To frame this post properly… When wandering through the interwebs, I came across a forum of people who were all in solid agreement that despite the claims of some of the “experts” that if/when we learn to conform to the customs and behaviors of the world at large (read: the neurotypical population), our lives will be much easier, this is hardly the case. They went on to say that in fact, acts of conformity can often make our lives even more difficult. This post is written in absolute agreement with this group’s sentiment. 🙂
I apologize for inundating you with the rapid-fire posting of late! In trying to trace my motivation for doing so, I look to the Usual Suspect: the desire to help. Which juxtaposes with a major exam I have approaching soon, the studying for which my brain doesn’t want to run the “app” for tonight, but will likely give in to for most of the weekend. So I guess I’m trying to get some blog-writing out of my system in preparation for the little blog-drought I’m probably going to experience over the next couple of weeks.
And besides–I’m awake. That always helps.
After all, hypothalamic-pituitary-adrenal (HPA) axis refuses conform to the normal physiological circadian rhythms induced by the turning-of-the-earth’s day-night cycles.
It has been this way for seven years. My brain gets tired when it’s good and ready. It calls all the shots. It lives life according to its own timetable; it marches to the beat of its own drum…kind of like the rest of me.
To continue with the (lack of) sleep example, I have little say in the matter. You could say that I’m at the mercy of my brain.
Samantha Craft, an awesome and accomplished autistic author, whose book “Everyday Asperger’s” illuminated many formerly-dim nooks and crannies in my own life, seems to experience a similar phenomenon. Not about the sleep part, but about being at the mercy of her brain, a brain with a mind of its own. She calls hers “Sir Brain”. I’m not sure what mine is. But it’s something, all right.
So anyway, my brain digs in its heels and declines to conform, even to something as simple as Light vs Dark. I mean, how basic, fundamental, ancient, and well-ingrained is that?? And yet, my brain will not be corralled into such compliance. Too “establishment” or something.
Many people in my life have expressed extremely supportive, loving, well-intentioned, well-taken, and well-received concern for this intermittent insomnia, this alternate and unpredictable sleep(less) schedule that I keep. I can’t express how much I appreciate that! 🙂
Because lack of sleep is indeed chain-linked and dot-connected to all kinds of horrendous health effects. My record for longest consecutive chunk of time without sleep is 67 hours, under extraordinary circumstances, those that ignited my first of two forms of PTSD.
I got lucky. From what a dear friend told me, it only takes 24 hours without sleep to end up in the psych ward due to a temporary psychotic episode. Which means that I’m tempting fate, and fate will likely eventually notice.
I have tried everything I can think of to remedy this issue. I read novels before bed, pet the cats, eat decent food at decent times, avoid caffeine, listen to calming music, wind down, read happy things, watch happy things, and so on. I’ve even taken certain supplements, or indulged in a glass of wine, or whatever. Sleeping under my new weighted blanket has helped in many situations. So has acupuncture. So has massage therapy. So has Qigong. So have nondenominational prayer and meditation. These have all been wonderfully effective for me, many times!
But the truth is, no single remedy works for me every time. And there are times in which nothing works at all. I simply have to partake in a rote, routine, repeated activity in front of my laptop until I conk out cold.
I can’t do the “normal” things that other people can do. I wish I could just climb into bed and wind down in the dark, letting sleep overtake me in a natural way, but that’s hard to do when: 1) the dark bedroom itself is a PTSD trigger, and 2) I can’t even feel myself getting sleepy until I’m turned off completely; I’m like a mobile/cell phone in which I’ll work as well at 1% as I do at 100%, and I have to wear down my battery every night, all the way down to 0%, before I’m released from consciousness into sleep.
I’ve made peace with all of the above. That doesn’t mean that I won’t work on rectifying it, but I understand it’s going to take baby-baby steps and it’ll most likely involve a gradual process with many ups and downs along the way. I have a long road ahead, and that’s OK. And when I backtrack and regress, that’s OK, too.
I’ve learned that attempting to lasso my brain and body under my control is a relative exercise in futility.
I remember the early days, weeks, and months of my sleep disruption; I didn’t know how to handle it, and unlike these days, I sure as hell hadn’t made any kind of peace with it. Knowing that I was wide awake when it was time to sleep brought even more psychological distress. Well, the last thing you want when you’re trying to prepare for–and encourage–sleep is more anxiety. I couldn’t win. All I did was lay there for hours, in the dark, clutching my partner’s hand, and shake. I shook with fear, so much fear that for the first time in my life, I found myself unable to move. Gah.
Obviously, attempting to override my natural inclination was so not going to work.
Seven years later, I’ve learned that I must work with my brain and body if I have any hope of their cooperation at all. I often feel like I’m negotiating with my brain. “OK, I’ll just do this until I fall asleep. I won’t try to stay awake; I won’t try to go to sleep. I’ll just take what comes, come what may” and all that.
If I can’t harness my own brain, what does that say about the rest of my life? If my brain can’t even conform to my own preferences, and any attempt to coerce it into doing so only results in a worsening of the situation, then what hope do I have of successfully conforming to the world at large?
The answer is (after almost 40 years this time), very little.
I used to try to conform to the world. After all, the world wouldn’t bend to meet me where I was; it was up to me to learn how to live and function (somehow) within it. It showed me who was boss; it showed me who called the shots. And that wasn’t me. So, it was I who had to bend.
I bent so hard that I damn near broke. In fact, parts of me did break–some temporarily, others on a more permanent basis (thus far). The temporary breakage occurred with the forgetting of who I really was, the spiritual burial of the parts of me that the rest of the world didn’t find acceptable, the acting, the masking, the hiding, and the contorting of myself into something I wasn’t in order to fit in, until finally, finally, last spring, I dusted off that forgotten person and reunited with her.
As for the permanent breakage thus far, what’s my total “damage bill” so far for this forced conformity? Two well-established, moderately-progressed autoimmune disorders, with clues and lab test-detected hints of up to five more waiting in the wings, waiting to kick me when I’m down.
The moral of the story? Never fall down. Yeah. Right. I’ll get right on that. 🙂
So far, so good, though. Because in what I believe to be the nick of time, I found out the truth: I’m an Aspie. It still feels a little strange to write that, but it rapidly became less so, early on in my journey.
Finding out that I’m on the Asperger’s/autism spectrum has been crucial for me in so many ways. The most significant of these is the release from the grips of the neurotypical measurement methods. Sure, that yardstick still applies in some areas – I might feel more comfortable in pajamas than jeans, but if I have to go somewhere, then jeans it is, because although I probably could wear jammies in public, it probably would result in unwanted attention, and the wrong kind of it. Wearing pajamas outside of one’s home is Just Not Done.
But I’ve discovered a treasure trove of latitude in many other more forgiving areas. For example, I now feel perfectly OK with structuring my work schedule like I do to minimize stress and make the best use of my natural energetic ups and downs throughout the day. I’ve given myself permission to become pickier about who I work with. I’ve given myself permission to take more periodic Alone Time during the day and Recharge/Downtime on the weekends.
I could attempt to conform to the neurotypical world in every way possible, shoehorning myself into their moulds and prototype models. Sure, I could attempt to stop working for myself and start working for someone else, because, after all, that’s what “normal” people do. I could indeed have decided to have children, to eat “normal” food, to enter a “normal” professional field, and so on. I could attempt to wrap my head around a conventional mainstream religion and join a church of some kind. I could attempt to wrap that same head around a mainstream political party. I could watch the network TV news cast every evening; then I could say that I was “up on things”. I could try to force myself to “get out more”, participate in MeetUp groups to make friends more easily and quickly, and I could make it a point to be “more social” because, after all, that’s a notch on the neurotypical world’s meter stick.
It’s not that I can’t do these things, per se. It’s a simple cost-benefit analysis. Conformity comes at a higher cost to me (and likely other Aspergian/autistic people as well) than it does to non-autistic people. If I try to do the same things other people do, I/we pay more for it than other people do. In reality, everybody pays something, in the form of spent energy and whatnot; but my/our cost is higher, even though I’m doing the same things they are.
When trying to meet every (arguably unnecessary) neurotypical standard comes at a higher price, why live that way? Why not try to find alternatives?
So that’s what I did.
I’m self-employed. This gives me the control I need in order to keep my sensory nervous system relatively content, my stress levels down to a dull roar, and my brain with a brain of its own all nice and satisfied. I also work in a niche field; a field that grips and sustains my attention and passion.
I don’t go out much with friends, and when I do, they’re chosen very carefully. We have two-to-three other friends in our immediate area and we’ll go out for lunch, dinner, bowling, or farting around at our remote rural property well outside of the city, etc, every one-to-four months or so. Staying home on evenings and weekends helps me keep my batteries charged and it prevents my nervous system from getting utterly frayed.
I don’t watch the news; I find it concocted and insincere. I also find it mundane and hopeless/helpless. I also find it overblown and sensational, with inverted priorities in terms of what’s important to report on. I also, incidentally, don’t listen to much popular music, go see the current movies, or watch mainstream prime time TV. I find it empty and too commercialized, and hardly anything in the contemporary world interests me. To partake in keeping up with the world would effectively burn me out, and what would the point have been? It wouldn’t have been for my own benefit, but rather, probably to try and impress…who? I’m not sure I want people in my life who would judge me harshly for not doing those things, in the first place. Screw that.
I eat healthy food. Incidentally, I think it’s strange that there’s a such thing as a “health food store”; shouldn’t all food be healthy? What other option is there? What would that other option be relative to–“sick food store”? And what’s even more perplexing to me is that the “health food store” is considered the “alternative” as opposed to the default. Wait–what? But as usual, I digress.
I’ve chosen a spiritual path that truly resonates with me, that allows a lot of latitude for actually putting it into practice in such a way that equally resonates with me, and holds hardly any concrete requirements.
I’ve let myself off the hook for “acting neurotypical”, such as stifling “stim”/self-soothing activities, attempting to task-switch too fast, judging myself for all of my shortcomings, acting and masking, and making it a goal to avoid routine by instituting change for the sake of change. Screw that stuff, too. Neurotypical Actress No More. I’m stimming when I want to . I’m taking as long as I need to switch tasks, without pressuring myself to do it faster. I’m watching my food ingredient labels like a hawk.
These are the roads that I’m taking; the roads for others will probably be different. The semantics aren’t important anyway; what matters is whether or not it works for them. All I know is that for me, conforming to mainstream tendencies was simply not an option. It resulted in too many avenues of physical, mental, emotional, cognitive, and spiritual trauma. I was not cut out for this world, not in the way that the rest of its inhabitants live in it. And, that’s increasingly OK. 🙂
PS… Incidentally, I fell asleep last night while searching for the most appropriate header image for this post (lol) 🙂