“When I hear that someone over the age of 80 has taken his last breath,” writes J. E. LaCaze, “I usually respond with something along the lines of, That’s a good run.” Meanwhile, when I hear that anyone of any age beyond my own has taken their last breath, I usually respond with something along the lines of, “Oh god, oh god, we’re all going to die.”
In a little less than a month, I will turn fifty. My life effectively has gone nowhere, perhaps at least in part because my difficulties stemmed from unknowingly being autistic and so not knowing there were avenues of support out there. Avenues which remain partly closed off to me because it’s next to impossible to find a psychotherapist covered by insurance who understands autistfic adults, let alone late-diagnosed autistic adults who’ve had their entire life’s story upended as a lie.
This year saw my first surgery, for bladder stones removal and for biopsies which showed no cancer, although the diverticulum is forever. There’s another surgery to come, to biopsy lymph nodes, that I’m not ready to face, having only just had one surgery two and a half months ago. (It isn’t the matter of the potential biopsy results I’m unready for; it’s the psychological weight of the post-operative care that has lots of little things that will need doing which will battle against my executive dysfunction.)
Meanwhile, there’s the ongoing struggle with fatigue, exhaustion, and malaise which remains unexplained and, in fact, mostly unexplored because my primary care physician and I put that on hold to deal with the urological issues, and now the lymph question.
For as long as I can remember, I’ve had nights where looming thoughts of dying couldn’t be shaken off. Not a wanting to die, a fear of death’s eventual arrival. This despite logicially knowing that I won’t be there to experience non-existence because, well, I won’t exist to experience it.
I don’t enjoy birthdays. They are just markers of yet another year of getting nowhere, of being, in some manner, insufficient to the ongoing task.
“I fear the prospect of living in a world that has passed me by and left me behind,” writes LaCaze. I don’t worry about that, although it’s certainly no end of disconcerting. I worry about not living in the world which inevitably will pass me by and leave me behind. This despite the fact that, for all intents and purposes, that world has defeated me already.
I’ll be here until I’m not, and I’m in no hurry for the “not” to come. That doesn’t mean I can see any particular part of the being here that make sense to me. Everything just is, and none of it has anything especially to do with me.
I randomly think of David Weinberger’s early book about the web, Small Pieces, Loosely Joined, and I guess in a bastardized sense that’s how I feel about my life; long ages wandering lost in a desert, with respites few and far between. Maybe that’s everyone’s life, but they are just better than I am at stringing those respites together into a story that makes sense, and that recedes the desert into the background.
Mostly, it’s that whatever the story of my life, whatever parts of it effectively were a fiction because I went undiagnosed for four decades, that story led me here, and here mostly is nowhere. My doctors this year kept calling me, in middle-age, a “young man”, and I know they mean well by that remark, but, come on. Another thirty, fourty, fifty years of this?
I mean, I’ll be here for it, if that’s how it goes. But, still, everyone’s going to have to accept that the lingering question above it all is, “Why?”