The One Thing About Me

Three or four reporters have interviewed me since I started living in a tiny house on wheels.

The first two focused on my disability in their final product, which I consider the least important thing about me.  I saw the film clips after release.  My stomach fell through the floor and onto the hard ground beneath the trailer on which my house stands.

The third writer published a print piece which I have not yet had the courage to read.  I skimmed the portion which describes the interview with me.  He incorrectly identifies me as retired and attributes a rather heady quote to me that I never said.  I stopped reading.  I briefly considered calling the woman for whom I work and giving her a forwarding address.  Being retired, you know.  If he also mentioned my disability, I didn’t see it in the few seconds that I spent on the paragraphs following my name.  But I would not be shocked since he mentioned it several times in our conversation.

I spent the last month trying to find shoes which I could wear without falling off of my feet.  This quest became a topic of lunch time conversation along with consuming many hours of internet surfing.  I had purchased two pairs of the same brand and style four years ago.  Holes having appeared on the toes of one and the sad wear pattern of the pronater on the soles of both, I finally accepted that I could not continue wearing them.

I ordered a pair of shoes from Amazon of a kind and size with which I’ve previously had success.  They squeezed my toes.  Given that my toes already have severe spasticity, narrow shoes tend to raise them skyward and send me toppling.  The second pair didn’t fit because I sized up.  I sized down for the third pair, and they fit but the buckle fell off as soon as I removed them from the box.  

I went back to wearing the least decrepit of the two old pair, and surfing shoes stores on the net.  I learned that I could get quality, Made in England Doc Martens (one of two brands in which I can actually walk) if I want boots or men’s styles and sizes.  I found two styles of Dansko’s at the one shoe store in Lodi, but neither had buckles and neither came in my size.  I can’t wear slip-ons and my spastic gait pops Velcro open.

Finally:  I found two pairs “new without box” on eBay, one exactly like the old reliables and one Made In England original Doc Martens.  Oh joy, under $70 for the two pair, and I am shod again.

We gimpy types face this dilemma all the time.  What shoes exist which we can wear?  Sturdy, long-lasting, reasonably priced.  God forbid that they should also be decent-looking.

Just once, I’d like to walk into a department store and buy the prettiest pair of insubstantial heels on the rack, and sashay out of there with my head held high, swinging my arms to and fro.  I’d like to wear cute little sandals with thin straps and delicate ties around my ankles.  I’d like to don flip-flops and slap my way to the grocery store.  But I can’t, because — gesturing — I’m disabled.

Because of that one fact and all the associated difficulties, saying the word fixes my identity in place.  It becomes the only quality which anybody remembers.  This could be why I developed a warped sense of humor or a slightly acid tongue.  Maybe it explains my cultivation of wild curly hair and buttons which say things like I’m Only Working Here Until I Become A Rock Star.  I obsess over the limits which my condition places on me, but I’d really rather you all think about something else, like my witty repartee or my kind-hearted tendencies.

Tonight I heard a story about a new podcast created by a woman who is Muslim.  She says that one thing seems to be the beginning and end of what people know about her.  She never gets beyond it.  I feel that way about my disability.  I just want, some day, to have someone look at me with a puzzled expression and say, I never noticed.

It’s the fifteenth day of the sixty-fifth month of My Year Without Complaining.  Life continues.

NPR STORY:  “TELL THEM, I AM”

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