I hate shirts. I have a herniated disc in my neck and sciatica in my right buttock. Both are constant sources of pain. I would gladly live with either for the rest of my life if I could only eliminate the hours I spend each week, trying on different shirts until I find one that doesn’t make me scream inside my head. My torso is extraordinarily sensitive to touch. The slightest breeze makes me flinch. Cloth that doesn’t feel right, doesn’t lie right, causes real mental pain.
It’s hard to explain this pain to humans, but I’ll try. Imagine being totally exposed from the waist up and stepping inside a walk-in freezer, standing still for 15 minutes and willing yourself not to shiver. Or instead of walking into the freezer, consider what it would feel like to take a cheese grater to your chest, looking down in amazement to see your skin shredded yet somehow not bleeding. Now imagine both of those together. Every day.
Living Amongst Humans is not about autism. It is about me. I have elected to expose myself to humanity. This exposure hurts the same as wearing the wrong shirt does. I’m raw and un-salved. I’m vulnerable. I have intentionally put myself into a situation where anyone can put whatever shirt they want on me, and I have no say.
I think about what I have done—irrevocably—by opening my shirt to the world. I have increased my vulnerability. I consciously categorize most aspects of life (see Boundary Issues), and I have done so with my vulnerability, putting my risks into buckets. The greatest exposure is my job. If my coworkers find what I have written—as they inevitably will—the consequences could easily make a significant material difference in my life. I depend upon my salary. That is the reality of the human world. My employment is fragile and I imperil it with every further word.
Next in line on the vulnerability scale is my family of origin. I can live without them. They aren’t essential to my survival. And yet, these are the people I care about most—my wife aside. I don’t imagine losing them as a result of my revelation. But the peril of exposure is there and it is the risk of future confusion and awkwardness, a departure from well worn ways of operating: the unvoiced rules we have followed for over half a century.
The next vulnerable group, of lesser consequence, is my collection of friends. My friends are not less important to me, but the risk is. I don’t excel at forming these elective bonds. I do so carefully and rarely. I treasure my friendships. Since I have been cautious in how I select friends, I don’t fear this exposure. These people already know of my oddities. All I am doing here is putting a name to my quirks.
If you don’t fall into any of the groups I’ve mentioned, then you are in this last, least consequential, group of vulnerability: the public. You are all new to me. If I fail at what I am doing here, if I shrink from the task, I will draw back into the world I was in before I started. No harm, no foul. And yet, I would not be happy, because I would have failed.
I am writing here for a reason, after all. It hurts, but it what I must do now. I feel compelled, but the reason is unclear to me. There is no grand purpose. There is no end game. It is the next thing to do as I ratchet my way through life. I write because it feels good to do so, because the feeling of flow is addictive. The parts that are hard—the exposure, the nauseating self-promotion—are elements I will gradually become accustomed to, following the pattern of accomplishment and accommodation I have traced my whole adulthood.
I was thrown into my post-teenage life clueless and directionless. I hadn’t the faintest idea how to exist on my own, or how to carry out the rudiments of living (see Letting Him Out). The world, my friends, my family and my (eventual) employers were blind to my inabilities because I kept them at a distance, exposing only the minimum necessary for survival. I ratcheted my way through life, following a cadence I lucked upon: try, fail, learn, try, succeed. Each step brought me closer to a functional—if never completely so—person, driven by a goalless compulsion forward.
There is a reason I expose myself here. There is a reason I am determined to struggle to the next level, to molt once again. Failing hurts, of course, but when I am trying, when I am lost in the distraction-free flow of expressing a new skill, it quiets the endless distractions in my head. I don’t notice what shirt I wear. And when I succeed, I dance around the room. Topless.
You are witnessing the latest click of my ratchet wheel.
Don’t stop writing. If nothing else you are helping me understand myself better. I am almost 68, closer to the end than the middle. Just starting to figure out what makes me tick. And wishing there was another 50 years in my future. Working my way from back to front of this blog. The feeling is relief.
I am glad it makes sense to you. Keep reading. I’m not going to stop writing.
This is the most incredible blog I have ever read. The world so often tries to fit everyone into categories, and I believe that by doing so we miss so many other ways of being and thinking. By explaining how you think, you have validated so many ways of being. Thank you.
That is high praise. Thank you. There is much to be gained in learning how others think. It took me so long to even understand that such differences exist.
Thank you so very much for your beautiful website. Our 3 year old was recently diagnosed with autism and it’s been a gift to learn from others who have experienced it directly. Bless you for your candor and your powerful words. I wish you nothing but happiness!
Thank you, Michele. Connecting with people such as yourself is the greatest reward I get from what I write. If I have given you a new perspective then I am gifted even further. My hope for you and your child is all the best.