[Update!! Those who want a tool similar to this can download one for free from http://autismandhealth.org/%5D
I have heard many complaints from autistic people and other people with disabilities about their struggles in communicating with healthcare professionals, etc.. I propose a simple questionnaire for professionals to use. These would be standard intake questions, and the answers would be put at the front of the patient/client’s chart.
If you like this idea, please take this quick online survey!!!
If I get enough positive feedback, I will try to make this tool become a reality. I don’t know how, but I will try. Please help me spread the word.
(If you have trouble wti the survey, you can also comment here on facebook: https://www.facebook.com/notes/open-discussion-on-autism/suggested-questionnaire-for-healthcare-and-related-professionals/789224341139804)
So, here’s the thing about living on the margins of disability with chronic fatigue and brain fog of uncertain etiology (i.e., unexplained symptoms).
Have you ever had a bad cold or hay-fever and you had to take a big honkin’ dose of Benadryl or Nyquil one of those other medicines that makes you all spacey and dopey? If you have, start with that (if you haven’t, I have no idea how to even begin explaining this to you. We might as well come from different planets).
Assuming you’ve had such an experience, think back on it. Think on the grogginess, the lethargy, the difficulty concentrating, the intense desire to just lie on the couch all day and not do anything that requires any physical or mental effort. You don’t feel up for much besides munching snacks and watching soap operas. Yeah, you can get up when you have to– you can, in fact, walk, talk, answer the phone, slouch your way into the kitchen for more snacks, check your email… but just barely, and not for any length of time. It’s not so much that it’s physically difficult to do any of these things, although you feel achy and clumsy and slow and would rather just lie still. It’s more that it takes serious and deliberate effort to remember what you’re doing, even while you’re doing it, and almost immediately afterwards the memory sinks away again into the soft mental blurriness of not-really-thinking about anything. It’s so very much easier not to do anything at all.
Imagine feeling that way most of the time. For at least part of every day, if not all day. Imagine fighting that feeling in order to get up every morning. Feeling that way as you try to make appointments, pay your bills, answer your emails, fix and eat meals and clean up afterwards, drive to work, do work, run errands, come up with the list of errands that need running in the first place… And on and on and on. Everything you can think of, you do while feeling this way, at least some of the time. Phone conversations with Mom. Putting away groceries. Deciding what to wear. Choosing whether or not to accept a friend’s invitation to dinner.
Imagine this. And then forget it, because what I’ve described so far only just touches lightly on what it is like to actually LIVE this way.
It says nothing about the guilt and dismay and despair you still have, 15 years after the fact, over losing yet another good friendship because, for the better part of a year, you just plain couldn’t muster whatever it takes to pick up the phone and call someone, anyone. Or answer a simple email. You tried to explain what depression means, how it eats away entire chunks of yourself and everything in your life, but few people can understand this unless they’ve experienced it themselves. It sounds unreal, even to you, even now. You wonder why you couldn’t have been a better person, why you couldn’t remember or focus or make the effort or drag yourself out of moping or whatever it was to spend a stupid five minutes making sure that someone else knew you valued them as a person. How can you explain, even to yourself, that even when you thought of doing so, the thought faded away mere moments later? That in some strange way you were barely aware of your own existence, let alone theirs?
And how do you square that with fact that, since no one stuck you in a hospital or an institution during that time, you must have been maintaining some semblance of a normal life all those months? You ate, you bathed, you dressed, you laughed, you went for walks, you went to work even! You appeared to be a fully functional person. Perhaps a somewhat lazy and irresponsible person, sure, but a real person all the same. You even felt normal most of the time, or at least normal for you. When huge chunks of your own life and self are missing from your awareness, you don’t really notice their absence most of the time.
You go about your daily business until something brushes a spider-web thread that jostles a memory, and then the bottom drops out of your world. The bill comes in the mail that says “3 months overdue!” or you get another phone message from the friend you can’t seem to keep in touch with, or a photograph slips from between the pages of a book and reminds you of an entire crucial section of your childhood that has somehow gone un-thought-of for ages. Or worse yet, that photograph has been sitting on your desk all along, and your eyes have passed over it time and again without registering the meaning behind what they were seeing. It’s a dizzying, jarring feeling when you realize these kinds of things, when you suddenly notice that time has been passing without your being aware of it. It doesn’t seem quite possible, no matter how many times you experience it.
But you suffer from a curious sort of out-of-sight-out-of-mind syndrome taken to the extreme, as though your mind were a pool of murky water and the vast majority of its contents visible to you only when they bubble up to the surface seemingly of their own will and very nearly at random. You can hold something at the surface to look at for a while, but the moment you let it out of your grasp it may sink again.
Enough stuff stays on the surface about your current life that you can pass for very competent in certain areas– work, school, a given hobby, a particular social group. The problem is that you can turn your attention from one of these things for what seems like mere moments, and an entire continent’s worth of material can sink, Atlantis-like, out of sight, so that you are horrified to rediscover, some weeks or months or even years later, that a major section of your life has simply vanished from your view, and all the important structures you had so carefully built and maintained have crumbled to driftwood. You’ve forgotten to follow up with that colleague you were so excited to meet, and surely that project you wanted to work on with them is long since finished. You’ve forgotten the name of the manager you worked with at the time, or even when you worked there, and most of the other details you’d need to put that job on a resume. And it’s probably too late to ask. No one you know even works there anymore, or if they do, they’ll be baffled to hear from you after such a long silence. How could you have lost track of something that once meant so much to you? You began to focus on a different area of your life, and in doing so, lost an entire other world.
Or it can be as simple as putting that bill down on your desk to go find your checkbook so you can pay it. Along the way something distracts you, and by the time you come back to the desk (without your checkbook, I might add), you’ve forgotten the bill’s existence, even though it’s sitting Right There, and eventually you’ll casually set another paper on top of it, or move it into the top drawer “momentarily” so you can use the space for something else, or even stick it to the fridge door with a magnet, where you will cease to see it because your mind glosses over unnecessary details most of the time, and when you go to get something out of a fridge, papers stuck to the door are surely unnecessary details. And then you get a notice that the bill is “3 months overdue!!” (how did that happen?!) and you feel like a lousy and useless person.
Or take the fridge itself. You bought a bag of peaches because you were excited to try a new recipe for some dessert. By the time you got home from the market, it was too late to cook, or you were tired, and you set the peaches in the fridge telling yourself you’ll cook them tomorrow. Only somehow tomorrow came and went, and you forgot about the peaches. And the next day you find a bag of peaches in the fridge, what a surprise! Oh yeah, that recipe! Let’s cook. But you look closer and the peaches have rotted and wilted away and you realize that somehow the “two days” since you bought them must have been closer to two weeks. You’ll have to throw them away and start over.
And after the fourth, or fifth, or is the fifteenth time that something like this happens, you wonder if you should just stop wasting food and money and eat nothing but canned soup and frozen microwaveable dinners for the rest of your life, despite hating the unhealthiness and the waste and all the packaging. You’ve tried all the little life-hacks. You left the recipe book on the kitchen table, where you’d be sure to see it, open to the page you needed. You stuck a note on the fridge saying “We have: PEACHES!!!” Sometimes these measures do work. Often they do not.
Why bother with anything? You can’t even invite someone over to share the peach dessert you finally cooked, because now your kitchen looks like it was hit by a tornado and smells like something died in it. Sure, you’re a normal, sane, responsible, decent adult person… who just happens to leave the dishes sitting in the sink for an entire week before washing them? Yeah, like anyone is really going to believe that. Would you? And it’s going to take three times as long to clean now as it would have if you’d scrubbed up right after cooking, and you know that, so why didn’t you just…?
Your life is a constant litany of “Why couldn’t you just…?” and “Why didn’t you just…?” and “Have you tried…?” and “Maybe you can…” Some from yourself, some from other people. The ones from yourself make you feel guilty and depressed. The ones from other people make you angry, defensive, and bitter. Sometimes you have tried. Sometimes you can’t muster the energy to try. Sometimes you mean to try, and forget. Either way, the fault always seems to lie, somehow, with you.
And inevitably, the vast majority of people in your life will come to the conclusion that you are lazy, or inconsiderate, or both. Never mind having friends over, do you have any idea how hard it is to find someone who is willing to LIVE with someone who regularly forgets to do the dishes? Who sits down to rest for a few minutes after eating and doesn’t even realize that she didn’t clear the table until it’s time for the next meal? Assuming you remember that there is a next meal to be had.
There are, of course, those days when you wake up with a bit of bounce in your step and do All The Dishes! and scrub out the sink and even mop the floor, and then suddenly it’s gotten to be 4 PM and you haven’t yet eaten anything or made any of the phone calls you needed to make and now you feel woozy because you didn’t eat and you have to go lie down for the rest of the day and probably won’t feel well tomorrow, either.
Then there are those rare days, or even weeks, where you’ve somehow gotten into a nice little groove– waking up, late breakfast, clean up after, run an errand or two, nap, check email, get an evening meal, relax with something fun to do, and you think “Oh, this isn’t all that bad after all. Sure I’m tired a lot and have to take things relatively easy, but it’s not unmanageable if I just keep myself on track. What a baby I was being all along! Why am I such a complainer?” and so on. And you start feeling marginally guilty about considering yourself disabled at all.
(After all, if there were something really, properly wrong with you, they’d have found it by now, wouldn’t they? All those specialists and blood tests and brain scans. And you probably wouldn’t have these periods of near-normality. Maybe you really are just lazy after all. At other times, of course, you feel even more crippled than your peers who have diagnostic labels. You know wheelchair users and cancer patients and people with severe epilepsy who do more in a day than you do. Lots more. How do they manage? Are they just stronger, better, more determined people than you? Or is there really and truly something wrong with you? There must be. But for now, you’re doing well, so why worry about it?)
Eventually, of course, there will be a scratch in the CD, a nail in the road, a missing step, and the whole thing will come crashing down around you, and you may not even notice it happening at the time. A skipped meal, a forgotten errand, staying up too late one night chatting with friends so that you oversleep the next morning, a change in work schedule, just doing a little too much in one day and not being able to do quite enough the next… and the whole system simply unravels around you.
And then one day you’re looking through the 27 million unread messages in your inbox and you spy the email from a friend you meant to respond to right away, only that email was from… six months ago. And there’s a tab open in your browser for an event you wanted to go to, and you looked at it every day for a few days and then it got lost in the shuffle and now when you find it again the event was… also six months ago. How did you come to this point yet again? What happened? Where did the time go? How did these thoughts spend so long underwater?
I can make to-do lists and charts and calendars and set my bills to pay automatically (yay technology!), but there’s no way to write down everything that needs to be remembered on a regular basis, and if I did manage to write it all down, I’d never have time to read it. How can I know what things I’ll forget, and when? I can’t. So what should I do? Maintain an immense spreadsheet of every friend, relative, and acquaintance, and when I last spoke to them? Not a bad idea, actually. I’ll get around to trying it soon, or at least starting it. I’ll lose track a quarter of the way into making it, I’m sure. Or make it and use it for a while before I miss logging one call and slowly stop using it all together, and it will become one more forgotten file taking up space in my google account, until by the time I ever find it again it will be so hopelessly out of date that I’ll have to start all over.
Do I sound defeatist? I hope not. I don’t feel defeatist or defeated, actually. Over the years, tips and tricks and practicing mindfulness have gotten me to the point where I can usually manage the most important stuff most of the time, and that’s a darn good start, really. And I have friends who understand, and/or struggle with similar issues themselves, and that makes a world of difference to my ability to accept myself. I still lose a lot, but not everything. I may not be able to do much, or do things very often, compared to most people, but I do greatly enjoy the things I can do, whenever I can do them.
I have my moments. Writing this was one of them. More of an hour and a half than a moment, really. And here it’s 2:30 PM and I washed half the dishes and scrubbed the sink but I still haven’t had breakfast… I think I’ll go do that now. Writing this helped. It got the words out of my head and into something that will remember them for me, something that can reach out and touch other people’s lives. I don’t think I said everything I meant to say, but I came pretty close. It makes me feel more real when I can do this kind of thing. More worthwhile as a person. And more hopeful, too, because it’s a reminder that I CAN do things, sometimes even amazing things, and do them well. Just not very often.
[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.
This blog is where I write primarily about disability rights, both from my job and from my own experiences as a person with chronic illness.
I have a BS in psychology, with a concentration in cognitive and neuro psych. Since graduation, I have worked as a psychology research assistant, tutor, and as a caregiver for children with assorted developmental disabilities. This last is my true passion, and this blog is written largely on behalf of the wonderful children and young adults who are my clients.
A note: as they say, “the names have been changed, but the stories are real.” I have altered many details in my posts to conceal the identity of my clients as much as possible. And dialogue is generally not exact, as my memory is, well, memory. However, I have not made any of these stories up. These are all things that happened, both the good and the bad, the heartbreaking and the incredible. Such is life, particularly where children are invovled.