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.
I am a disability-positive person. I see beauty in human diversity, and believe there is great value in the varieties of body and mind and the great wealth of experiences that ensue from those differences. That being said, I don’t always see disability through rose-colored glasses.
Depression, like chronic pain, like most chronic illness, is one of those disabilities that’s hard to live with no matter how well it is accommodated. In fact, depression is not only a chronic illness, but also a form of chronic pain. The weight that sits in my chest may be metaphorical, but the pain is real, and at times even physical.
Yes, it would be nice if I didn’t face stigma and misunderstanding, but in my own life, those problems have been relatively minor. At best, I might have been diagnosed and started medication a few years earlier. No one has ever really been cruel to me on account of my mental illness, and no one has ever taken my freedom or any other of my rights away because of it. In this, I know I am lucky.My battles are not the same ones that many disabled people face.
Depression makes it hard for me to accomplish things, have ambition, follow my dreams. It means I’m often years behind on things like routine doctor’s visits, and other things that adults are supposed to do regularly. It’s the reason I only have a B.S. at this point, not a PhD. It’s why I work part time for barely above minimum wage, and have always worked for far less than I am worth. I am lucky– very lucky!– that I have always had other resources to fall back on, and am not living in poverty. I am lucky I have not had to file for disability status– many of us with mental illness and chronic fatigue fall into the cracks in the system because we lack the energy to even do things like file the paperwork for the help we need.
But even if money arrived on a silver platter and doctor’s visits came right to my door, at least to some extent I would still be suffering, and not in a way that anyone could do anything to change. I do suffer– SUFFER– from depression. I use that terminology very deliberately. Depression hurts. Chronic fatigue hurts. They hurt most of the time. Sometimes they hurt almost unbearably. They grind me down, hold me down, wear me down. They make it a struggle to get up in the morning, to eat, to breathe– never mind things like keeping friends and finishing college. There are times– so many times– when all I can do is curl myself into a little ball around the pain and whimper. I lose a lot of time that way.
What to do? More medication? Different medication? Maybe. Each comes with its own side effects and risks, and not always obvious ones, either. A myriad of other suggestions– from polite to aggressive– beseige me constantly. They range from utter nonsense to pure common sense, from free and easy to massively expensive in money or time/energy. The one thing most of them have in common is that I lack the energy to even attempt them. At least here I’m in a holding pattern, treading water– maybe not doing well, but functioning at a level I can survive with. And that’s no small thing. I do fear losing that balance. As hard as I find life right now, I am living and breathing and moving forward. I may not be doing well, but I don’t think I could stand to be doing any worse.
All this being said, I live well with depression– really! A lot of it is luck– like I mentioned, I’ve never truly struggled financially, I have plenty of good friends, my life has been remarkably free of major tragedies and other situational causes for depression– and (believe it or not), my personality is a pretty happy one. It’s an odd combination, actually– I’m a fairly cheerful, optimistic, fun-loving, easy-laughing, moderately-positive-thinking, stop-and-smell-the-roses kind of person… who just happens to spend a lot of time in intense emotional pain over absolutely nothing at all. Depression is a really weird thing when you get right down to it. It made far more sense when I was an angsty teenager with no romantic prospects– being miserable, cynical, and bitter meshes well with clinical depression. At that point, I had no way to know I was suffering from an illness; it made sense to be unhappy. But having trouble getting up in the morning when you have a pretty awesome life is harder to understand, even when you’re the one experiencing it.
A doctor recently gave me one of those depression rating scales to fill out. Then, after talking to me, she said “You know, you have a pretty great attitude for someone who scored this high on the depression scale!” I laughed and told her “I’ve had a lot of practice.” And it’s true that the mental tools I’ve developed to help me cope make a huge difference. They don’t lessen the pain, but they allow me to keep going in spite of it. Many of them are simple practical tips– get enough sleep, eat every day, don’t make any major decision while feeling depressed– and others are more like mantras, things I wouldn’t accept anyone else saying to me but I need to hear– like “remember, your brain lies to you,” and “it’s only pain– it can’t actually kill you,” and “it won’t hurt any less if you give up and collapse, so just grit your teeth and keep going.” I suspect everyone’s the little phrases are different. Some of mine are pretty weird, too. But you tell yourself whatever you have to in order to keep going.
My body hurts. I’m tired, and tired of being in pain. I didn’t get nearly as much done today as I wanted to, although I did accomplish a fair amount. I’m not looking forward to going to bed because I know I’ll be even more tired in the morning. And I meant to spend this time catching up on writing book reviews, but oh well, I suppose I needed to write this too. I wish I had more time– no, more energy– energy in a day: the time is there, but I can’t use it.
And I can’t think of how to end this, so….
(So, it would have been nice if I could have written this for the Autism Positivity flash blog, or Blogging Against Disablism Day. But life doesn’t always work out that neatly, and I only saw the TED talk two days ago and the words to respond didn’t come to me until now. I’m tagging it for those days anyway, even if it is a week late)
So, for all of you out there wondering what we should “do” about autism, STOP. Just stop right there.
Because you shouldn’t DO anything ABOUT autism– you should do something FOR autistic PEOPLE. And what you should do first and foremost is listen.
They will tell you, in words and text and pictures, that they don’t want to be fixed, don’t need to be cured, and above all, fear being prevented.
Those who struggle to speak have thoughts and feelings and lives every bit as valid as your own. They think things like:
We are not lost.
We are not missing.
We are not a mystery.
We are not broken.
We are not incomplete.
We are not worth less than any other person.
Don’t push us away.
Don’t try to get rid of us.
Don’t try to change who we are.
If you still our hands, you stifle our voices.
If you emprison our eyes, you oppress our hearts.
If you teach us self-hatred, you keep us from our dreams.
If you try to make us just like you, you will lose us twice over, for you will destroy the person we truly are in search of a person we will never be.
…I had to leave a party today– a calm one– after less than an hour. The sound of Fifteen Voices in one house– talking, laughing– hurt me so much I felt physically ill…
…Earlier in the day, I went to a classical concert, and sketched the images that came to me with the music…
…I wouldn’t know fashionable if it bit me on the ankle…
…I am moved to tears by the beauty of car tailights…
…my hands flicker in joy at the feel of pine needles, of sea-smoothed stones, of velvet and fringes and tinsel and silk…
…I take words too literally, sometimes. I have to ask, often, if someone is joking…
…I seek out foods with interesting textures…
…I collect shiny bits of paper– shiny bits of anything, really…
…I hate shopping malls with a passion. Too much to see, hear, smell, too much, TOO MUCH TOOMUCHTOOMUCH…
…”Weirdo,” they called me in grade school. “Oddball. Freak.” The adults were more polite. “You’re so unique,” they’d say to me, “so interesting“…
In the video (and many others like it) the doctor describes a nonverbal boy who cries and screams and rocks and flails in frustration, even hitting his head, even hurting himself. Her voice is resonant with shock at the tragedy. Another boy, she says, “shuts down” when he is overwhelmed. Sure, he’s smart, but he struggles with socializing, with Making Eye Contact (the Holy Grail of Western Civilized Behavior). Her voice is rich with sympathy, with pity. She dreams of something to make these boys Normal, to make them Speak and Look and Act like herself and others like her. Maybe, she says, with coaching, the shy, withdrawn, smart boy could even… date! The audience laughs kindly, applauds politely. How nice that would be, they think.
Did the doctor (and so many others like her) ever ask these boys if they want to be normal? Whether or not they are unhappy, and if so, why?
When she talks of searching anxiously for the genes that caused their existence, does she think about how this might make them feel? (How eager we are not to have any more like YOU!)
Perhaps she knows that these boys have strengths and joys, too, but it would never occur to her that their weaknesses and struggles and flaws are every bit as human as her own, every bit as acceptable, every bit as undeserving of shame. Who among us is perfect, after all? Such a person would be truly inhuman.
I have more news for her, and for others like her.
Those people she talks about, those AFFLICTED with autism spectrum disorders… they learn and grow and laugh and love. They go to school, to college– often!– and even to grad school. They hold jobs, many of them. They fall in love, get married, have children. Yes, even those who bang their heads and flap their hands, those who didn’t speak until years after their peers. Delay does not mean inability. Atypicality is not synonymous with failure. Doing things in an unusual order or unfamiliar way doesn’t mean you can’t do them at all.
Those of us who struggle with “normal” socializing — junior high’s freaks and geeks– make deep, solid, long-lasting friendships, often with others like us. Sometimes we oddballs band together and do amazing things. You’ll find us in the chess club, and the theater groups, in musical ensembles and computer programming camps. We hang out with other minorities, with the outcasts and fat kids and bookworms and cripples and queers and those who live between cultures and feel out of place. We find strength in our struggles. We draw insight from our outsider perspective. We are often kindhearted, as we know what it feels like when others are cruel.
And many of us love our lives. Those of us who rock and wail and flee from crowds and dig our nails into our hands until we draw blood… we do not hate ourselves unless you teach us to. Being strange has as many perks and privileges as it does drawbacks. The same sensory sensitivity that makes us cry in the supermarket allows us to hear the music in a single drop of water ringing against a glass. The obsession with detail that makes us line up our pencils Just So and count every crack in the sidewalk can make for brilliant scientists, mathematicians, artists.
I don’t have an Autism Spectrum Diagnosis. I may or may not qualify for one– I still do not know.
My housemate does have a Diagnosis, and so do the majority of my friends. So do many of the children I work with professionally. I love the kids I work with. They all remind me (a little bit, in various ways) of myself.
I wouldn’t wish for any of us to be any different than we are.
I hope for more people like us in the future.
I hope for a world where we are accepted and loved, where our weaknesses are supported with compassion (not pity), our strengths are encouraged to grow and shine, and our innate value as human beings is never questioned.
Please don’t seek a cure for autism. Seek a cure for ignorance, for misunderstanding, and for intolerance.
Autism is not a disease, it is merely a difference that a minority of people are born with. Help us learn to fly, and watch us soar.
The reality of depression is that it is a state in which your brain regularly lies to you. OK, let me qualify that, because the healthy human brain also regularly lies to us; it is, in fact, designed to do so, and the fact that it does so with such skill and efficiency may be one of the secrets to the success of the human race (google “optimism bias” if you’re interested in this).
The depressed brain lies to us in some very distinctive ways (leaving aside the hairy philosophical question of whether there is a “me” that my brain can lie “to”: short answer; there isn’t). It tells us that life isn’t worth living, that others hate us or look down on us, that we are worthless (or worse, burdens). It gives us certainty that we cannot succeed in our endeavors, that doing so would be pointless even if we could, and that there is no brighter tomorrow to which we can look forward, and it tells us these things with deep conviction.
These thoughts have no rational or logical basis, and as such, they are often relatively immune to logic. These are “gut” feelings, often of the same intensity as our other beliefs and our certainties about our own memories (which are, yet again, far from factually correct even in mentally healthy humans and possibly even more distorted in those experiencing clinical depression). These damaging thoughts repeat over and over, wearing deep grooves into our minds, getting us stuck in mental ruts so deep we cannot even see that we are in them. Attempts to argue our way out of them often turn into vicious cycles that spiral back down into the depths no matter which way we turn, and sometimes, the only way to get our negative thoughts off their track is to hit them broadside with the mental equivalent of a football tackle. I have been known to treat the words “my brain is lying to me” as very nearly a mantra on occasion. If I can focus on nothing beyond that one fact, I stand a chance against all the other terrible things I am so terribly sure of at that moment.
Many people who have read up on depression in order to better understand or help a suffering loved one have run across descriptions of this. But there’s something those articles often fail to mention, which is that talking yourself out of these self-destructive beliefs is a constant in the life of someone with depression. It’s not just once or twice or when we’re at our worst. It’s something we live with permanently.
Medication can help, and it can help a lot. Being in a better situation in our lives can help, but doesn’t always. Maintaining healthy habits of eating, sleeping, exercise, and self-care can help, but these are hard to maintain and even harder to start in the first place, and for those of us whose brains tend towards depression, a small slip in our daily routine can be the tiny chance our neurology was waiting for– we may teeter, overbalance, and plummet back to the depths. Most importantly, we can develop good mental habits. We can force our brains again and again into healthier patterns of thinking that make it easier to counter the negativity welling up within us. We can get better at recognizing the lies our brain tells us and refusing to believe them. We can build up reserves of good memories, good relationships, and other sources of strength to draw on in our darker hours.
But the struggle is always there. I am, currently, fairly stable on two medications, in a good place in my life (college degree– in psychology, no less!–, sufficient financial means, a solid romantic relationship), and a many-year veteran of mental illness with a good deal of practice managing my own disorderly mind. And yet, depression is never far away. It sneaks up on me in odd moments, at night in my dreams, in the mornings before I get up, when I make little mistakes, when I feel the least bit physically ill, when I skip a meal or don’t get enough sleep, when I worry, when I make the mistake of comparing myself to others, when I think about my future…
I have been depressed for many years. I have only very rarely been close to suicidal. The lies my brain tells me are not the enormous ones. I am grateful that I almost never consider life something that is not worth living. But I struggle. A little voice in my head says over and over, “why bother?” It says “You can’t succeed, so don’t even try.” It says “it’s not worth the effort.” Sometimes it’s not a voice and words, but an emotional weight that feels physical, that makes me hesitate for an instant before taking my next breath. That makes me turn off the alarm before I’m even awake because a little part of me is awake and doesn’t feel up to facing the day yet. That makes me want to lie down and rest, again and again, instead of doing something more productive.
I talk back to the lies. I convince myself to do things, to try, to socialize. I tell myself, “Do it! It will be fun!” and “You can make a difference,” and “It’s worth the effort to… eat, read, answer an email, call a friend, wash the dishes, get dressed on days when I don’t have to be anywhere, tell a joke, go for a walk, cook a meal instead of eating fast food, apply to that job, repaint the room…” any of the myriad projects, large and small, one-time or every-day, that so many people do without a second thought. I have to talk myself into them, again and again. I am my own coach, counselor, cheerleader, comforter, and conscience.
I can do it. And I do. But it’s a never-ending task, and an exhausting one. I have to answer the question “why should I bother?” sometimes multiple times per day. It is frustrating, sometimes infuriating. It takes my energy and it takes my time and it leaves less of those things for all the other activities listed above. Depression is a weight I carry with me nearly every day– not a huge one, not usually, but enough to cause a little extra drag, to slow me down, to cripple me just a bit (and as someone who works in the field of disabilities, I use the term “cripple” very deliberately here). Not even so much that most people would notice. Sometimes even I don’t notice, until those oh-so-rare moments when the weight lifts entirely, and for just a few days, or even hours, every action comes to me so easily that I cry at the difference between this feeling and my normal life.
This entry turned into something longer and more complex and far more unwieldy than I originally intended. I can only hope I have given some insight– both to others struggling with depression and to those lucky enough to be free of it– into the fact that surviving depression is a process rather than an endpoint. It is, I hasten to reassure anyone in doubt, completely and entirely worth it. My life may be an uphill struggle, but it is also rich with worthwhile goals, pride in my accomplishments of every size, great joys and tiny fleeting beauties. Every good story I read, every tasty meal I eat, every sunset I watch, every joke I laugh at, every moment spent with friends, every time I make someone else smile, every tiny thing I teach or even make someone else think about– these are the things I live for.
I have faith that these things will endure, and that I will encounter more of them in the days to come. And as an atheist and skeptic, I believe that I have only this one life, one single chance to experience what I can, to learn and grow and share and love and most of all to leave this complex, incredible, amazingly beautiful and baffling world, in some tiny way, a better place than I found it– and if there is such a thing as a sin, the only one I can imagine is to give up on that glorious opportunity. And so I will, in the words of Joseph Heller, “live forever or die in the attempt,” and no matter how difficult life is, I will cherish it, and never stop looking for ways to make it better.
[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.
[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. 🙂
I am suddenly struck, once again, by the intense desire to try to explain the experience of clinical depression to those who have never endured it.
The word “depression,” to so many people, conjures up mere sadness, and makes them shake their heads in bafflement at how such a thing can entirely derail a person’s life. Those who have lived through intense sorrow or intimate grief understand better how all-consuming such emotions can be. But depression, at least for me, has very little to do with being sad, or even being anhedonic (devoid of feelings).
To me, depression means a bone-deep fatigue, an exhaustion that is physical, mental, and emotional all at once, as though I have just spent a week pushing myself through such stress and hard work that I’ve reached the very limits of what my body and mind can stand. Maybe those of you who have gone through military training or getting a PhD or working backstage during a Broadway production any other form of intensive hazing may have a sense of what this is like…. except that depression, at least as I experience it, has no discrete and perceptable cause, is not limited to a short span of time, and does not include any sense of accomplishment to mitigate the pain.
For the rest of you, I ask you to remember a time when you were ill with a particularly unpleasant bout of flu or cold. There was probably at least a day, at the beginning or end of this sickness, or when you were recovering from a major injury, where you felt neither distinctly sick — in the sense that you had no fever, were not vomiting, were not in actual pain, etc. — nor explicitly well. You were stuck, at least temporarily, in an unsettling in-between state whose existence you had probably never even considered before.
Everything seemed to require more effort than usual — walking, talking, even thinking, as though you were half asleep and wearing weighted clothing. Your mind and body were clumsy, and easily pushed off balance. You were capable of doing most things, and maybe even capable of doing them well if you concentrated very hard, but there was no such thing, that day, as an easy task.
You could lie on the couch and watch TV or perhaps read, but any other activity, no matter how fun, or chore, no matter how light, seemed overwhelming and, frankly, not worth the effort. Going to the grocery store, fixing yourself a meal, studying, balancing a checkbook, making a phone call, having lunch with a friend, seemed to require not only more physical energy than you possessed, but more ability to concentrate, and more emotional fortitude as well. Ultimately, you wanted more than anything else to rest, to recharge, to be free for the moment of the obligation to do anything more complicated than breathe.
I hope you can recall an experience like this one. Now imagine, if you can begin to do so, spending at least 50% of your time feeling more or less this way. Having to struggle every morning to drag yourself out of bed as though you haven’t slept in days. Clinging by your fingernails to moments of clarity, energy, momentum, or motivation, because you don’t know how long they will last or when they will come again. Slogging through the basics of what has to be done — cleaning and feeding yourself, keeping up with the bills, walking the dog, going to work or school — always struggling to do more than the bare minimum required but oh so rarely able to do as much as you want.
I live like this. With a near-constant weight inside my chest dragging me down, a ball and chain around my mind and will. Every day I push through it, fighting just to keep moving. Like a wind blowing against me, it is a constant force, but the force of it is not constant. It lightens for a few hours or days at a time to the point where I barely notice it. Sometimes it vanishes altogether, briefly, and I realize with shock how much affected me even on the “light” days.
Then it sneaks up on me again so subtly I nearly grind to halt before I notice it has returned. Or else it hits me out of nowhere with the full force of a line-backer’s tackle. Sometimes I freeze, mid-moment, suddenly unable to lift my fork to take another bite, or write the next line of text, even holding my breath as the wave crashes into me and I suddenly have to re-evaluate my plans for the rest of the day, even the next hour…. and wonder, each time, if I must re-evaluate the rest of my life as well. If I can even bear to continue.
Every time, I say yes. I have no desire to die — none at all. Perhaps this is because I am on medication for my depression, and as bad as everything I’ve described sounds, I know it really isn’t that bad at all in the grander scheme of depressive disorders. I also know that my life is a relatively easy and greatly privileged one, and I sure as hell don’t want to give it up.
All the same, I live almost every day on an internal battlefield, and some days it takes everything in my power to hold the line, let alone feel victorious. The word “depression”? It doesn’t even scratch the surface.