Wilderness Interface Zone

Continued warnings: Long post, and a difficult one, especially in combination with Part One (found here.)  If you’re still reading–thank you.

Two days earlier, as I cleared my desk and bookshelf, I was happy to find an old-fashioned booklet containing photographs of me when I was a toddler.  About a year ago I took possession of it from my mother, who kept it in a box under her bed.  I promptly lost it in my muddle of a workspace.  Three of the booklet’s eight photos document an event I don’t remember but that show opening steps in my lifelong dance with others’ not only expressed but also acted upon concern for the quality of my life—a dance that swept me up before I could walk.

The first picture shows me sitting in the kitchen of what I think is my parents’ apartment in Hopewell, Virginia.  I’m about a year and a half old. That’s my Aunt Pat there on the floor.  You can see the large bandage covering most of the left side of my face. Aside from the 1950s-era apartment kitchen floor plan, appliances, and related artifacts, that’s the most interesting feature of the photograph.  (For larger view, click into photo.)

Next photo.  That’s cute me, sitting in the high chair shown stage left in the previous pic.  I’m dipping my left hand (interesting because I’m right-handed) into a bowl of cereal or some other finger food on the chair’s tray. Again, the focus of the photo appears to be the bandage on my face, held in place by white hospital adhesive tape applied voluminously back then.  Check out how the tape wraps over my nose and under, leaving a slit so I can breathe.  Wonder how removing that felt.

In this third photo I’m wearing the same shoes, possibly the same shirt and socks as in the other two pics.  I’m touching my head—those thin baby curls—bandaged left side of the face camera-side once again.

So what’s under the bandage?  A surgical wound medical science inflicted in an attempt to remove an eye-catching nevus flammeus—“flaming birthmark,” also called a port-wine stain or blemish—before I grew old enough to suffer because of it.  It was a generous effort undertaken in my best interest, covered by insurance and encouraged by doctors intent on improving the quality of my life.  Since I was two years old or less and completely unaware of the problem, others with unblemished experience made the decision for me.  And so the bandage covers the spot where they’d frozen my face with nitrogen and then tried sandpapering off the port wine stain.  Sandpaper!  Am I a piece of wood?  I must be, since the doctors resorted to crude carpentry to try to raise in my face a more aesthetically pleasing grain. My mother remembers that doctors at the Richmond, Virginia hospital bound my arms in splints to prevent my pulling at the bandages.  I like to imagine that made me look even more like a wooden doll.

Unfortunately for nearly all the school photographers to come, the doctors’ attempt to un-blemish me failed.  The sea of dilated capillaries that gives the birthmark its red color extends well beyond skin deep.  Faced with a highly-colored (blond hair, blue eyes, red birthmark) and apparently visually confusing subject, several school photographers, without asking, tipped my clean right cheek lens-side and took my photograph in near-profile. I find these pictures interesting for what they try not to show, my oblique history with school photographers and their standards for not only what is photogenic but also for how to arrange subjects.

During my senior year at Oil City High School, I received the proofs of my senior class portraits and received a shock.  The portraits were taken at a local studio in Oil City, Pennsylvania, where my family transplanted itself in the mid-70s.  The proofs showed me looking to one side of the camera, like many of those portraiture shots do.  The birthmarked cheek was turned away from the lens to match the pose of my classmates, all of us focusing on something to the lens’s right side—our futures, perhaps. But somebody post-sitting performed photo-surgery on my portrait, removing the birthmark without my knowledge or consent.

It’s obvious to my eye that other touch-up work was done here, too.

As I examined the baby photos for signs of what I might have been feeling at the time, I thought about abstracts for medical articles and other pages that I’ve read arguing the virtue of one treatment for removing birthmarks over another.  Some birthmarks are associated with syndromes and do require treatment.  The extra color I sport on my face is not dangerous, causes me no pain, and poses no health risk.  Yet many articles presuppose suffering in all cases of visible birthmarks and some assert that a child’s birthmark should be removed before she or he becomes conscious of it and begins to suffer because of it.  Some articles document how children have suffered.  From what?  Bullying.  Public humiliations of various sorts.  The trouble of standing out in a way that startles people, prompting them to act badly before they can stop themselves.  In other words, where a child’s birthmark does not threaten health, any discomfort the child feels rises from the actions of others and those actions’ effects upon the child bearing the mark.  Which means the birthmark isn’t the problem—others’ responses to it and how the bearer feels about what happens combine to give rise to trouble.

I have myself enjoyed the blessings of many unsettling moments.  I’ve experienced profiling—almost literally, in the turning aside of my birthmark so that a cleaner profile showed to the camera lens.  Also, I’ve experienced Dick-Tracy-style criminal profiling by floorwalkers in stores.  (If you don’t know who Dick Tracy is, try Batman, where criminals all sport deformity highly tinted with insanity.)  I’ve discovered that people suppose me to be miserable or unbalanced; some have told me that I must be.  Some have assumed I’m of low intelligence, if for no other reason than that I haven’t had the mark removed or buried it with makeup.  Children (and some adults) accost me in stores, asking in alarm, “What happened to your face?”  I didn’t date in high school, I thought—stoically—because my birthmark rendered me unattractive.  The funny thing I see now is that I never lacked male companions.  It was just that dating seemed like the yardstick of desirability, and spending half my life with boys in my backyard or theirs wasn’t dating and didn’t demonstrate in obvious ways social appreciation for what I looked like.

As a newly minted Mormon, I remember in my teens learning about prayer—ask in faith, nothing doubting.  I did.  I petitioned God to remove the birthmark out of his no doubt great concern for the quality of my life.  He did not, perhaps out of the same concern.  When I was about twenty, I heard a lesson in church about blacks, skin color, and mark of Cain. Privately, I asked my Relief Society president if she thought my birthmark meant I had done unacceptable wrong in the pre-mortal existence and been similarly branded.

Very few doctors have shown enough restraint to pay the birthmark no heed and stay out of my face.  Most have hounded me with this question: “Does that thing hinder your social life?”  I suspect some of the disregard for my observations and the outright hostility I experienced talking to doctors about my brain-injured daughter happened as part of their responses to my coloration.  Dermatologists have shown no thoughtfulness at all—all have been at least as bad as those school photographers who tipped my face out of the light to hide its truth.  Before embarking on a second pregnancy, I went to a dermatologist for a skin problem I wanted cleared up.  The doctor was completely uninterested in the rash.  Without so much as a “May I?” he lifted my chin with his fingertips and rolled my head to the side, saying, after brief inspection, “Too bad we don’t have any special programs going right now or we could get that taken care of for you for free.”

“Even if you had a special program that would take care of it for free, I wouldn’t enter it,” I said.  He seemed not to hear, caught up, perhaps, in a dermatologist’s ecstasy.

There’s lots more, but this is sufficient to explain the questions that rose to mind as I looked at the baby photos: Did I suffer?  If so, was that bad, or was the suffering severe enough that my parents, their doctors, or later, my self ought to have taken every step to prevent it?

I suppose I did suffer, but not as deeply or as often as others imagined.  I can’t recall the suffering itself. It doesn’t flood back when I revisit the memories.  The suffering—if that’s what it was, rather than self-pity or some other breakdown of imagination on my part—has faded into the background of an adventurous, often highly unlikely and still wildly unfolding life—a life made possible, in part, by that pesky birthmark of which so many people have tried to relieve me, including, in occasional fits of madness, myself.

Life has been such a success overall that when I look back on what seemed the many embarrassing, frustrating, humiliating, frightening, painful, violating and intrusive moments associated with my coloring, I interpret them differently from how I did back then.

Instead of seeing myself alone, in unhappy state, a victim or target of others’ bothersome behavior, a more complex picture emerges.  I see myself in intimate situation with others displaying their fears of pain and isolation that the nonconformity of my appearance touches in them.  I see discomfort wrestling with wonder in their unwillingness to look questioningly into another’s eyes, because offering themselves in question feels risky.  What if the answer is not what you expect?  What will the difference ask of you in return?  I realize now that many faces bore the strain of the belief that exterior conditions could be arranged like furniture to satisfy their pursuit of self-safety, static comfort, and the aesthetics of the familiar.  I ought not to have been there, a bolt of the unexpected, clashing with what’s agreeable.  Desperation—that’s another one.  Before some could quench it, desperation sparked in some peoples’ faces over mysteries in their own hearts.  I fell into the habit of averting my eyes politely to give people privacy to reflect.

The past consists of events plus the meanings we ascribe to them.  Reach new understanding of an event, shape it into newly seeing language, and you change the past, even to the point of redeeming it.  Because I see matters differently now, in every single one of those old moments, my past, with its black-and-white stills and seemingly fixed meaning and pushpin fate, breaks out into free-wheeling and open-ranged destiny, a still-moving story that has already exceeded anything I could have imagined to ask for.  No one—no one—is taking that away.  The choice to hide or lighten the birthmark or to keep the whole of my to-the-eye appearances remains.  But if doctors had succeeded in cleaning me up, they would have stripped out of my life tremendous adventure—one that came with some suffering, yes.  There’s nothing wrong with a healthy portion of suffering.  Fear of suffering, aversion to it—those lead to exertions of control, to the writing of one’s life story, and apparently others’ life stories, into safe corners.  In my own life, nowadays, the deep feeling and the chaos and pain of suffering have come to signal a rising surge of energy and accompanying strenuous movement forward into something new.  Come what may, I’m keeping the story open—the birthmark stays, for everybody.

So as I looked at the pictures that day, tilted as they were into shadow cast by the overhanging doctor’s appointment for M’s SSI physical, I mused on the presumption of suffering as reason per se to alter or end one’s own or another person’s storyline or to impose other controls in order to reduce suffering. “Suffer” has become a money word, a word that sells solutions that may or may not work to quell problems that may or may not exist.  Many of us freely bandy about the word “suffer” when we fall into “quality of life” chatter in water cooler estimations of someone else’s condition.  What we don’t speak of knowingly is how circumscribing in such language the viabilitly of another person’s life reflects back to us our own anima—fears we don’t wish to face, the nervous strain of avoiding movements in our own soul that we don’t wish to give in to, and risks we strenuously avoid taking, including the call to adventure Joseph Campbell rightly says results in grave illness should we strenuously avoid answering it.

Very often, in judging another’s quality of life to be to one degree or another Lebensunwertes Leben, “life unworthy of life,” we are inextricably judging the quality of our own existence, because quality of life is not the mere matter of individual condition.  Life is the whole nerve mass of our connections to each other and to the world around.  Each person’s “quality of life”—such a slick phrase!—is not the simple sum of how much he or she can or can’t do and how much he or she suffers or doesn’t.  We live in the depths of relationships entwining us—how far we are able to reach to touch and hold with each other, body through soul.  How far we can go into being with others.  In these constantly turning, changing, and unfolding places between people and the states they give rise to, such self-limiting and controlling  phrases like “quality of life” fall to the wayside of actual living language.

These thoughts crossed my mind two days before my husband and I took our daughter to the doctor for Social Security’s mandated examination.  They are part of the reason why his question struck so deeply.  It was not a new question, not for the family of man generally and not for me personally.  We still live in an ancient mindset where a child even like the one in the photos is believed bearer of some form of evil eye or simply too big of a draw on the community’s resources and so is abandoned on the grassy hillside of God’s will or is in some other way driven off or killed.  The language with which we mark each other out is the blood we paint on the boundaries of how far beyond ourselves we’re willing to go or how close we’re willing to allow approach. I’ve heard that doctor’s question a hundred times, in different forms, in sympathetic tones of kind concern or in presumptuous ones—directed at me.  It’s a question that turns my attention sharply, where in the asker’s eyes I catch sight of common hunger to end it all rather than take just one step more and see where it leads.