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Compassion Roundup, Part I: Who cares if your surgeon is a jerk?

Huckabee at the Republican National Convention

A few weeks ago, Mike Huckabee, making a medical analogy about the alarmingly jerky Mitt Romney, told Howard Kurtz of the Daily Beast: ““The sicker the patient, the less important is bedside manner.  If you’ve just been diagnosed with a brain tumor, you honestly don’t care if your neurosurgeon is a jerk.”  Now I admit that Mike Huckabee is a personable, often funny, natural, and authentic guy, sort of the un-Romney, even though I disagree with him on nearly every political idea he ever expressed including this one.  I disagree with this one so much that it’s been stuck in my head for the last three weeks. Reason? My own personal experience with jerky doctors

Most commentators, including Gail Collins of the New York Times, commented on the weird “damning with faint praise” aspect of that quote, since presumably Huckabee meant to praise (if faintly) our Presidential candiate, who has proven himself even more jerky this week by among other things commenting on an ongoing violent international crisis before knowing the facts, and by suggesting that a statement put out by the American Embassy in Cairo condemning a hate film undermined American values.  Coming from a man who would be President in a highly dangerous, complicated, and non-black-and-white world, this was so misguided and jerky in so many ways that I can’t possibly mention them all in a blog in which I want to comment on Huckabee’s medical analogy.  So for the moment, I’ll simply wonder why Romney, or anyone, thinks it’s not an American value to ALWAYS condemn hate speech, counsel calm, tolerance and compassion, and support the forces of tolerance, understanding, and compassion in every situation and society.  To me this is among the highest of human values.  More about that in my next blog.

So back to Huckabee’s analogy. After endlessly fussing I’ve finally shipped off my memoir, “How I Lost My Bellybutton and Other Naked Survival Stories, to my adorable new literary agent.  While I’ve met many amazing and wonderful doctors during all my medical woes, the memoir details my experiences with some incredibly jerky doctors, including my late son Michael’s neurologist and the surgeon I call only “Plastic Man” whom I encountered during my breast cancer experience.  I think their jerkiness made them less rather than more skilled, that’s for sure.  I won’t talk about the neurologist here, but Plastic Man was jerky mainly because he lacked compassion, and I suffered mightily at his hands, not because he isn’t or wasn’t a skilled cutter. I assume he is, he certainly has a good reputation on that score. But bedside manner? The man was rude, stiff, abrupt, aloof, childish, petulant, and defensive, and became even more so when I developed an infection and became quite sick.  As I detail in my memoir, his jerkiness may have increased because he was afraid of being sued.  This doesn’t excuse it, of course, and in any case research shows that doctors who tend to the doctor/patient relationship lessen their risk of being sued. This makes perfect sense, of course, since people tend to give back what they receive.  The most important thing is, he made my situation even worse than it probably had to be, thereby affecting his skill not just as a cutter but as a physician, who after all should be a healer.  I say this not just because I was terrified and needed reassurance when I was so weak and sick and vulnerable, but because if that surgeon had LISTENED to me, his patient, as a good compassionate, non-jerky physician would do, he might well have been able to spare me all or at least some of that suffering, both mental AND physical.

So I say yes, I guess I’d prefer a jerky surgeon who’s a skilled cutter to a compassionate, non-jerky surgeon who isn’t a skilled cutter, but like almost all things in life it isn’t (or shouldn’t be) an either-or, black-and-white choice.  Why wouldn’t we want physicians—and politicians, and filmmakers, and everyone else–to think of having compassion for the weak (ie non jerkiness), as an important part of their skill and to be BOTH compassionate AND skilled?  As Gandhi and others have said, “The measure of a civilization is in how it treats its weakest and most vulnerable members.” Substitute the word “doctor” for “civilization” and “patient” for “member,” and I think you see how this applies to the medical situation on which Huckabee is commenting, in my view utterly incorrectly.

So here’s a survival tip I learned the hard way.  I put it in my (hopefully soon-to-be published) memoir, “How I Lost My Bellybutton, And Other Naked Survival Stories”:

Survival Tip #17:  Compassion and empathy aren’t luxuries for a doctor, they’re prerequisites. Especially if things go wrong or you’re really suffering and really need compassion and empathy. So if you have a choice, find one who has some.

Mr. Huckabee, I know your analogy was meant to suggest that Mr. Romney has the skill to fix the economy, thereby lifting all weak boats in the trickle-down sense, but I think that the weaker and more vulnerable the patient (or the citizen, for that matter), the more I need and want to be tended to with compassion rather than jerkiness.

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Misguided religion: My heart and soul to Etan Patz’s parents

I almost lost my breakfast this morning upon reading in today’s New York Times that a man named Pedro Hernandez, who confessed to police last week to murdering six-year-old Etan Patz thirty-three years ago, also confessed to some relatives and to a charismatic Christian group thirty years ago.  I can’t even imagine how Etan’s parents feel.

This “Christian” group apparently encouraged (or maybe still encourages) participants to “feel the Holy Spirit and unburden themselves of guilt for their sins.” The  Times further describes the charismatic Christian gathering in Camden that Mr. Hernandez attended 30 years ago a “free-for-all of admissions of guilt, sometimes shocking.”  Furthermore, the article says, the “groups grow hardened and numb to hearing them,” and that one Mr. Rivera explained it by saying that it wasn’t his “place”  to tell because the confession wasn’t made to him alone, one-on-one, but to the group.

This is probably an accurate expression of Mr. Rivera’s own psychological rationalization.  But wow.  That is some religion. Defenders of religion often try to say that we need religion to instill morality, and manage to ascribe this kind of immorality to zealots of “other” religions, but how do we find the morality in any philosophy that would encourage silence and rationalization in the face of such a confession?  How do we reconcile an ethic that finds the “Holy Spirit” powerful enough and sufficient to relieve the guilt of a child murderer?  Or that puts protected confession above any feeling of empathy for the parents of that murdered little boy?  How do we cope with a religion that puts so called “faith” above a proper, conscience-guided sense of right and wrong?  Examples abound of religion–all religions, in history and currently–encouraging blind adherence to zealotry and faith, and/or protection of a misguided, entrenched hierarchy over the development of a moral conscience that can distinguish right from wrong, but really, this all still all reminds me of Eichmann’s Nuremberg defense that he was ” just following orders.”

One has to wonder what other confessions these people heard.   Isn’t there a priest somewhere who understands and can distinguish right from wrong, and could have advised these people?

My heart and soul goes out to Etan’s parents.

McSweeney’s, Geraldo, and Trayvon

I’ve received letters from all over the world on my piece of rhetoric (otherwise known as a rant) in McSweeney’s about the misuse of the word “closure.” Some complimented my literary craft (which is nice), some came from people in the bereavement field, some from parents.   I’ll post one or two of these letters soon; meanwhile here’s the link:

http://www.mcsweeneys.net/articles/an-open-letter-to-the-radio-lady-who-said-we-should-find-closure

And speaking of “closure,” so far I haven’t heard anyone mention it in relation to the terrible death in Florida of Trayvon Martin, though no doubt some misguided soul will do so in the coming days.  Over the weekend, however, I heard Geraldo Rivera say, “the hoodie is as much responsible for Trayvon Martin’s death as Zimmerman is.”  Wow.  Similar to the “he raped her because she was dressed provocatively” defense, the argument may be a new low in an already bottom-scraping America, when someone with actual access to airwaves can get away with making an excuse like that for what really does appear to be a murder of a beautiful, unarmed seventeen year old boy walking down the street carrying some Skittles and an iced tea by an armed neighborhood watch “volunteer.”  What happened for the idea of “freedom” these same people are always crowing about? Would that be freedom for everyone except those who want to wear hoodies?

According to the LA TIMES (and many other news sources): George Zimmerman, whose fatal shooting of an unarmed teenager has sparked nationwide protests over alleged racial profiling, had thought the entire incident would “blow over,” a friend said Sunday. The story goes on to make the claim that Joe Oliver, a ten year friend of Zimmerman, make the claim that he had never seen any indication Zimmerman, 28,  is racist.  Now Zimmerman is hiding amid death threats and demands for his arrest.  I wouldn’t support death threats for anyone, but demands for his arrest? Absolutely.

“Walking while black” is a much, much better explanation for this outrageous act by Zimmerman, no matter what his friend says, and how sad for the loving parents of all the young black children in American, that they still, constantly have to worry about their children in a country that continues to be a terribly racist place, even WITH a black President.  I have sat with bereaved parents black and white; their tears and pain are exactly the same.

And here’s another important point in this matter.  It’s as difficult to even know what’s in people’s hearts, let alone to legislate what should be in their hearts.  It’s for a court to determine whether this guy is or isn’t racist, and this is or isn’t a bias crime, and yet, unbelievably, because of the so called stand-your-ground law, which took effect in Florida in 2005, police could not arrest Zimmerman.  Shame.  Shame.

Well,  we DO know this.  Research has shown that access to the means to commit deadly violence is the best possible predictor of deadly violence.  For example, if you have a gun in the house, it’s more likely that someone (usually NOT an intruder) will be shot and killed, or even that someone will commit suicide successfully.  In view of this and the proliferation of senseless shootings in this country, it seems to me that the gun lobby has become far, far too powerful, scary powerful, and that the narcissistic, gun-crazed, irresponsible climate it has promoted and created and nurtured in the last thirty years is as much responsible for the shooting of this young boy as anything.  How else can you explain the passage of a law like the stand your ground law,  which permits people to use deadly force not only inside the home but on the street if they feel threatened?  People feel threatened by all kinds of things, real and imagined.  If you put a gun in every hand, as some in the gun lobby are pushing for, there will be more blood and death than there would be if you didn’t. A Priori. Why do we keep passing legislation that makes it more likely, rather than less, that this kind of thing will happen?

What is wrong in America?

Offending the bereaved: Thoughts on the controversy around the upcoming DSM V proposed “grief guidelines”

Michael Max Dorf, a month or so before.

Who would have ever thought there could be a controversy around grief?

In the last few months, in my other (non-writing) life as a therapist, I have heard the devastating stories of several people seriously traumatized by their past contacts with the mental health system, people with a lasting legacy of pain from being (probably wrongly) prescribed powerful psychiatric drugs or placed against their will on a terrifying psych ward. I’m definitely not a conspiracy theorist, one who says things like “everything happens for a reason,” or assigns existential “meaning” to every happening, and so I’m sure it’s pure coincidence that I’ve heard so many stories like this lately. I obviously recognize that many dedicated people in the field are doing work that manages to be both life-saving and compassionate, yet these awful stories also underscore the need for folks setting the parameters in the field–the task force considering changes in the upcoming edition of the “bible” for clinicians, the Diagnostic and Statistical Manual (so-called “DSM V) to the various “diagnoses” around grief–to at least try to get it right.  It seems to me that those of us working in the field who are honored every day to do this work, to witness people’s deepest pain, have a duty to at least speak out when it appears that a grave and possibly for some folks dangerous injustice is being contemplated.

Partly because of the experience I mention above, and partly as a response to a wonderful “Open Letter to to the DSM Task Force” posted by Dr. Joanne Cacciatore on her own website (which I’m linking to here) , I’d like to add my own voice to all those professionals and offended bereaved people weighing in on this disturbing and upsetting controversy.

As readers of this blog surely know, I too lost lost a child, my son, Michael, who died in 1994, and I’ve been living with, and thinking, studying, and writing about grief ever since. (Let me assure the reader that I’ve also done lots of other things, including recover my sense of humor.)  My writing inspired by this includes a highly acclaimed novel, “Saving Elijah,”  published by Putnam in June, 2000.  After that I (eventually) went back to grad school to get a second masters degree in social work, mostly in order to work with the bereaved, even though I already knew from experience what one bereaved human being needs from another human being.  More recently I’ve been working on a kind of memoir, which I’m calling, “Excerpts: Complicated Grief.”  Included in the memoir is a recounting of the day I first heard in grad school that we were to label grief that lasts longer than two months (now according to all accounts of the upcoming DSM V apparently further reduced to two weeks) as pathology, call it “complicated,” call it a “disorder.”  Even twelve years after my son’s death, this felt like an accusation.  How could it not?  How could they not see that this is damaging to the very people it purports to “help?” It was as if feeling the terrible sorrow I had felt, sometimes even still felt (still sometimes feel now), wasn’t “normal.” Yet I knew full well that it was “normal,” both from my own experience and from talking to scores, even hundreds of other bereaved parents.

I’ve written the memoir in the second person, and it moves backward from the present to the day of the loss, in an attempt to show how grief can (while still being “normal”) reverberate throughout every corridor of a life, sometimes louder, sometimes softer, sometimes as a source of wisdom, sometimes as source of pain or anxiety, but always present.

It opens on what would have been my son’s 21st birthday.

October 22, 2011, seventeen years after. Stand at the dryer, slap in wet clothes, try to form an image of a strapping young man turning twenty-one today.  See only a sturdy toddler.   Like a failed magic trick.

Go to the cemetery, brush away leaves, place stones on the brass and marble marker. Stand in the thick, humid air.  Say Kaddish,  forget the last part.  Try to remember Michael but conjure up only bones in a tomb, shreds of boy and turtle, earthworms, fecund soil.  Say the word fecund aloud, the hard k sound rattling the teeth. Remember your husband falling into the grave. Wonder why you  come.  Get back into your car pursing your lips as if tasting something moldy. Think of old metaphors, new similes. Grief always comes alone to a child’s grave. Grief is no longer a thundering, hissing monster.  Grief is hollow now, like the blunt thud of rock on stone…….

The core problem comes in my view from the pathologizing of the normal human emotion of grief by calling it any kind of a disorder. And so whether you call it an “adjustment disorder related to bereavement,” and give it one year before you dial it up into an even more serious “disorder,” or whether it becomes “major depressive disorder” at two months, or at two weeks, seems to me secondary to the fact that it is called a disorder in the first place.

A child’s death?   At two weeks you’re still in shock. You’re just getting started at two months. Maybe. Actually, it seems to me that it would actually be “abnormal” for a parent who lost a child to not feel overwhelmed and debilitated by sorrow (and to experience many of the attendant symptoms that echo but are not the same as those for depression) at two months out, let alone two weeks out. I would venture to say this is probably true even at one year.  I remember visiting a friend of my mother’s who at age 100 was still talking about her fifteen-year-old son’s death in a car accident fifty years before as if it had happened that day. Personally, I would still call hers “normal” grief. And so the learned people figuring out the DSM seem to have had it backwards all along, and now seem to be doubling down on having it backwards.

I certainly agree that what people who have suffered loss need is (as Dr. Joanne says), human connection, caring, and compassion, or as the Lancet said: Time, Compassion, Remembrance, Empathy.  I believe it’s an insult to think that a pill could be any kind of substitute for that. I remember a good, well meaning friend wanted me to take medication, but even though I was suffering mightily, walking around in my bathrobe (not only figuratively) for three years, I somehow knew that it would do no good at all to try and mask the symptoms, because a certain amount of tears needed to be shed.  Luckily no clinician suggested medication.  I’m not sure what I would have done, given my state of mind, if one had.  The idea that we can “medicate” away the pain of grief isn’t about the bereaved, it’s about those who are uncomfortable with being witness to pain. As Rumi says,

We are pain and what cures pain, both. We are the sweet cold water and the jar that pours. I want to hold you close like a lute, so that we can cry out with loving. Would you rather throw stones at a mirror? I am your mirror and here are the stones.

In other words, the healing from the pain is in the pain.  So it is.

My favorite definition of compassion is the Buddhist one: “Willingness to be close to suffering.”  That’s what I do, what all of us who want to help do, we open our hearts to someone’s suffering.  We witness.  We don’t try to fix it.   I always say: Be present. Be humble. Be patient. Observe. Reflect. Allow silence. Don’t judge. Accept. Listen

It seems to me that this isn’t only about the pharmaceutical industry, it’s even more about the insurance industry, which seems to be in the business of not paying for whatever it can possibly get out of. (And not just in the area of grief.)  In this case the insurance industry seems to want to get out of any paying for anything other than that which has medication as the first line of treatment, and which labels grief a “mental illness,” or a “disorder” of some kind (an outcome that can stay in a person’s record forever, with terrible, terrible consequences).

It’s a sickening conundrum, it puts people who want to provide support for the bereaved who seek it in a terrible position, and of course it puts the bereaved in an even worse position.  Aren’t we trying to help them?  Surely we are. And one of the things we must do to help them is “normalize” what they’re feeling.  Yes, I wailed at the top of my lungs in a hospital room, but so would you.

As clinicians, we have the “V” bereavement code, but insurance generally doesn’t pay for treatment if you use this as a diagnosis. To receive payment from insurance, it has to be a “disorder.” And so to get insurance to cover our effort to help people make their way through grief, we are actually forced to call it some kind of disorder, even when we know it isn’t.  (This is, by the way, actually true for many situations, for example anger management.  Insurance won’t pay for people looking for help with “anger issues” unless you slap on a some kind of a “disorder” label.

Some, no doubt, will think I’m a hopeless idealist, or a radical left winger for believing that Americans, the “richest” country on earth, ought to provide universal health care that enables people to get the health care they need, no matter what their financial or job situation.  I don’t care.  I still must speak the truth as I see it.  And there simply ought to not only be health care for all, there should be some other terminology that acknowledges the debilitating nature of what I’ve called “big time grief,” and also provides coverage for people to get the proper, compassionate psychological support they need in difficult times.

All of us can be hopeful that the outcry from the grief community around this issue will, like the outcry to de-pathologize homosexuality in the 1970s, result in a de-pathologization of grief.  From a practical standpoint, under our current disaster of a health insurance system, we are required to diagnose some kind of “disorder” or there is no insurance coverage for clinical services.  In the absence of a complete rethinking of the whole system (oh, for such an outcome!; let’s just hope the misguided politicians won’t succeed in their threat to repeal the so-called “Obamacare” coverage for everyone), we can only hope that whatever happens, good clinicians (and particularly psychiatrists with their ready-meds) recognize that the DSM is at best an imperfect guide, and can tell the difference between grief and either adjustment “disorder,” or major depressive “disorder,” whatever must be recorded as a diagnosis to get coverage.

I invite you to share your grief story as a comment.

Guns on Mars

Conversation in front of an exhibition of beautiful photographs of people and scenes in Israel, displayed in our local Jewish Community Center.  I’m standing in front of a photo of a man in an outdoor market.  In the photo, we see his back.  His shirt is up, and a large gun is strapped into a holster around his waist at the small of his back.  The gun is the focus of the photograph.

A woman walks by and says, in what sounds like an Israeli accent: “Is that for real?”

“What?” I say. “The gun?”

“Yes.  The gun,” she says.

“I think it’s for real.  I assume it’s for real,” I say.

“Scary,” she says. “Why is he carrying it in his shirt like that?”

“I have no idea,” I say.  “He must think he needs it for self protection.”

She shakes her head.  “What a shame.”

I sigh.  “Yes.  A real shame.  In my opinion, every single gun on the planet should be rounded up and sent to Mars.”

She laughs and walks away, and as she walks away I realize that I completely believe what I said. As far as I’m concerned, there should be a house to house, factory to factory, storage bunker to storage bunker search of the entire planet, and every single firearm, rifle, bomb (nuclear and regular), AK47, and every other exploding weapon, should be put on a spacecraft and shipped to Mars. Then no one would have them, and we wouldn’t have to “protect” ourselves from them. Obviously, we’d still be the same unevolved human race, characterized by our primitive, threatening behavior, but it would be a lot better, and have fewer global ramifications, if we used primitive weapons, like knives and spears, to express our primitive impulses.

I guess I’m out of step with mainstream, conservative America, huh?

BLOG: Fabulist Fun Fact #2: Michele Bachman, Feverish Conspiracy Theorist

Bachman the Great

My trusty Shorter Oxford English Dictionary (which by the way is longer than everything except the Longer Oxford English Dictionary) defines “fabulist” as “someone who invents dishonest stories.” #2 Fabulist Fun Fact (via the NY Times): Michael Bachman, Republican of Minnesota, and those who believe the pearls that emerge from her mouth, thinks its an “interesting coincidence” that “in the 1970s swine flu broke out under another Democrat President, Jimmy Carter.” Notice the charming word Democ-RAT, which has all but replaced the word Democratic and which Republicans and even some Democrats now use as the adjective form SOP.

Michael Jackson: Is Dr. Murray the only one responsible?

I was listening to a local radio station’s musical tribute to Michael Jackson this morning, grooving to the beat of the wonderful music of this incredibly talented man, songs that are so much a part of the culture, classics like Beat It, and Thriller, and Billie Jean, and I’ll Be There, and it occurred to me that the doctor who is apparently going to be charged with administering a lethal dose of what Jackson apparently called his “milk,” is not the only one who should be faulted or even perhaps charged in this case.  This is so typical of what we do in this culture, focus on one convenient scapegoat to the exclusion of all others who should bear equal or even greater responsibility.  What about the plastic surgeons who agreed to operate over and over on a man with a terrible dysmorphic disorder — to the point where his nose was falling off? What about the social workers and other authorities who allowed an obviously mentally ill man to be the primary caretaker for three young children, without even so much as an investigation?   This last doctor, Dr. Murray, was only the latest in a long line of professionals who at the very least didn’t live up to their very clear professional obligations in connection with Jackson. Social workers, psychologists, and physicians are among those who MUST adhere to professional ethics, and be forced to do so by their own ethics boards. Why does celebrity and money seem to top all?