story of panic and loss. 
            Many of us, and not just we diagnosed depressives, are amnesiacs who forget even our major victories and world-class mnemonists who can recite the minutiae of our most trivial setbacks.  Even to one losing her recall to dementia, the memory of failure is stronger and more searing than the faint recollection of success.  Another way of saying this is that, in the mental courtroom in which our self-worth is on trial, the case is hopelessly one-sided.  The Inner Prosecutor is brilliant, eloquent and ridiculously well-prepared, with evidence in stacked boxes and witnesses lined up down the hallway.  The Inner Advocate is her opposite in every way, forgetful and dimwitted, tongue-tied, mumble-mouthed, often late or absent and, when she does show up, so ill-prepared that any argument she produces is likely to clinch the opposition’s case. 
            A lot of the language of hope involves prompts that strengthen the Inner Advocate by improving her memory of successes.  Lindsey does this just about every time we meet.  So does my wife’s therapist.  So does every good therapist I’ve ever met or heard about.  Yes, you were in a bad way.  But you got yourself out of it.  First you did...and then you....
            This sounds obvious:  of course a psychiatrist would encourage her patients, acknowledge their progress.  But the acknowledgement must be for specific challenges that were met successfully, and it must stress not just the what but the how of accomplishment.  In another context, contrast the difference from the employee’s point of view in receiving a generic “Good job, keep it up!” from a boss passing swiftly by the work station (perhaps having just attended a seminar on workplace morale), with a specific commendation from the same boss:  “I wasn’t sure how we were going to solve that staffing problem; frankly, I didn’t see an attractive option, but the shift realignment you came up with works perfectly.”  Don’t just blandly compliment; say what was admirable, and why, pointing out the difficulties surmounted.  Knowing the Inner Prosecutor’s love of cross-examination, leave her as little wiggle room as possible.
            Lies won’t work:  even if they were ethically defensible, the Inner Prosecutor will tear them to shreds.  Hope—aka self-defence in this scenario—is built on real and credible achievement.  It’s the hope-builder’s job to find evidence of that, slight to begin with perhaps, and to voice it unmistakably.  It’s wrong as well as useless to tell someone with a tin ear she’s a great musician.  Not only will the assertion crumble in the face of reality, but you may be dismissed for good as a witness for the defence.  
            You’ve been here before.
            I have?
            Yes, I heard you say exactly the same things last November.  And by early January you were coming out of it.
            Well, first you....
            Having run through this kind of exchange many times, Lindsey and I have now reached the point where, on my own, I can begin to spot the faint, hard-to-credit traces of past recoveries and the strategies that aided them glowing like weak filaments through the murk of depression.
            The electrical metaphor is apt.  I used to call it amnesia, the way depression blocks out all memory of its course in the past, including reemergence from it, but also all record of wins in any department of life, any positive detail that would contradict the massive case of self-loathing and pessimism that is flooding the brain.  But it’s not true amnesia so much as amplified negativity, negativity roaring through loudspeakers that drown out dissenting whispers.  The growing science of neuroplasticity tells us that thoughts repeated thousands of times—like the bleak verdicts of depression—become “hard-wired” into neural pathways that are very hard to break out of because the same thoughts have cycled around them so often.  The good news, though, is that, because neural networks are competitive, alternative positive loops can be established.  They will be weak at first; they may always be weaker than their competitors.  But they will get stronger, and the memories and outlooks that cycle through them will surface more readily.[4]  The Inner Advocate will cease being a complete stumblebum.  In time, she may even develop some serious courtroom chops. 
            I applied for that position.  They rejected me.
            And then you tried the other one, and got it.  And you’ve said that’s a better fit for your skills anyway.
            At its most effectively supple and insistent, the language of hope doesn’t contradict the narrative of hopelessness directly; rather, it offers a compelling alternative.  Notice, in the second pair of sentences, how smoothly the responder acknowledges the felt truth of the rejection before supplying a different memory, a different outcome, and a plausible different outlook on the subject originating in the first speaker’s own previously expressed views.  All that in 21 words.  Hope at its best can utter haikus that drown out thunderous novels of despair.
Where’s the gift?

I want to end by touching on the most delicate but also the deepest kind of hope that therapist and patient can give voice to.  This is the hope that comes from viewing mental illness, even when chronic and severe, not just as a blight and an affliction, but also, at least potentially, as an enrichment, even—though this must be said in a whisper—a kind of privilege.  Caution is necessary here because the very notion of gain from illness runs the risk of seeming to trivialize or ignore the immense suffering that mental illness inflicts not only on those directly affected by it but on all those who know them and on society at large.  The losses are incalculable, as I would be the last to deny.  I can barely imagine how different my life might have been had that gregarious boy at the top of his class, the one with the jokes and mischievous imagination, not been struck down by an illness that would withdraw at times but never leave.
            And yet.... 
            One day Lindsey and I were discussing the sad irony that the most severe mental illnesses typically take root and manifest in the late teens and early twenties.  The timing seems especially cruel.  At the very time when life’s energies should be gathering and expanding outward, the individual is forced to shrink inward, to become, in a sense, prematurely old:  retiring from former pursuits, living in small rooms, monitoring symptoms, resting in bed, swallowing pills.  And this is not even to speak of the many who are gone, simply erased, through suicide.
            “But you know,” I said, after we had sat a while in thoughtful silence, “if someone could magically undo those grinding years—decades now—or just the very worst moments, lying catatonic on a bed, cutting myself repeatedly...I’m not sure I would agree to it.  Those things took a lot from me, they’re still taking, that’s obvious.  But...they gave me something too.”
            “How so?”
            “It’s hard to say exactly.  All I know for sure is that I wouldn’t be the person I am today without having gone through this, and the person I would be instead would be less, not more.  I used to know a psychic who spoke of this world as a school for souls. And illness can be like one of those harsh and pitiless teachers, loathed at the time, whose contributions to learning can only be appreciated in retrospect.  Terrible lessons are inflicted, some of which in the long run turn out to be gifts.”
            “I’m sure that’s true,” Lindsey said quietly.
            We’ve touched on this since.  It’s obviously a perspective that a mental health care provider needs to approach gingerly and with great sensitivity.  It’s not for every patient, and not for any patient at all times.  It’s significant that I was having this conversation in my fifties; I can’t imagine it being possible, or not in terms that went much beyond hints, much earlier.  To venture onto these grounds of hope needs the good fortune of having lived long enough, and lived through with enough of yourself intact.  It is tragic how small a minority of psychiatric patients are granted these preconditions.
            Given them, though, a vista of the widest and deepest source of hope opens up and can be expressed.  This is the hope that says that, sometimes, the raw slag of our worst experiences have priceless gifts embedded in them, and that, sometimes, with luck and time on our side, we can pass through the worst trials and emerge with knowledge of ourselves and others that was previously unobtainable, and be stronger and richer persons as a result.  And so, when the time is right, it is not only not amiss, but profoundly hopeful, for the care provider to nudge the client towards some version of the question:  Have you gained anything from your illness?  It just may put a sudden new spin on the frame of reference, propelling by an act of verbal jiu-jitsu the headlong momentum of regret in another direction entirely, toward the lightness of a hope that is actively pursued and consciously internalized.
            A man I once knew believed in asking, about any painful experience:  Where’s the gift?  He believed there was precious knowledge, at the very least an expanded view of life, in even the worst reverses.  Some thought his question platitudinous, or worse, trivializing, but it was neither.  Where’s the gift? locates hope in our existential imperative to sound even our worst afflictions for the meaning and value they might add to our lives.
            Where’s the gift? is the language of hope in its plainest, most exalted and exalting, form.

[1] Goleman, Daniel. Emotional Intelligence. New York: Bantam Books, 1995. p. 87
[2] See previous blog post (March 10 2013:
[3] The quotation marks used in this and other extended passages aren’t meant to imply that I remember  every conversation verbatim; but I remember parts of them verbatim, and they concern topics returned to so often that the views, if not the precise wordings, are faithful to what was said.  The main purpose of the quote marks is to grant dialogue its central place in treatment. 
[4] In his book on neuroplasticity, The Brain That Changes Itself, Dr. Norman Doidge discusses the chemical changes by which “a new brain circuit...rewards the new activity and consolidates and grows new neuronal connections.  This new circuit can eventually compete with the older one, and according to use it or lose it, the pathological networks will weaken.  With this treatment we don’t so much ‘break’ bad habits as replace bad behaviors with better ones.” (Doidge, 170)

If Not, Why Not?

If Not, Why Not?
How Psychiatrists and Patients Talk to Each Other 
Mike Barnes

I started seeing my current psychiatrist, Dr. Lindsey George[1], eight years ago.  We meet once every three or four weeks—not as often as I would like, but we live in different cities and have conflicting schedules.  Still, Lindsey has done me a world of good, and—as she would prefer me to put it—helped me to learn how to do myself a world of good.
            For some time I’ve wanted to write about just what it is that has made this experience of psychiatry so different from my previous ones.  After all, it’s been forty years since I sat in my first office and received my first prescription.  Long stretches of those decades—which included multiple hospitalizations and five years on total disability—were spent running away from psychiatric treatment.  Away from any treatment.  As bad as things got, I didn’t see how they could be helped by telling my story—or not my story, my symptoms—to another clinician who didn’t listen well, who quickly reached a definitive diagnosis, and who offered no strategies beyond drugs that sometimes helped a little but always came with nasty side effects that negated their modest benefits.
            But that is the bad psychiatric experience—which is worth describing, but not what I want to describe here.  What makes good psychiatry different?
            Beyond some indispensable fundamentals, positive doctor-patient relations are hard to define exactly.  Like the best soups, they need a little magic that goes beyond the recipe:  a base of personal warmth and trust and mutual respect, certainly; but also dashes of timely intuition, the spice of sudden breakthroughs and discoveries; and the patience for long simmerings to consolidate gains and prepare for the next step.
            At their core, however, is a special kind of good communication that both comforts and challenges.  It is a way of talking that assures patients they are in expert hands, while helping them to see that they themselves are the most reliable and experienced experts when it comes to their own conditions.  It is a way of speaking and listening by which a physician refers the patient constantly to another specialist in the room:  the healer within the patient.
            Three exchanges I’ve had with Lindsey—and keep having, in various forms, because I forget their lessons and need to be reminded of them—will illustrate, I hope, what I mean by this kind of communication that enables two people to become partners in mental wellness.[2]

Will you still treat me if I don’t take the drugs you prescribe?
            Of course.  I’m  here to advise.  The decisions are up to you.
            The first speaker here was me.  Hesitantly, with a churning stomach.  Everything was at stake.  It was our second session, and although the first had gone well, I was prepared to walk away if I got the wrong answer to the question I’d brought.  Pushed by concerned loved ones, I’d come to Lindsey (or Dr. George, as I called her then) from another psychiatrist I’d been seeing for nine years but with whom I didn’t talk, in a therapeutic sense, at all—just a few minutes of chat while he made his coffee and wrote out the prescription for the escalating doses of clonazepam I was getting by on.  I needed more than a new scrip-writer.  I needed to talk.  To try, if I could, to make sense of my long tangled history of living with bipolar disorder—beginning with my initial misdiagnosis of schizophrenia and eighteen-month hospitalization, with its endless electroshocks and drug trials (including a near-fatal overdose), out of which I’d spilled onto the streets and away from professional treatment.  I needed to sort some of this mess out.  And some of the non-mess:  things I’d found that worked, that helped.  I wasn’t closed to the idea of trying another drug.  But I was closed to the idea of someone making that a condition of talking with me.    
            Of course.  Before these two words, the reader has to insert Lindsey’s look of surprise at the question.  And then my own surprise, amounting almost to shock, at words that came as a revelation:  I’m here to advise.  The decisions are up to you.  Had I heard her right?  I had an expert I could call on, but I would remain in charge of my own treatment?  And was she saying, also, that she assumed at the outset I had the wisdom to make my own best choices, and that the onus was on me to do so?  Yes, she was.  I felt the disorientation of having landed in a place I’d never been before.  Possibilities as well as challenges I’d never guessed glimmered in the distance. 
            For the moment, all I could do was nod gratefully and a little numbly.  Too stunned, at first, to begin the dialogue she’d invited.

I don’t know.  What do you think?
            Lindsey is frank about when she’s reached the limits of her knowledge, when a question stretches beyond her experience and intuition.  It doesn’t happen often, because she’s smart and resourceful and has a wealth of medical and life experience to draw on.  But when she’s honestly puzzled by something, she readily admits it.  Her humility and honesty help me to trust her:  if she has no trouble admitting she doesn’t know, then I can be sure her definite declarations come from genuine certainty, not from the need to appear infallible. 
            And so she asks:  What do you think?  She does me the honour of acknowledging that I may know things she doesn’t—and she does so simply and naturally, without condescension, just as I imagine her turning to another colleague about a point that baffles.  And it makes therapeutic sense, too, to turn many questions back on their asker:  after all, what better place to look for answers to questions than in the lived life that produced those questions?  What richer store of knowledge, both general and fine-grained, could there be than the mind of the person living that life?  As Lindsey said to me early on—another casual, gobsmacking moment—You’re the expert.  Who else, after all, could be?
            For all my long experience as a writer, it still amazes me how much power is encoded in the ways we speak about each other and ourselves.  These new ways of talking with a psychiatrist keep surprising me with their capacity to help me regain a sense of control over my own life.  The control is not built on “You can do it!” bromides, which however well meant often sound false and condescending, but on a deepening reconnection with an original and effectual self that was submerged by mental illness and its treatments.  The right kind of talk can be a skylight through which new views pierce the ceiling of low expectations put in place by self-stigma[3].  For it was certainly such a low self-ceiling, even more than the serious disruptions of mental illness, that caused me to settle for a series of low-wage menial jobs in the ten-year gap between my third and fourth years at university, and then, just three years after graduating with an A+ average, to settle for five years of unemployed seclusion, eked out by disability cheques, shunning treatment of any kind.  Worn out and discouraged, I’d come to believe subsistence was all I could attain and, perhaps, all I deserved.  You’re the expert—like The decisions are up to you and What do you think?—were the ice picks that began to break up this frozen sea.  Slowly, tentatively, I dared to ask for more and to believe I could get it.

Sounds like we have a plan.
              What I’ve said so far may give the false impression that after thirty-plus years of floundering with bipolar disorder, through bad treatments and no treatment, I finally lucked out in finding a good doctor and the rest was smooth sailing.  If only!  Of course, it’s not like that—and can’t be.  I struggle, slip back, recover, find—on my own, and with her help—another trick to add to my tool kit of personal medicine.[4]  It goes on.  Not mere endurance, but not cure either; rather, better and better management.  The ghosts of failure and the expectation of failure still ambush me regularly.  And that is why the special communication between doctor and patient needs the comfort of a sympathetic heart as well as the challenge of a shrewd mind.  And must be why Lindsey chooses to close so many of our sessions with the same six words:  Sounds like we have a plan.
            Look at—listen to—the words.  Sounds like—if I’m hearing you correctly (which I may not be).  We—we’re in this together; I’m not going anywhere.  Have a plan—not the answer, maybe not even an answer, but steps to follow which may help, a hopeful procedure to try. 
Humility, compassion, mutual respect and responsibility.  These are the core qualities that inform the communication I’ve found with Lindsey, the communication we’ve developed together over the past eight years.  Beyond medical acumen and clinical experience, they are at the center of what makes her a good doctor, and at the center of the long and gradual process by which I am becoming a better doctor to myself.
            There is widening recognition these days of the need for “contact-based education,” that is, education about mental illness through people who are successfully managing such an illness.  Yet, as Drs. Arboleda-Flórez and Stuart point out in a recent article, “Despite being one of the most promising practices, contact-based education has not been used widely in the training of health professionals.”[5]  As a first step in changing that, we need more of the sort of linguistic feedback through which mental health care providers learn about the very real effects their language has on the patients they meet.
            How might that feedback begin?  Like most things in life, it begins in a room, and with the words spoken or not spoken in that room.  In the room where mental illness is being addressed, the question might be asked:  Are we speaking here, care provider and consumer, as collaborators on a project—collaborators with different spheres of expertise, and different means and ways of articulating that expertise—but collaborators nonetheless, colleagues and stakeholders in the same enterprise? 
If not, why not?  And what might be changed, how might we speak, to make it more nearly so? 

[1] I identify her here with her permission.  It is also at her invitation that I address her by her first name, though it was years before I accepted that invitation.  The formal hierarchy signified by Dr. had a tenacious grip on me, for reasons that would probably take another essay to explore.
[2] Although the remarks that follow originate in sessions with a psychiatrist, they apply as well to other kinds of health care providers and helping professionals and, ultimately, to anyone wishing to ground human interactions in supportive mutuality.
[3] In their work on stigma and mental illness, Corrigan and Rao define self-stigma as the internalization of “negative attitudes held by members of the public” about mental illness; they discuss the stages by which self-stigma leads to “low self-esteem and poor self-efficacy” and the “why try” effect, which taken together correspond to what I am calling a low self-ceiling.  Corrigan PW, Rao D. On the self-stigma of mental illness: stages, disclosure, and strategies for change. The Canadian Journal of Psychiatry. 2012; 57(8): 464-469.
[4] I first heard of Pat Deegan’s term “personal medicine” from Lindsey and then from Deegan herself in a presentation.  I use it to refer to the entire repertoire of ways and means an individual develops and employs to enhance well-being.  Thus, whether it is a subtle shift in attitude or an obvious change in diet, personal medicine is always practical, a self-directed step toward increased wellness.    
[5] Arboleda-Flórez J, Stuart H. From sin to science: fighting the stigmatization of mental illnesses.The Canadian Journal of Psychiatry. 2012; 57(8): 457-463.

Saturday, March 9, 2013

Asylum Walk (64)

reset: 1) set (a broken bone, gems, a measuring gauge, etc.) again or differently; 2) cause (a device or appliance) to return to a former state, esp. to a condition of readiness

Reset buttons: love, fear, loss, sickness, recovery, sleep, recreation, change, purpose, love

Friday, March 8, 2013

Asylum Walk (63)

The bee shoulders its burly body down into the rose, pushing deeper and deeper into the petals until it disappears from view.

No one passing the still flower could guess at the furious activity within.

Red velvet folds, glowing in the sun...but the place where the nectar pools is black.

Thursday, March 7, 2013

Asylum Walk (62)

The teenage lovers, loitering in the grove, passed each other chestnuts that they found. Due to the furious activity of the squirrels, an unopened nut could only be a freshly fallen one. Sometimes they heard a soft thud behind them (never in front, curiously) and turned to see the green spined planet lying in the grass.

Such sinewy pleasure to open. Finding the seam encouraged by the fall, cracking it on the trunk to widen it; prying the tough green apart with the thumbs, the glossy brown nut lodged in the moist white flesh.

Two in one were lucky, of course. They laughed and kissed, each pocketing one for the bedside table at home.

Three were more rare but less lucky. The third was always smaller, and seemed by its position to belong more to one side than the other; its partner chestnut smaller too, to make room for it. The interloper brought asymmetry, hinting at the difference between freakishness and wonder.

They marvelled at it, for its rarity, but left it for the squirrels.

Wednesday, March 6, 2013

Asylum Walk (61)

The War. Hearing news of a suicide, I feel what a veteran soldier might feel upon hearing of a fallen comrade: sadness spiking sharply, then blunted by the rituals of repeated mourning; relief and disbelief at having narrowly evaded the same fate for so long; fear oscillating between gloom and hope at future odds; a professional determination to hold out for as long as possible.

It’s personal. (And most so in this: that the personal, drawn out over time, becomes impersonal.)

One day when J made a run for it, three male patients—B, R and W—were watching through the windows beyond the Meds Station. J flew out a black door, nightgown flapping, but stopped at the service road, puzzled or uncertain.

Two attendants rushed out after her. When they touched her arms—gently, respectfully—she flew into furious motion again.

Flailing white. (Forcing greater roughness by her handlers.)

“Like a pile of papers in the wind,” B said to the other two watchers. He had written poems in the other life, as they called it.

White here, white there—pieces gusting from the pile, then pinned by awkward fasteners.

Tuesday, March 5, 2013

Asylum Walk (60)

How a conversation starts:

“When you write, ‘ wife, who also suffers from mental illness...’—do you mean she suffers from it, or is living with it? Just asking.”

Which leads to:

What is the difference?

And which did I mean?

Which do I mean?


...Who am I talking about?

Monday, March 4, 2013

Asylum Walk (59)

(Doorman) This is the Hotel Pain. Yes, as high as you can see. And as low. The Hotel Help? Here, too. They occupy the same premises. Share the same space. No, no need for a reservation. Your room is waiting for you. Any one you like. All our rooms come fully equipped.

Sunday, March 3, 2013

Asylum Walk (58)

They value reason who suffer its loss. No—or the whole world would be sane. They value reason who know its loss.

Not pain, not pain plus time. Pain plus operations—which take time.

Saturday, March 2, 2013

Asylum Walk (57)

Medicine cabinet prayer. Don’t just show me shaving mirror news: stubble’s daily trespass and beheading, dental scuzz and floss. Return me to myself all-angledly: what I am, am not, would be, would stop being. Make of prismed rays one beam.

Friday, March 1, 2013

Asylum Walk (56)


Where’s the hope?

Everywhere, or nowhere.

You said there would be hope.

No, I said there is hope. There’s sunlight, too. It doesn’t mean you’re standing in it. It doesn’t mean it’s not night.

When did you finally accept your diagnosis?

If by “accept” you mean absolutely, unconditionally—then never. But as a useful shorthand, I adopted it at age 49, four years ago.

Why then?

It fit facts I could no longer dispute. And it’s hard to talk about anything without a name.

It became useful?

Necessary. I didn’t want to waste another second fighting a name when I needed all of my energy to fight what the name refers to.

So you’re okay with labels?

Okay, not-okay. I’m less interested in labels than in what they mean to the people using them.

Who determines what “high functioning” means?

You do. Who else?