[Here’s a lightly edited post from my personal blog, about me. I didn’t actually realize that I’d never managed to post it here before. Today is a “clear” day, the opposite of a day with brain fog, and my own record of my own experience seems foreign to me, but I know intellectually how often this post describes my life.]
Note: I’m sorry; this post got epically long. I spent a couple hours having bits of it drift around loosely in my mind when I was too blurry to do anything with them, then sat down as soon as the fog cleared and wrote for 90 minutes straight. This is the result, and I hope it doesn’t inspire an immediate TL:DR reaction in everyone!
Sometimes I dread the prospect of trying to hold down a full-time job. And lately I’ve been debating whether graduate school is really an option for me either. No “I’m sure you can do it” platitudes here, please, unless you’re someone who has known me in person long enough to make an honest judgment about it—I’m not looking for a morale boost here, just thinking out loud.
The problem is the incredible shortage of what I call “functional time” in my days. This has been an issue since my mid-teens, and a critical issue since the early 2000’s when I was working at the library. Last time I wrote about my battle with depression (leaving aside the question of whether that’s the correct or only diagnosis– I’ve also been known to refer to it as everything from Not-Exactly-Fibromyalgia to corruption of my farandolae by echthroi,), I spoke about its physical and emotional effects, but didn’t go much into how it changes my mental functioning.
The formal term for what I experience, I’ve learned, is “brain fog.” Granted, I’m never been good at applying my mind to things that bother me—like many people who suffer from clinical anxiety, I’ve spent much of my life since early childhood essentially shoving things under my mental carpet and then standing firmly on said carpet going “what thing under the carpet? I don’t know anything about anything under the carpet” with all the conviction of a dog who wants to assure you he didn’t steal that piece of steak off the counter. Trying to make myself drag these things out into the light and work with them is a task akin to building stable structures out of wet bars of soap.
But that’s not really what I’m talking about here, though I suspect it plays into my executive functioning struggles more often than I’d like to admit. No, brain fog proper is like being under mild sedation, or on one of those old-fashioned anti-congestion medications that leave you feeling as though you’re stoned without the benefits. The inability to intentionally process things is terrifying, especially to someone as intellectual as I am.
It’s hard to show an outside observer just how devastating this is. After all, I function more-or-less appropriately in daily life, and my lapses are written off as having “spaced” on something, on mere absentmindedness, on carelessness or lack of foresight. Sometimes I deliberately exaggerate certain quirks in order to pass myself off as eccentric rather than struggling. Sometimes I think about the term “absent-minded” and find it terrifyingly, tragically apt. I /hate/ when my mind is absent. My mind is what makes me me. Having brain fog feels literally as though a part of myself were missing.
I am reminded of a video we watched in a neuropsych class, an interview with a man with fairly advanced Alzheimer’s disease. He didn’t act like someone who was ill, or having mental problems. He was relaxed, at ease. He joked about his tendency to forget where he put his keys, or the names of his friends, but passed these off as minor difficulties. Only carefully targeted questions revealed the depth of his impairment—he didn’t know the day, month, or year (though he acted as though most people didn’t normally keep track of such things), and couldn’t recall a snippet of conversation from moments before. It was shocking and unnerving to watch how easily he was able to cover the evidence of so profound a dysfunction. Disturbing, too, was the inability to tell whether or not he believed his own cover story.
On the surface of it, my struggle barely shows. Through years of diligence, luck, and trying numerous strategies, I no longer miss too many appointments, and generally don’t show up more than 10 minutes late for work. I’ve learned to take my daily meds, though Dlarg help me if I have to take medications more than once a day, or within a relatively narrow window each day (“before bed” for me is easily a 5-hour span of time). I don’t often lose my thread in a conversation completely, though more and more, these days, I have trouble finding the words I’m looking for—words that I know, and know I know. Often, too, I let my attention wander briefly and fail to process what someone has said to me, and must ask them to repeat it.
I have trouble bringing up facts I know or things I’ve read—I have only the vague sense that there is knowledge that I should have ready access to. And oddly enough, I usually can pull up that access when I absolutely have to—for tests, for example—but not always at will. I feel as though my mind is a murky lake in which I have to wait for items to surface on their own time. I can fish about in the water, but my odds of coming up with what I need to are minimal. When I do recall facts, they are often flapping around unattached—I can’t remember where I learned them (this is, mind you, a fairly common failing in healthy and typical humans as well). It’s more bothersome when experiences of my own come loose from their context—I’ve eaten this food before, but where? Played this board game, but with whom? When did I start listening to this band? Was this conversation I recall real or in a dream?
Biographical information is something I’ve always struggled with, and especially with attaching any sense of timing to it. On a bad day, I find myself at a loss to answer questions like “when did I hold that job?” to within any closer than a 5 year span. When did I last eat? Talk to my mother? File my taxes? Pay my college account bill? Go to the zoo? My answers are on the wrong scale (right now the most specific I can get is, respectively: mid-afternoon today; sometime in the last 2 months; not this past year but almost certainly the year before that, though I don’t recall if I did state or just federal; sometime over the weekend and 3 payment cycles overdue; and, sometime in the past year but I have no idea when). And this is when I’m pretty clear-headed. For more depth I go looking though phone records, boxes of poorly sorted financial papers, ticket stubs or notes on my calendar or in my journaling. For that matter, something tells me I’ve written entries like this before, but I have no idea when or to what extent.
This is the point at which people start to say things that begin with “why don’t you just…” I’m not entirely averse to these suggestions—after all, I am a big fan of coping strategies and assistive technology. But I need you to understand at the outset that there’s no guarantee that what works for you, or for most people, is a method I can use. Even simple tools often presuppose a typically functioning mind in order for them to be useful, the same way they presuppose a person with thumbs. And sometimes the suggested solution is on the wrong scale for the problem.
Why don’t I just chronicle important life events? Because writing is exhausting, filing my writing is exhausting, remembering something long enough to write it is not always feasible, especially given the time constraints that brain fog puts on my days…. and knowing how and when to reread my writing is another puzzle altogether. I take photos, lots of them, but have no way to index them all, and they don’t always remind me of what I want to know. And besides—how do you know what things will be important in the future? The casual conversation, the chance meeting… I don’t know exactly when my fiance and I started dating, because I didn’t keep track of it at the time. I can pin our anniversary down to within about a month, but that’s all, and I have to reference job paperwork to get the right year. I have so little useable time… and when I’m at my best, I often spend it doing things like writing this entry, because I feel it’s important. The flip side is that taking the time to write this means falling behind on everything else.
Why don’t I set alarms, use a PDA or a phone, have alerts on my computer? I’ve found, oddly, that electronic reminders don’t work for me. I have to remember to set them, make sure to be near the electronic in question at the right time to get the alert and do something about it, not turn off the alert with the intention of doing the task and then forget all about it seconds later, or start and get distracted from the task partway through, learn how to use electronics (not easy for me) and develop a habit of doing so (even harder), and afford them in the first place. I know from experience just how likely this system is to end up failing at one of those points.
And so much of what I need to remember isn’t discretely schedulable enough for that—at least, not the way I live, with constantly adjusting time-tables, flexible work hours, a bedtime that changes drastically depending on how well I feel, etc. Or if it’s something I have to schedule well in advance like a doctor’s appointment or jury duty, I’d need not just one alarm but a series of reminders leading up to the day itself so I don’t make other plans, forget to arrange transportation until the last minute, etc. Those reminders themselves have to appear when I’m clear-headed enough to make use of them.
A paper calendar works better for me, because it lets me see multiple days at a time and try to form a picture of them in my head, of how they are structured. I fill in a lot of my calendar after the fact, jotting notes on what I actually did versus what I had planned, meds I took, symptoms, and so on. It’s far from providing me with a complete record, but it gives me enough of a skeleton that I can play archaeologist to my own past and piece together most of what I’ve been through.
Sticky notes, notes on the fridge or the door, are useless to me. There is, again, the trouble of remembering and having the spoons to put them up in the first place—the entire process can easily drop out of my head while I search for a pen—and then the need to be attentive enough to process them when I come across them. There’s that absence of mind (or mindfulness) again—I frequently, especially when tired, walk past major things without noticing them at all. Small yellow pieces of paper have no chance of penetrating the fog and actually registering with me as something to think about.
I do, in fact, have methods that work, but I’m hard-pressed to say what they actually are. Deliberate mindfulness is part of it—trying to spend more time mentally present rather than lost in thought. Forming good habits works well, too, though it takes time. Sometimes I can link a new task to an old habit—something that needs doing daily might get placed with my meds where I am most likely to see (and process) it every day, for example. Part of it is minimizing my commitments, prioritizing carefully, and not kicking myself too incredibly hard over the bill or three that I inevitably forget to pay on time. Sometimes I recruit friends to help me remember to do things like eat regularly.
Fog, blur, murky water, tenuous threads. Of these things my experiences are woven, carefully balanced, fragile things gathered in trembling hands, diggings in dark earth for signs of life, slippery thought-fish darting between my fingers—there, and gone, and gifted once again, like seasons that come and go, like dark and light. I cling, let go, and my world is swept away.
And this, because it makes my heart sing.
I rarely write about my kids here, despite parenting obviously being one of the things I definitely care about. Part of this is because that in advocating for myself as an adult autistic, I am trying to urge parents to treat their autistic children in a more accepting manner. So it’s sort of me investing in their future by advocating for all autistics, adults and children alike. Another part of why I don’t talk too much about my kids is that I really don’t want to ignore their right to privacy. I do not feel that I own my children. I feel like parenting them is a privilege and a huge responsibility, but it is not a sign of ownership. I really feel fearful about parenting attitudes that treat kids as property and things to be controlled rather than individual human beings to be respected and loved. I care about…
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[an essay x-posted from my personal blog]
I’m an odd sort of chameleon. I don’t fit in well with “normal” people, particularly not “normal Americans,” and while I can fake it much better now than I could as a child or teen, I find it exhausting to do so for more than a few hours at a time, and depending on my mood, I either do so purely to amuse myself or I simply don’t bother at all. But I can fit in with many other crowds, even some that I’m really not sure I belong to at all. As much as I mock the Western cultural obsession with Individuality and Self and Identity, I admit to having my own passion for eccentricity, or at least the appearance thereof.
Early in life, I was aware that my peers considered me “weird,” and that adults used the more polite term “unique” about me to mean essentially the same thing. I was not always weird in good ways, either– I was a self-focused, head-in-the-clouds, wool-gathering dreamer, an oddball who was largely unaware of most of the rest of the world and had little interest in understanding anything outside of fantasy and science fiction. Part of this was thanks to my mother, herself very much and iconoclast and idealist, who brought me up in a house with many books but almost no mass media– and by that I mean TV, radio, magazines, newspapers, brand-name anything, packages with ads on them– really, an environment almost completely isolated from current American culture. I could easily have picked such things up from peers and other sources, I suppose, but it never really occurred to me to want to do so. Through at least middle school, I didn’t really know who the Smurfs were, who was President or why it mattered, what “cable TV” entailed, that racism still existed outside history books, or what Froot Loops cereal tasted like.
But I digress (another thing I’ve done well my entire life). Being a social outcast was painful, but I also quickly made my strangeness a matter of personal pride. By the time I was a teenager, I had a major chip on my shoulder about being Different. I went through phases that were probably typical then and are even more so now– I practiced pagan “magic” (with my New Age mother’s full approval, which made it less a rebellion for me than for most teens), wore lots of black (granted, I worked stage crew at my high school, so half the time this was required anyway) and called myself a Goth (by which I meant I burned black candles as well. If I’d had the money to spend, I probably also would have shopped at “Hot Topic,” which was still a relatively small chain that mostly sold black clothing and pentagram necklaces). I handled my extreme anxiety and probably early stages of bipolar disorder by deciding I had multiple personalities and dividing aspects of my life up among various “characters” in my mind (an idea I got from a trashy and certainly faked biography of a girl whose mind shattered due to abuse by a satanic cult). And while most traces of these phases are far behind me, I have continued over the years to deliberately cultivate eclectic interests, hobbies, styles of self-expression, and even labels for who and what I am. And I have mourned the mainstreaming of the identities Goth and especially Geek, which now mean much less selectively strange crowds than they used to. I have always had a streak of snobbery in me, no matter what groups I selected to frequent.
I never got over the need to be Different, but part of me began to worry that I was faking it to some extent. I defined myself early on as bisexual, which I have since revised to pansexual/sapiosexual (when I bother to define my sexuality at all), but the truth is that I have dated only men and had most of my sexual experiences with men as well. Why do I find it impossible, then, to consider that I might be simply heterosexual? “Too limiting,” I tell myself, but while it’s true that I’ve found a number of women attractive over the years, I can’t help wondering if my unwillingness to call myself “straight” comes down more simply to a prejudice against belonging to the majority in any way that I don’t have to. Does being straight just lack the outcast chic to which I’m so attached? (“Some of my best friends are straight!” says a mocking voice in the back of my mind). And yet here I am sometimes rolling my eyes at other people who are so focused on chasing down, or inventing, the exact and complex terms that define how they feel about their gender and sexual identity that I get tongue-tied in a vat of alphabet soup acronyms and unpronounceable preferred personal precarious gender pronouns and start to wonder why we can’t all just call ourselves Human Beings and leave it at that.
(Aside: it’s a fine line to walk. I’m all for calling people by words that don’t hurt them, but having to learn new vocabularies on a regular basis makes me keenly aware of what a friend refers to as “the euphemism treadmill.” Words have power, but changing terminology doesn’t change peoples’ minds, it just allows us to temporarily escape the vast amounts of negative baggage that certain words have accumulated in favor of ones that are not yet so sullied. I try to call people by the words they prefer because respecting people’s preferences shows just that– respect– not because I actually believe, usually, that one word has some inherent advantage over another or is in any way a more accurate description.)
But I think that ultimately I aligned myself so strongly with the Queer community, and other communities that followed, primarily because I felt that these were people who understood– understood what it was like to be Different, and Outside, and Looked Down On. They understood what it was like to be me, and so that must mean that I was one of them.
And here is where I run into questioning myself again. Because I keep adding myself to groups for exactly that reason– because they seem to be “different” like me, and I assume that therefore I am, like them, a queer person, a geek, a demi-goth, a Jew (ethnicity, not religion, but honestly I’m not much of a cultural Jew either), kinky (somewhat), a person with disabilities, a non-neurotypical, an academic, an artist, a bookworm, a secular humanist, an atheist, an activist… Some of these identities seem fairly frivolous; others are deeply defining. But they all have something else in common besides my adherence to them; at some point, for each of them, I’ve felt like a fraud. I wonder if I only define myself as such because my friends do. I wonder if I take on the trappings of this identity to fit in with whatever crowd I currently spend time with. I worry that I’m not just mimicking someone else’s experience, but actually appropriating it. This isn’t always a big deal. Who cares if I put on a beret and start calling myself an artiste with the accent on the second syllable? No one, or at least no one should. But when I label myself as part of, or even associated with, a marginalized group, that’s when I start getting uncomfortable. Have I been mocked and othered in my life? Sure. I’ll bet you most people have, at some point. Do I face the kind of prejudice others in my self-identified demographic do? Generally not. Sure, I’ve gotten the odd crack about how I must be good with money (I’m not), a few nasty faces at my stated sexual preferences (but never from anyone whose opinion I cared about), a lot of hurtful remarks about disabilities I have as well as those I don’t…. BUT. I can pass for normal. I can hide any of these identities when they don’t work for me. I’ve picked up autistic-style flapping when happy or excited or anxious the same way I’d pick up any other slang from friends I hang out with, and I’m good enough at it that often autistic people think I’m on the spectrum (which I take as a compliment). I like being included in autistic circles; I feel good there. But I can also refrain from “acting autistic” just as easily, and most of the time I deliberately choose not to, to stim in public and without shame or self-consciousness, in part as my own form of protest against the fact that these things are not always socially acceptable (and they should be). But I might choose not do so in a job interview, and that gives me a privilege I know not all my neuro-atypical friends have. I often get overwhelmed by crowds and noises, but I can pass that off easily enough as social anxiety or something else relatively mainstream, and it isn’t constant enough to really interfere with my life. Heck, I even managed to work at a mall for a few years. My executive functioning skills are lousy, but I can pass those deficits off as quirks, and I’ve never truly been made to feel ashamed or defective because of them. When I recently found myself at Home Depot accidentally wearing a pair of fuzzy blue house slippers, I was primarily amused at myself, and a little bit pleased that I’m already showing signs of becoming a Mad Scientist or Absentminded Professor (archetypes I’ve admired since early childhood. If it weren’t for my allergies, I’d also be looking forward to becoming a Crazy Cat Lady too). I skate along being eccentric without having to worry, or at least not too much, about being so functionally impaired that I do dangerous things like leaving the stove on all night and burning down the house.
Is it right for me to enjoy the advantages of these identities without experiencing their disadvantages? To stand in the margins without being marginalized? Is my concern about this itself merely an intellectually masturbatory expression of something analogous to White Guilt? (for which I have little patience. I do believe that being born racially and culturally privileged gives me something of a moral obligation to try to share my advantages with others who lack them, but the idea of beating myself up over a roll of life’s situational dice strikes me as outright absurd). Or is my choice to stand with those I can relate to primarily a good thing? A friend, who blogs at thethirdglance.wordpress.com, came out to me very early in our friendship as autistic, despite hiding that identity from almost all her classmates, co-workers, and even family members. I asked her, much later, why she was willing to tell me so easily when she’s so reluctant to tell others. “I don’t know,” she said, “I just knew right away that you were someone I could trust.” So there’s a positive thing. I think that I manage to be a good member of the communities I join, even when I don’t share all the experiences of the other members. I think I am aware enough of my position as a partial outsider among other outsiders to listen to the perspectives of those who are more deeply entrenched in the experience. And I think that, just as I benefit from feeling at home among others who live in mainstream society’s margins, I help others to feel at home with and accepted by me. This essay wound up going differently than I expected it to, but somehow I think I said the things that need saying. Here’s hoping I still feel that way when I reread it later. 🙂