“All we have to believe is our senses: the tools that we use to perceive the world, our sight, our touch, our memory. If they lie to us, then nothing can be trusted.”
— Neil Gaiman, American Gods
Having a quote like this in the context of a Gaiman novel is one thing. The man can seemingly do no wrong. Having it head the top of a chapter in a book about Sensory Processing Disorder… it drives the point home a little too well.
Before I get going on this, I want to say that I’m not looking for sympathy here. Quite the reverse, I write so I can reinforce the idea in my own skull that I can power through and find solutions. A little understanding would be nice, but I’m still working on that part myself. I don’t expect the outside world to ever really be on the same page. I can’t expect that. Everyone’s got their own lives to lead, and few rarely consider what’s happening inside the head of the person next to them, especially if that person’s a stranger. No… this blog post is more about explaining to myself what’s going on with me, now that I can finally start to wrap my head around the whole idea. The first principle of enlightenment: “Know thyself.” I’ve finally taken the first steps on the right path.
Sensory Processing Disorder isn’t something I talk much about. Or rather, I haven’t talked much about it because I didn’t understand it. I still don’t. I’ve just barely scratched the surface of what will prove to be yet another topic of lifelong study. The difference is that this time it’s not a research hobby. This time it’s the difference between the life I’ve led to now and the life I think I might want, the one I think everyone else already has.
When I read fiction, I tend to want to read something outside of my own experience, or if it is something I can identify with, I want it to be something that improves upon what I already live through. When Clark Kent leaves the farm to engage life head-on in Metropolis or when Luke Skywalker leaves the homestead to pursue his destiny against the Empire… both of these guys left home and used their abilities to do some good in the world. I left the country in search of a life, and mine’s been a kind of hell ever since. I don’t really X-Men for that reason, because when one of those mutants exclaims that nobody understands their power, and how that power makes their lives hell, they get Professor X to help them. I don’t have Professor X in my world. It’d make it easier if I did. Instead of teaching me to cope, he could just rewire my brain directly and make this end. When my senses destroy my ability to function, if there are other people around, I come across as the villain. I have few friends, limited employment possibilities, and almost zero understanding among even my own family members because I come across as quick-tempered and emotionally stunted. Try as I might, it’s gotten worse over the years, and the worse it gets, the harder it is to function. To the outside world, I’m an embittered, middle aged curmudgeon. Exactly the sort of person nobody wants to be near. Turns out, the truth is a little more complex than that.
A couple of years ago, I had never heard of Sensory Processing Disorder. The idea was suggested to me by my kid sister after she stayed with a friend on vacation. Her friend has a kid with autism, and whatever transpired, my sister made the connection. Until a few years ago, SPD wasn’t even a thing in the medical world. It’s not listed in the DSM-V, the holy grail of medical diagnosis, and so for that reason there is no insurance that will cover exploration or treatment. There are still some doctors, many of them psychologists, who do not believe there is a physical problem to identify, believing everything hinges on psychological traumas. It turns out that since the DSM-V was published, physical differences that explain SPD have been mapped on the brain. In the meantime, what little diagnosis and treatment there is for this sort of thing is largely relegated to kids and teens so they can learn to become functioning adults. That doesn’t leave much hope for those of us left behind, those who never knew there was a problem to combat.
SPD manifests a little bit differently in everyone who exhibits it. For me, there are some symptoms that I’ve always known that plague me, and there are others that I’m only just now recognizing as being part of this, having worked under the belief until now that some of these things were just personality traits. Of course, they are, but they are extreme end personality traits, the kind manifested by as the sane response of torture, not the “normal” traits of a highly-functioning human being.
It’s one thing to be able to treat a mental disorder. It’s something else entirely to treat one that’s created by a physical defect. Neuroplasticity can be a wonderful thing, but only if you know what’s going on in the first place, and only if you can find the tools to help you to take advantage of it. I’ve spent over forty years not knowing what was wrong, only that something was and the few would listen to me when I tried to explain that I wasn’t normal. And even then, once I got some people to recognize the problem, it was some inconvenience that I just had to work around, like having a pebble in your shoe or an itch you can’t scratch. The problem is infuriating enough. Having people tell you it’s all in your head just doubles down on the whole matter. And they’re not wrong. It IS all in my head, because that’s how my brain is incorrectly wired.
In some ways knowing that there is a physical problem is a giant relief. It paints a big target on something that I can identify and explain to other people. They may tolerate me for five minutes longer if I can explain SPD. Then again, they may not. More importantly than that, it’s something I can potentially attack head-on and do something about. I can now start working through life knowing that none of my behavioral issues are my fault. I now know I’m not really imagining things, that I really DO have superhearing capable of triggering migraines, especially in the lower frequency ranges. And it goes further than that. It’s why I’m photosensitive. People don’t understand why my house has blackout curtains all over the place, not just on windows, but also between rooms where there are no doors. They help to minimize the light and take the edge off the outside sounds. It’s why I sleep with a heavy blanket even in the dead of summer, because something about the weight of it provides some kind of calming effect that allows me a slim chance to sleep. It’s why I have insomnia, because my brain is misfiring in a thousand directions at once. It’s why a whiff of cigarette smoke or perfume is suffocating to me to the point of triggering an asthma attack. It’s why a momentary bit of anger manifests hours later as violent illness. It’s why I get defensive if somebody even so much as accidentally brushes up against me in an elevator. It’s why I’m uncomfortable in a room with more than two or three people, and why it’s super-distracting if any of them are on the phone, because I can hear both sides of those conversations and all of the background noise on the other side of that conversation as though I’m in that room with them regardless of how much I try to ignore them or tune them out. It might even be why I latch on to fictional characters so well, because it’s easier to live inside their heads than to live in mine. I might be grasping at straws on that last one, but hey, everything’s up for reassessment at this point. If perception defines your reality, it’s all up for grabs.
Try this exercise in futility. Sit in a chair and try to read. It doesn’t matter what it is, just read something. While you’re doing this, get someone to smack you in the back in the head. Repeatedly. Get them to vary how hard or soft they hit you, and where, and to change the interval so it’s anything but a regular tempo. Now get that person to randomly stick something in your ear or step on your toes or drop a spider on your back or whatever. Try to concentrate on any everyday task while that persists. See how long you can go before you’ve had enough and snap. And then try to imagine what it’s like to have that go on every single day without exception, all year long, every year for the rest of your life. You’d appear to the world at large to be an angry curmudgeon in short order too, wouldn’t you?
That’s why I write. Writing forces me to focus my mind one exactly one idea at a time, which is a rather herculean feat if you consider all of the other assaults on my perception. It’s why I listen to audio, because it allows me to focus more on something deliberate that I enjoy and can control rather than on ambient noise from a dog or a neighbor’s motorcycle or passing traffic or that high pitched whine coming from the computer monitor.
The good news is, at least now I understand, at least on some level, what’s wrong with me. Knowing is half the battle, so the saying goes.
Ironically, so far it really is red and blue lasers that have come to the rescue. CD players use red ones, and Blu-ray players are aptly named. Audio / visual stimulation and distraction. That’s fine and well sometimes, but sometimes you just need peace and quiet. The older I get, the more I cherish it, and the more elusive it seems to be. That’s why diagnosis at this point is so very important. So many little things that have stacked against me to make life miserable now have a reason to exist, and it turns out it’s only one thing. At long last, I can name my demon. Now I can attempt to control it. I wish I’d known many years ago, but that’s not something I can dwell on. When I was a kid, such things weren’t registered as part of an autism spectrum. Today, medical science is learning what it is. Yay for science! Now I can figure out at long last how to cope in a way that means something. The next step is to learn how to do that without falling back on this whole mess as some kind of crutch. I’m hoping the books I picked up on this topic can help as they claim. Time will tell. I guess I know what I’ll be doing this weekend.
The good news is, if it sounds like you or someone you know is going through the same sort of thing, now you’ve got something you can look into. I hope it helps.