Inside Out Socks

I think anyone who has come out on the other side of a really severe illness knows that it completely reconfigures you.  I am about to turn 55.  There was a very real chance that at 40 I would not see 41.  Instead of a sports car, a young trophy boyfriend half my age, or a toupée, I got a wheelchair and a walker — one of my friends calls the former my “stroller,” another calls the latter my “Galen” since we both used to work for a man named Galen Walker (who went from selling guitars at Guitar Center to producing Japanese anime films… such is the crazy business we call “show”).  My midlife crisis was actually a crisis!

What never ceases to amaze me is “the look.”  Not just from the average Joe (or Jane) I pass on the street, though I should mention I’m not in the habit of blurting out my diagnosis at anonymous passersby.  Nor am I talking about the well-intentioned person who sees me sitting in my wheelchair and feels compelled to say, “If you don’t mind my asking…”.  You’d be amazed, or perhaps you wouldn’t give it a second thought, how many people go through this elaborate pretense of acting as though they didn’t quite hear me when I answer their question.  Once I’ve repeated myself, when they can no longer pull off the didn’t-quite-hear-what-you-said complete with improv (usually the standard hand cupped behind the ear), they just stare in silence, a dull expression on their face, expecting me to give the sixty second Powerpoint presentation on what's wrong with me and assure them it’s not contagious.  After a year of COVID everyone is more aware there really are invisible monsters hiding under the bed that can end a life or dramatically alter its trajectory and we were smart, as kids, to insist on sleeping with the lights on so they wouldn’t reach up and drag us down into their lair and feast on our bones as though they were devouring a plate of wings; my monster was quite posh though, insisting on a ramekin of Agrodolce in place of the rather pedestrian Ranch dressing dipping sauce, and a nice cheese board with an imported Roquefort or maybe a Manchego from Spain and Carr’s Table Water Crackers for afters.

People who have been ill their whole lives, born with some congenital affliction, have a distinct advantage over those of us who confront illness at some point in our life’s course, be it due to an injury, old age, or a worldwide pandemic such as COVID or AIDS.  Theirs is not a loss, for how can you lose what you never had — legs that walk, eyes that see, a million and one things our bodies are just supposed to do?  Much has been made of how the Kübler-Ross model applies not only to death and dying, but to any significant loss.  Denial, anger, bargaining, and depression may very well be identifiable “stages” we go through, and I could point to each of those in my own life since January 18, 2007 when my neurologist sat on the edge of my bed at Cedars-Sinai Medical Center in West Hollywood and asked me if there was anyplace on earth I had always wanted to go but hadn’t (the answer was London, by the way).  But only when I embraced Kübler-Ross’ fifth stage — acceptance — did I understand that her other four stages were descriptive and not prescriptive.

I do not mean to imply that I’ve folded a daffodil behind my ear and everything is just hunky-dory these days, that I’ve attained some zen-like quality of acceptance in my life that has supplanted all the denial, anger, bargaining, and depression of the last decade and a half.  Far from it, I struggle every day. But I have accepted that acceptance is my only option.  I suppose we could debate “why” I am in the position I am in, but that is really moot at this point.  I am physically disabled, I require the care that is provided by my assisted living residence — and both of these things will be true for the rest of my life.  No amount of acting like I’m not bothered by that, cursing the name of Ronald Reagan for putting ideology and homophobia ahead of science and reason and failing to nip the HIV virus in the bud before an anonymous one night stand with a guy in the Wilshire District who drove a white SUV introduced it into my blood stream, promising I know not who (I suppose Thor is just as good as Yahweh) I’ll be more careful if I could just have another chance, or feeling sorry for myself that I always get the short end of the stick (ooo! was that a double entendre?) will change my circumstances.

sock

I don’t believe in the guiding hand of fate any more than I believe a prayer said nine times in a row will stop a piano from falling on my head, rain on my parade, or back pain.  Fate is neither conscious nor persuadable, and is notoriously unresponsive to rosaries, candles, and communion.  The unavoidable truth is that accepting things which are outside your control is the only way to cultivate peace and tranquility in your life.  Once you let go of notions of what it ought to be, or even what we might hope it to be, and accept that it is what it is, life becomes less about what we think it should look like and more about what it does look like.

I have heard people describe an illness at midlife as having your life turned upside down; but I think that is wrong.  It’s more like a sock that’s been turned inside out.  Right way ‘round it looks fine, but the other way is much more complicated, even messy; the stitching is more obvious, the fabric less uniform, the color a bit off.  It lacks the fit and finish we expect.  It took many years but that’s what illness has revealed (and is still revealing) to me — the inside of the sock.  And its effects are just the other side of life.

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