20 September 2010

Reflections on Return

On Sunday, 19 September 2010 (the day after Yom Kippur), I helped lead our annual "Jewish High Holy Days" service at Theodore Parker Unitarian Universalist Church in West Roxbury.  The theme of the service was "returning to your true self" (based on the concept and process of "Teshuvah"). I've made pdfs of the inside and outside of the Order of Service available for those who are interested. (The order of service as printed is not an absolutely accurate reflection of what happened:  there was a certain amount of improvisation in the heat of the moment...but it's pretty close.)

The following is the complete text of a personal reflection that I delivered during that service.  It discusses my "return to myself" after most of a lifetime spent as a sufferer from BDD (Body Dysmorphic Disorder).  I intend to write much more about BDD on this blog, but this reflection can serve as an introduction to BDD and my experience until I begin my more substantial series of posts on the topic.

Although many of my friends in the congregation already knew about my BDD, many more did not, and afterwards many of them complimented me on my "courage" for bearing public witness to my experience.  

But to be honest, it took little courage.  This story is, in a very real sense, old news to me.  I went through a period four or five years ago of "coming out" to friends, but now I rather take all of this for granted...or perhaps, more accurately, I have gained some distance from it.

The most thrilling (and nerve-wracking) aspect of the service for me, in fact, was calling out "T'kiah," "Sh'varim," "T'ruah," and "T'kiah G'dolah" as my good friend Avi Davis (co-leader of the service, along with me and Reverend Lilli Nye) blew the shofar.  It was like making my public debut as a solo singer.

I welcome any and all comments about this reflection, either public or private.

I’m not Jewish.

My Jewish friends sometimes ask me: “Are you sure you’re not Jewish?” In fact, I’ve often thought that if Jews had reincarnation, that might explain a lot: perhaps I was reincarnated as a shagitz as punishment for some terrible sin I committed in a past life as a Jew—one for which I did not atone by the last Yom Kippur of that previous life. (For those of you who’ve forgotten your Yiddish, a “shagitz” is a boy shiksa.)

Here’s another theory:  my mother actually comes from a secret enclave of conversos living in Iowa disguised as Methodists. To disguise their Jewish past, they even went so far as to become experts in making German-style potato salad, and eating Velveeta sandwiches on Wonder Bread with mayonnaise. But my mother’s Jewish-mother-like behavior gave her away....

But to tell you the truth, my genes are as WASP as they come. My father is an avid genealogist, and he has very extensive records on both sides of my family going back hundreds of years. Not only are there no Jews or Catholics among my direct ancestors—there aren’t even any Lutherans. It’s all Celts, Angles, and Saxons as far as the eye can see, with perhaps a few marauding Roman and Viking genes thrown in.

So why am I, a goy’s goy, standing in front of you today?

As many of you know, I’m an atheist—but I’m an atheist who believes in the power and importance of ritual. Among the rituals in this church that have meant the most to me, which have touched me very profoundly, in the five years that I have been a member of Theodore Parker Church, have been the High Holy Days services for each of the last two years. Two years ago, I had the honor to begin to learn about the meanings of Rosh Hashanah and Yom Kippur from Avi Davis, while working with him on the arrangement of “Kol nidre” that we performed here and elsewhere at that time (most notably in two Jewish assisted-living facilities). That service was, as those of you who attended it will remember, magical and deeply moving. It also happens to be the first service that Joel Neiditz attended in this church, and one that, as he has said, made him feel that he had found a spiritual home. And the High Holy Days service here last year was a very important moment of atonement and return for me in a deeply personal and private way. Thus I have become, in my role as a member of the Music & Worship Committee here, a very strong advocate for making the High Holy Days service, with it’s emphasis on reflection and return, a yearly ritual at Theodore Parker Church.

When Avi and I first discussed today’s service a few weeks ago, he began to explain to me, with his rich and beautiful understanding of the resonances of the Hebrew, the meanings of “Teshuvah.” “Teshuvah” can be translated as “return,” and Avi suggested that our theme be “Returning to One’s True Self.”  When he said this, I knew immediately what I wanted to talk about—for the past five years of my life have been a continuing (and unfinished) process of returning to my “true self” in a very special way and for a very special reason.

Quite a few of you know, but many of you do not, that I have suffered for most of my life from Body Dysmorphic Disorder, an awkward mouthful of a syndrome that is usually referred to simply as BDD. To suffer from BDD is to suffer from an obsessive and most often unrealistic or pathologically exaggerated concern with one or more aspects of one’s body. Some sufferers focus on only one aspect:  a nose that is thought to be too big, say, or breasts that are too small—but the concern might be nearly any part of the body. Other sufferers, like me, have several obsessive concerns; in my case, these mixed and migrated over the course of my life. BDD is similar in many respects to anorexia nervosa, and some believe (although this is a matter of dispute) that the two lie on a “spectrum.” BDD also has much in common with Obsessive-Compulsive Disorder, and the treatments are quite similar.

It is very difficult to convey to someone who doesn’t suffer from BDD the severity of the symptoms. As I understand now, but didn’t for most of my life, I was basically hallucinating when I looked in mirrors. Mirrors are often terrifying and dangerous devices for those with BDD. In fact, the leading book on the condition, by Katharine Phillips (who is based at Butler Hospital in Providence), is titled The Broken Mirror. Some sufferers from BDD have multiple unnecessary plastic surgeries (Michael Jackson seems like a classic case to me, although he did not, so far as I know, have an official diagnosis of BDD). Fortunately I was not one of those. BDD sufferers also have a very high rate of suicide and suicide attempts. Although I never attempted suicide, it is certainly something I contemplated often. And sufferers from BDD are preoccupied with their imagined defect in a way that is difficult for non-sufferers to comprehend, often spending hours every day examining their “defect” and trying to compensate for it or disguise it. BDD is, among other things, very very time consuming.

In retrospect, I came to realize that my first symptoms of BDD began to manifest by the age of 13, if not earlier, and they became increasingly severe and debilitating in my later teens, becoming full blown by the time I was perhaps 18 or 19. But BDD was not on the intellectual or cultural map when I was that age. Although “dysmorphophobia,” as it was originally called, was first identified as early as 1886, BDD became recognized as a disorder by the American Psychiatric Association only in 1987, when it first appeared in the revised third edition of the Diagnostic and Statistical Manual.

So for most of my life, I had no idea what was wrong with me, and the very deep shame that is part of life with BDD prevented me from telling anyone about what was really going on inside of me—with the exception of a couple of girlfriends; and you can imagine what kind of effect that had on the relationships. I was, at various times, treated for depression (which was never more than a secondary symptom), and I had bouts of pointless talk therapy in which I never actually talked about my obsessive concerns. So far as I knew, I was the only person who felt the way that I felt, and, of course, I felt that my shameful preoccupations were true. So I did everything I could to hide them.

I did not hear of BDD until 1995, when I happened to read an article about it in the British paper The Independent when I was living outside Cardiff. And that article was like being hit in the head by a brick.  I’ve always been a skeptic about medical fads and “diseases of the month.” But when I read that article, I instantly realized:  “That’s me.”

The story of my treatment (and more often my lack of treatment) after this realization is a longer one than I have time for today (it is, however, a story in which the terrible inadequacies of American health care play a major role). Suffice it to say that I did not begin to receive adequate treatment over a sufficient period to have a lasting effect until 2005 (and I paid for it nearly entirely out of my own pocket). The initiation of this round of treatment followed a period of a couple of months in which I was close to suicide after being abruptly fired from my last job in August of that year, an event that set off a very extreme bout of BDD. In a very real sense, my membership in the community at Theodore Parker Church, which I joined in October 2005, has been key part of my treatment over the past five years.

BDD is profoundly distorting. It makes one lead, in a very real sense, a double life. For what you truly feel about yourself, when you have BDD, must at all costs be hidden, even from yourself:  it is horrible and shameful in a way beyond imagining. So the face you present to the world is partial and carefully constructed—and immensely stressful to maintain.

BDD infected every aspect of my life:  it distorted and eventually destroyed the relatively few love relationships that I had. It prevented me from forming anything but superficial friendships (and to this day, my life is much more barren of “past friends” than that of nearly anyone I know). BDD played a role in several stupid decisions about my education, and it made performing as a musician a nightmare, not least because I developed obsessive concerns with imagined defects in my hands. (Oddly, it did not keep me from teaching and lecturing effectively; in fact, I was always very good at these things, partly because I was able to use them as escapes from the concerns of BDD.)  For most of my life I had no intimate friends and no social safety net, and extraordinarily low self-esteem. I tumbled accidentally into musicology, which I happened to be very good at, and (very unwisely, as it turned out) I tried to build a surrogate social life around that, after I found that I became very “popular” with other musicologists when I was living in Vienna and making important discoveries. (All but two of these fair-weather musicological friends deserted me when the going got tough.)  In becoming a musicologist, I suppressed and neglected vast parts of myself—talents and passionate interests—simply so that people would like me and so that I would have a sense of identity.

Thus this is the story of return to my true self:  since 2005, as the symptoms of BDD have receded into a (gratefully) dimly remembered past, I have been continually rediscovering the selves that I began to lose when I was in my late teens. It has been profoundly disorienting—for I’ve often had the sense over the past few year that mentally and emotionally I was 19, as if the decades of my life with BDD were a kind of nightmare from which I’d finally awakened—but, disorientingly, into a middle-aged body. I’ve rediscovered my passionate interests in the sciences and mathematics, in writing, jazz, and film, and I have become particularly entranced by every aspect of understanding how humans and their brains came to be the way that they are. I have also become a real musician in a way that I never was before, developing to levels I never would have thought possible in the dark days of BDD. It has been, and continues to be a wonderful and fascinating adventure (although, so far, not a very remunerative one):  for in the deepest possible sense, I have returned to my true self, after being lost for decades, and the life I lead now is, in a sense, an atonement to myself for those many years in the wilderness.

But I still don’t like mirrors, and (as anyone who has tried to take my picture knows), I still don’t like to have my photograph taken.

So even as I reflect on my return to myself, I haven’t yet really “returned to reflection,” at least not in that sense.

Maybe for Yom Kippur next year. (Although don’t hold your breath.)

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Reflections on Return by Dexter Edge is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License.
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