Can you pack your soul in bubble wrap?

Shock of all shocks, the face fascinates me. Composed of four of the five senses – sight, smell, taste, and hearing – the face is arguably the most important part of the external body. (I guess it could be disputed that ears are part of the head not specifically the face, but I see with my ears so…..) Communication is one area in which the face is crucial for the mouth usually produces language, the ears hear it, and the eyes gage facial expressions. Food is consumed by the mouth with both the tongue and nose involved in not just enjoying the experience but providing warnings of the presence of toxic substances. Eyes are also key in detecting dangers from the environment and their position in the front of the head is either the chicken or the egg explanation of body orientation. Looking at it like this I am not surprised faces are given so much attention and importance by human beings. I have some issues with the degree to which this significance has been magnified beyond the biological, but that’s a topic for another day.

My face and I have gone through quite a bit together. (Details can be found in “What My Classmates Never Knew.”) For years I hated it considering it to be separate from the rest of me: from the neck down, I was marginally acceptable, but my face was a different story. I loathed it, thought it was hideous, and if wearing a paper bag had been an option, I would have happily done so. The unacceptable nature of my face was the cause of all the surgical pain as well as the problems I had fitting in with my peers. In my mind, it was a separate entity that existed outside of who and what I was as a person. Known as disembodiment, this is a common mental construct for many disabled people who cope with internalized hatred of the “disabled” part of themselves by making it completely distinct from what they consider their essence.

In college I realized I didn’t have to do this. Eventually I found a way to inhabit my body with a bone-deep certainty that for better or worse nothing can shake. It goes beyond merely living in my own body for I know I am it and it is me. By necessity part of that process involved addressing my body image issues because being a form you loath is not particularly pleasant. Though I managed this, it is a far more tenuous thing. Loss of the rest of my sight, the ending of romantic relationships, and surgery to remove infected implants have shaken it for a time only to emerge sooner or later typically stronger for the experience. Looking back I know the steps I took to get to this place and the effort involved, but I cannot quite understand how I wound up here. Actually, of late, it’s more like there.

About 18 months ago, I started having issues with my facial relationship when I began wearing dark glasses to protect my eyes. People responded to me differently and some who knew me went so far as to tell me the covering of my eyes was a big improvement. One cashier actually looked between me and my photo ID then suggested I get a new picture. When I took off my glasses and said, “I think it’s just the glasses,” she became very quiet. All of has messed with my mind in countless ways. Who wants to be considered attractive while wearing glasses only to have the person flip out when they come off? Not me. Ever.

Because of the reconstructive surgeries and removal of implants, my face hurts constantly. For a long time it was only an issue of pain, but since the glasses it has become a constant reminder of how unacceptable my appearance is to most folks. Even though I’ve stopped wearing the glasses, I cannot seem to get my facial relationship back on track.

Rarely does my face receive positive attention either verbal or physical. For years I sat as doctors lectured about my face’s failings which had a definite impact on my body image. More significantly my face was touched by detached, clinical hands that caused pain. By comparison there has been little positive physical attention given to it. Beyond the fact that people are afraid of hurting me, I know we just don’t touch each other in that way except when being intimate. Given the dearth of that sort of thing in my life, my face has been neglected. I feel that lack as an ache so deep down inside I have no idea how to touch let alone tend it.

Sometimes I have an urge to hide my face because I feel vulnerable either purely emotionally or in terms of attractiveness. Oddly enough, if I happen to be naked and somehow feel either of these things, I don’t dive for my clothes but fight the yearning for a paper bag.

Fortunately I can mostly separate how I feel about my face from my actions. I haven’t reached for a paper bag yet, but there has been an increasingly intense urge growing to wear my dark glasses. The other night I almost lost the battle. I know sooner or later I’ll get a grip, but right now I feel as though my face is this misused creature yearning to be wrapped up in a soft blanket and stroked gently like we do to the backs of upset children. While I must be protective of it on a physical level – getting my face hit is painful and potentially significantly damaging – I feel its vulnerability on an emotional level with a sinking, knotted feeling in my gut. Knowing this feeling will pass does nothing to alleviate the fragility I feel inside.

Right after I wrote the rough draft of this entry, I began to read Emily Rapp’s “Poster Child: A Memoir,” which explores similar issues better and with more art than I can. Worth reading.


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About Jen

After acquiring a degree from Vassar College in psychology, I moved to Western Mass where I ran a peer mentoring network for disabled college students as well as activism and organizing around disability issues. I also conducted research on disabled women’s body image. An Upstate New York native, I eventually followed my heliotropic nature to the sun of Southern California. I divide my time between writing (disability fiction and essays) along with moderating San Diego Bisexual Forum which is one of the oldest groups of its kind in the country. In my off hours I can often be found in my neighborhood live music venue enjoying our local talent.

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