The hitchhiker’s ride to the galaxy

Glendale in California was a great place to be from as suburbs of Los Angeles go, but I lived in a world entirely of my own making, only occasionally checking in on the banal happenings of an otherwise happy childhood.  I assiduously avoided anything that involved competition, such as throwing a ball, or catching one.  I sought shelter from the ordeal of growing up by exercising a vivid imagination.  My idea of fun?  An afternoon organizing the kitchen utensils, saucepans, and casserole dishes, or alphabetizing the spice rack.  Where did I find the time?  Usually between the tarragon and the turmeric.  I was fascinated by cars and the idea of driving; most of my childhood was spent imagining the kind of car I would drive, down to the last detail (like the sound the doors made when they closed), and pretending to steer, accelerate, and brake while sat in the back seat of my parents’ car en route.  Wasted youth?

I remember an 18 year-old boy in the summer of 1984; I am driving my 1978 Volkswagen Rabbit east on Santa Monica Boulevard in Hollywood toward Silverlake.  It is about 4 in the afternoon, the time of day when the setting sun squeezing through the Los Angeles smog makes the city feel dirty and orange. It’s hot, so all my windows are rolled down and my sunroof is open.  My back is wet from sweating pressed up against the seat.  Corey Hart’s Sunglasses At Night is playing on the radio.  I usually drove home to Glendale by way of Hyperion Avenue in Silverlake, the way I was headed, because lots of gays lived there and I liked seeing if I could spot them on the street.  That summer, I began discovering and exploring a whole new world — you had to be let in by someone who knew and when you were you felt as if you belonged to something big, a thriving secret underground that had been waiting to welcome you. There was an air of secrecy about it, and just a touch of naughty that made it feel oddly louche.  But that life came to a sudden and dramatic end when I got ill from the big disease with the little name.  It was left to me to change course and make sense of it — in a very real way, my midlife crisis was actually a crisis!

HIV/AIDS is a disease which rules one's daily routines, thoughts, and has a tendency to take over the conversations of the “POZ.”  The subjective experience of being diagnosed with a serious illness gradually gives way to a process by which one becomes what I have termed a “professional patient” whose raison d’être becomes everything associated with their disease; I noticed this transformation in myself many years ago as I struggled to find meaning in endless specialists, tests and procedures, and downtime while “real people” went to work, fell in and out of love, and hurried through busy days of obligations to partners, family, and friends — how can I compete, I thought, when all I have to do is show up fifteen minutes before my appointment with my insurance cards and remember to fast before I have blood drawn for my quarterly labwork?  In a discussion of his novel, The Magic Mountain, written in English and published in The Atlantic in 1953, Thomas Mann states that "what [Castorp, the protagonist] came to understand is that one must go through the deep experience of sickness and death to arrive at a higher sanity and health.”

If you live in western culture, whether you are religious or not, it is extremely difficult to avoid falling into the trap of believing that things like health, happiness, or prosperity are rewards earned by the meritorious and virtuous; conversely, bad things are “deserved.”  People seem to want (or is it they need?) to believe that there is a hidden logic to the chaos and variability of life — a deity dispensing goodies on demand like a vending machine, karmic justice, and so on, but fate befalls us all, and it is neither conscious nor persuadable, nor predictable, and is notoriously unresponsive to our most fervent entreaties, try as we may.


I have heard people describe a chronic illness at midlife as having your life turned upside down; that was a shorthand I used for many years to make sense of my own life.  I have come to believe it’s more like a sock that’s been turned inside out.  Right way ‘round it looks fine, or at least what we expect a sock to look like, 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.

My first car was that Volkswagen Rabbit I drove down Santa Monica Boulevard on a hot August afternoon, a world of triumphs and tragedies ahead of me.  My last was a Nissan Maxima I bought two days before I fell chronically ill; in between there was a Mustang, a Mazda, and even a Chrysler, none of which were ever parked in my make-believe driveway.  For all that pretending to drive during childhood, I no longer do.  I never bought a car I thought I would, but then again I never imagined I’d be driving my words down an information superhighway — steering, accelerating, braking — finding my way en route without a map.  It goes without saying… actual mileage may vary.

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