the weakness that binds

I was on a business trip last December when I had a conversation with someone who was researching the future of health care. The discussion turned to prosthetics, and I mentioned that many prosthetic facilities in the U.S. employed people with limb loss/limb difference for two reasons.

First, some people with LL/D understandably gravitate to jobs that allow them to assist others who confront the same issues they do. Second, and no less important, owners of these businesses recognize that having someone in the building who can “relate” to the clientele is an intelligent business strategy. And the reason for that is that people with LL/D have no problem saying to their able-bodied peers (including their often able-bodied prosthetists), “You don’t live with this, so you can’t understand my problem.” Putting someone with LL/D on the front lines of a prosthetic facility helps to bridge that gap, and allows patients to feel like their stories are being heard by someone who truly understands them.

I then shared with this person that the basic pattern of person-with-LL/D-to-person with-LL/D interactions in prosthetic facilities almost always involves the individuals sharing their respective stories of how they wound up across from each other. I noted that there was always something inexplicably powerful about this information exchange. And at his request, I then told him how I had lost my leg.

There was a brief lull in our conversation when I finished, and the researcher looked at me intently, sizing up the words that, surprisingly, came out of his mouth next. “You know,” he began, “I’m a recovering alcoholic.” And he then proceeded to tell his story. Besides surprising the hell out of me – this man was a casual acquaintance whom I had spoken to for probably no more than an hour or two before he disclosed this fact – it confirmed my belief in the power of stories. And it led to the unsolicited but happy result (since I had nothing new to read) that he recommended a book that he had found particularly useful as he dealt with his addiction.

Thanks to the wonder of e-books, I downloaded The Spirituality of Imperfection: Storytelling and the Search for Meaning that night. And several of the concepts written about by the authors, Ernest Kurtz and Katherine Ketcham, echo themes that I’ve discussed at various times (and in various ways) in less is more: the power of stories; finding what it is that connects people; and the search for spirituality.

Finding parallels between a book about AA and people with LL/D could lead to two basic (and likely heated) misunderstandings, so let me try to defuse those up front:

  1. In no way am I comparing alcoholism/substance abuse to LL/D; nor am I
  2. suggesting that people with LL/D are “imperfect” when compared to their able-bodied brethren.

With that clarification in mind, what does a book about recovery and AA have to do with LL/D?

Kurtz and Ketcham begin by observing that stories, so long a part of human history, have declined in importance in the modern era: “the news of the day and the problems of the hour” have drowned out everything else. Though written before the true rise of a wired world – in 1992 when the book was published, college students like me unfathomably didn’t have cell phones and our sophisticated Apple computers had two central purposes: word processing, and Lode Runner – The Spirituality of Imperfection anticipated it.

Especially today, with information just a Google or Wikipedia search away, we engage in a never-ending search for answers. And we can find them so quickly and easily. My wife frequently jokes that I’m a cyber-stalker as I search the IMDB website for actors whose faces I recognize from another movie than the one I’m watching on TV. Spitting out answers to these kinds of questions, the internet has increasingly become an extension of our own memory banks.

But when confronted with more complex issues, it’s a less useful tool, as “the demand for answers crowds out patience – and perhaps, especially, patience with mystery, with that which we cannot control.” In particular, Kurtz and Ketcham contend that experiential learning – knowledge that can be gained only by living life – constitutes the only way we can find spirituality:

“Spirituality hears and understands the pain in these questions, but its wisdom knows better than to attempt an ‘answer.’ Some answers we can only find: they are never ‘given.’” [emphasis mine] . . . Especially in a spirituality of imperfection, a spirituality of not having all the answers, stories convey the mystery and the miracle – the adventure – of being alive.”

The mystery and the miracle – the adventure – of being alive: that’s the unconscious driver that compels the man in his 60’s at my prosthetist’s office to ask me “How did you lose it?” Because whenever he asks that question, he already know the possible answers: (1) trauma; (2) diabetes/dysvascular disease; (3) cancer/other disease; or (4) congenital anomaly. The man doesn’t really want to know that it was trauma vs. cancer – he wants to know the story behind the cause, as it gives him a narrative that has meaning. You can’t Google the answer to that question.

So what does a spirituality of imperfection rest on? According to Kurtz and Ketcham, our fundamental “flawedness,” our pain, and our lack of control.

One moment I’m walking into an intersection. The next, I’m staring at a gaping, stapled wound holding together what’s left of my leg. The fact that I couldn’t will that not to happen, that I couldn’t ultimately control what happened to me compelled an examination of what my life had unexpectedly become. I needed to understand why I was still alive and how I would cope with my suddenly less-than-100%-capable body.  And I knew that the glib, pithy answers that would have come pouring out of my mouth before my accident now rang hollow.  (Accepting this lack of control leads to the concept of “surrender” that is so integral to AA.)

Shortly after returning home from the hospital, I received a card from a high school classmate who helpfully opined, “Remember, everything happens for a reason.” If I could have hopped to her place of employment and strangled her I would have. Clearly, she didn’t mean to activate a murderous rage when she penned those words, but what triggered me was the implicit meaning behind them: “you don’t understand why it happened, but it’s part of a bigger plan that God has laid out for you.”

Alternatively, a spirituality of imperfection, argue Kurtz and Ketcham, focuses not on “sweetness and light,” but rather, “understands that tragedy and despair are inherent in the experience of essentially imperfect beings.” They therefore declare it, “above all, a realistic spirituality.”

As a person who grew up without any strong religious beliefs and an abiding skepticism of any faith-based conclusions, an experiential concept of spirituality makes sense. Observe the way the world actually works. Pay attention to the things – especially the bad – that happen to you, and accept that the negative cannot be walled off or denied. Don’t bathe tragedy and despair in the warm light of a larger plan or destiny that glosses over the resulting pain. Actually experience it.

Selling the concept that tragedy and despair are our inherent destiny isn’t likely to lead to a rush of converts. What possible reason could there be to embrace a philosophy that’s so obviously a downer? The answer, say Kurtz and Ketcham, lies in the fact that this is what allows us to meaningfully connect to other human beings:

“From the central act of confronting the truth of one’s own weakness began the development of that characteristic most admired by [the] earliest saints – the sense of compassion, the recognition that others’ weaknesses render them not different from but like to oneself. [emphasis added]

I said earlier that the man at my prosthetist’s office wants to know my story because it provides him a narrative that has meaning. The meaning it provides is connection. It’s the creation of a community of people who understand that they share something fundamental. (It’s this reality that not-so-coincidentally also leads to the aforementioned practice of savvy prosthetic business owners employing people with LL/D in their facilities.)

And the act of telling one’s story is transformative both for the teller and the recipient, claim Kurtz and Ketcham, because “[a]ll ‘community’ begins in listening,” “to listen to others in such a way that we are willing to surrender our own world view.”

In this way, a community of storytellers and listeners collaboratively re-map their world so that it makes sense. Imagine (or remember) the disconnection that LL/D imposes on people living with it relative to their peers. And then consider the following passage:

“Through the practice of hearing and telling stories, we discover and slowly learn to use a new ‘map,’ a map that is more ‘right’ because it is more useful for our purposes. Using the map gives some sense of place, of how things are located and how they fit; and this flows into a developing sense of how we fit, of self as ‘fitting’ . . . fitting into some meaningful whole. That ‘meaningful whole’ is twofold: It involves first our relationships, for that is our name for our ‘fittings,’ but it also involves and, indeed, is our very identity – who we are. In a very real sense, we are defined by our relationships, our connections with all reality; what happens in the re-mapping of storylistening and storytelling is that in telling our own story, we come to own the story that we tell.

In simple terms, by telling our story and having others listen to it, we become comfortable in our own skin. And that connection comes not from regaling people with tales of our triumphs and superhuman strength, but rather, by sharing our weaknesses and imperfections.

I’ve attended breakout sessions at the Amputee Coalition’s annual conference where grown men are reduced to tears while telling their stories. And they emerge from that experience not embarrassed or weakened, but rather, relieved and strengthened. That happens because they are, in a community setting, taking ownership of their own story, defining who they are in their own words, instead of letting others (either in fact or in the storyteller’s imagination) create a narrative about the objectified “handicapped person.”

But, as Kurtz and Ketcham point out, “community requires more than the sharing of stories – true community requires the discovery of a story that is shared.” For example, when I tell my story to someone who is able-bodied, their reaction usually runs along one of the following lines: (1) you seem to be getting along well [read, better than I would think a cripple could get along]; (2) to have survived that and seeing you stand here today is inspirational/heroic/[insert other cliché that causes discomfort and embarrassment here]; or (3) I can’t imagine going through that myself.

Tell the same story to another individual with LL/D, however, and I often get silence, nods of understanding, or general statements of acknowledgement that, to a casual observer, might appear callous or vapid (e.g., “That’s a bitch.”) It’s not that people with LL/D are unfeeling or less capable of expression than their able-bodied peers; it’s that they understand the story viscerally, in a way that defies intellectualization. Because we have, literally, walked the same path, we have the same story (albeit, each one has its own uniquely personal contours).

Critics (and I, in my previous life) might criticize the authors’ ultimate conclusion as, alternately, New Age drivel, Liberal hooey, or hopelessly naïve:

“Once we accept the common denominator of our own imperfection, once we begin to put into practice the belief that imperfection is the reality we have most in common with all other people, then the defenses that deceive us begin to fall away, and we can begin to see ourselves and others as we all really are.”

While this kind of language does reflexively trigger those reactions from me at first, when I place it in the context of my actual experience with LL/D, it has a resonance that I can’t easily ignore. And as an individual who now, more than ever, wants people to look past the things that separate us – obvious things like a prosthesis, or religion, or nationality – bridging that gap by acknowledging our imperfections – everyone’s imperfections – seems less like a New Age dream, and more like a modern necessity.

The Spirituality of Imperfection (304 pp)

by Ernest Kurtz, Ph.D., and Katherine Ketchum

Bantam Books, © 1992

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