Tagged with " mental health"
Oct 7, 2015 - Psychology    1 Comment

Vignette: Lost in the Shuffle

To go along with the series of posts I’ve been writing about my recent mental health hospitalization, I’m adding a few short scenes from life on the ward. Hopefully, they’re a good complement to the more traditional posts.

Pills in Cup“What are the pink ones?” I ask the nurse as he hands me my morning meds in a tiny paper cup.

“The same as yesterday: your allergy pills,” he answers, his attention on something else.

“Huh,” I reply. “I haven’t had my allergy meds since I came in here. Maybe it’ll help with this stuffiness.”

“No,” he says slowly, like he were teaching a child. “You had those yesterday.”

I frown. “No, no I didn’t.”

He sighs and reiterates, “Yes, you did get them yesterday. 30-30-30, which makes 90 milligrams, remember?”

“No,” I answer flatly. “I’m very sure I didn’t. There was no pink in my cup yesterday morning. I remember.”

His bedside manner dies a quick, cold death in the face of my resistance. His mouth tightens into a flat line for a moment before he says, “Well, I guess we’ll have to agree to have different memories, because I know I had the same conversation with you yesterday.”

“No, I didn’t!” I exclaimed. “I might be wrong about the pills; I don’t think I am, but maybe. But I’d definitely remember this conversation. This is not a replay.”

He looked at me sadly, as if my disagreement disappointed him gravely. I didn’t think you’d be the type to argue, his expression said. “I’m sorry you don’t remember,” he said.

“I remember fine,” I snapped. “I’ve got a photographic memory. I remember the cup, I remember the pills, I remember the blue and green pattern on your damn shirt. I did not get anything pink yesterday.”

He walked away, ducking his head as if to stave off any further argument. I sat back in my chair, winded with exasperation, and then it struck me like a fast car:

This is how it starts. Now I’m the lady arguing about pills in the psych ward.

I’m the one whose memory has holes in it like depression had walked through the spiderweb of my days, tearing whole sections out. This tool I rely on so heavily—these millions of flashbulb pictures I layer, sort, and store all day, every day—it’s unthinkable that it would fail me.

I can recall the yellow pattern of the wallpaper in my nursery as I lay on my back in my crib. I can recall the precise color of any piece of my clothing so I can match thread to fix a button while I’m out shopping. I can go through our house and say where we got almost every object in it. How can my memory have ejected something so recent, so memorable? What else would it suddenly toss out into the void? How long would it take me to miss it?

Is this how it is for the other people in here, the frequent flyers? When did their memories start to shuffle unexpectedly, like furniture moving itself while you’re out of the house? How many conversations did they forget before they started to doubt the solidity of the ground they were building their lives on? How do they plan a future or react to a crisis if they can’t call up a clear, certain memory of what went before?

I was swamped with confusion, but the beacon that drew me through the fog was empathy for these temporary neighbors, and all the people like them in mental health units and outpatient programs and aching solitude all over the world. In feeling the vertigo of being adrift in the sequences of everyday life, I wanted to rush around, planting signposts, affixing Post-Its to bathroom mirrors, tucking notes in lunchboxes to remind them that there is order and love and understanding out there, even if they can’t remember it.

I sat by the window most of that morning, looking out on the endless Mississippi River flowing by. I thought about how it didn’t need to remember any of the people who’ve traversed it over millennia to follow its inexorable path. I stayed with the terror of losing the reliability of my own memory, and how it might feel to learn to flow without staking out landmarks every inch of the route. It would mean letting go, the hardest thing in the world for me to do.

On my way past the nurses’ station around lunch, I heard a voice call my name. I looked over and saw the morning nurse. He had an odd look on his face, like someone who’s about to do something their parent is making them do.

He cleared his throat and said, “Um, so, funny thing. It turns out I was mixing you up with somebody else who also gets allergy meds. It was her who I talked with yesterday, not you.”

I stood silent, shocked to get this admission from anyone in authority. People in mental health units don’t have to apologize for anything, typically, not even fairly egregious mistakes or omissions.

“So, heh, I guess you didn’t get those meds yesterday. Sorry for the confusion,” he finished, shuffling papers on his clipboard so he wouldn’t have to make eye contact with me.

I nodded and thanked him for the apology, when what I really wanted to do was pump my fists in the air, and hoot, and run a victory lap around the TV lounge. I don’t need to be right all the time. I’d even made a weird sort of peace with being wrong. But I’d be lying if I didn’t say all I felt at that moment was a rush of relief like the one when you finally see a road sign after doubting your direction for miles on end.

moabranchroad

Oct 5, 2015 - Physical Ed, Psychology    3 Comments

Telling Time

This is the third in a series of posts about my recent struggles with mental illness. You can find the first post here, and the second one here

TW: self-harm, suicide

Doctor Who Spinning Tardis watch

This is not my actual wrist, or my actual sonic screwdriver, but it IS the watch I wear. I wear mine with the face on my inner wrist.

I started wearing my wristwatch last Thursday. I had to go out and do things, and part of my leaving-the-house routine involves putting on my watch and the two rings I keep looped through the band when they’re not on my fingers. It felt good to slide the heavy cool rings in on my right hand again, to run my thumb over the runes and ocean-grey gemstone.

But I winced as I buckled the watch, because it sits right over the wound on my wrist where I tried to kill myself. I put it on anyway.

It’s not much of a wound, to be honest. I heal very quickly; it’s at the itchy stage now, worse than any of my tattoos were. The only reason there’ll be a scar there is because I was so quiet about it when I got to the hospital that nobody remembered to do anything until I reminded folks hours later, up on the ward. They told me it was too late for butterfly stitches or super glue, and had me wash it well.

Let’s be clear: when I wear my watch over it, it’s because I am ashamed. I am ashamed because it’s a weak wound, messy and shallow, with many individual cuts barely deep enough to break the skin’s surface. It’s humiliating because it looks like I didn’t mean it, like I was only willing to commit enough to draw some blood and get some help. I want to tell people, no, the knife was much duller than I thought, and once I was sitting down with it, with the pictures of my sons in my lap, I was crying too hard and too weak to stand up and find a better blade.

I’m embarrassed that I couldn’t even do that right. I feel like an imposter so much of the time, which is part of what makes it difficult to internalize any of the nice things people say to and about me. The day I tried, I was crushed beneath a thousand failures, things that I see every time I look at myself in the mirror. Those failures are like other cuts, disfiguring me so thoroughly that I can’t understand how anyone could see me and mistake me for a good person. To fail to cut like I meant it just puts more hesitation marks on me, signals that I can’t perform under pressure—a pictograph for despair and incompleteness.

I’m ashamed that I feel confident enough to write about these 2014-09-19-1062seafeelings so openly here, but I’m mostly unwilling to have a conversation about this in person. Even with good friends, I’d rather the mark was out of sight so we can talk more abstractly about my problems. The wound is the very opposite of abstract; it is hopelessness in a concrete, raised mark. When I don’t want to have those conversations in real life, I feel like as much a fraud as some sea lion (see adjacent comic) flopping around online, splattering his abusive comments all over everyone’s internet when he barely has the guts to say hi to his neighbor if they collide on the street. I’m just another fake getting virtual courage behind a computer screen.

I’m even ashamed that I didn’t want my parents to find out about any of this. My mom’s not on Facebook, and my siblings unfriended me five years ago, so it’s ironically safe for me to use social media as an outlet and expect it not to get back to any of them. One of the only things I insisted on that numb night I checked into the hospital was, “Don’t tell my mom. Nobody needs that.” The first and last previous time I’d been suicidal enough to go into the hospital, the first words out of my mom’s mouth when she called me there were, “How could you? How could you even think of putting us all through this?” I knew what she meant—I remember the hollow devastation in the days after my grandpa took his life, the questions and no answers. And to be perfectly honest, I just didn’t have it in me this time to sit through that tirade. Guilt was already twisted into every muscle in my body—I couldn’t take any more. But it’s hard to forget that I can’t even do family right when it’s needed most.

With luck, the scar won’t be visible much longer. For months now, I’ve been planning to get a tattoo to remind me to stay alive on the inside of my left arm. It’s the smoothest, palest skin I have, the perfect parchment for a reminder like that. And it shouldn’t be hard for a talented artist like my friend to weave the design around the scar. I like the thought of burying it under something beautiful.

Even then, though, I’m not sure how much longer I’ll be ashamed of that mark. It’s so second-nature to find features and flaws in myself that demand to be concealed so I don’t risk rejection for them. I know some will tell me it’s just the receipt for the price of this precious life. I’m not ready for that yet—I see my belly’s stretch marks that way, but I can’t find what’s redeeming in this piece of evidence yet.

Stigma is related to the word stigmata, the marks on Jesus’ body from his crucifixion. To see and touch them was proof of his identity. This scar translates the stigma of mental illness into that physical evidence, and even covering it with a tattoo or a watch will not erase the judgments it will provoke when others and I will see it. Time will have to tell whether it becomes a symbol of failure or redemption.

The Long Con

This is the second in a series of posts about my recent struggles with mental health. You may be interested to read the first post first.

Real Lottery Gravity Balls

A psych ward is a funny place. About the only other places you get such a random assemblage of people, stuck together for so long, are jury duty and prison.

The mental health unit has characteristics in common with both. Drawn from a surprisingly broad cross-section of society, the hand on the lever of this lottery is mental illness. Once you’ve “registered” in this particular Powerball, it’s only a matter of time before failures in the medical system, stress, and coincidence bring your number up. Some people try not to accept the summons, but you can only put it off for so long.

And like prison, those in the ward have very little control. Doctors abide by the same scheduling habits as cable installations. Meals show up around regular hours, but orders are skimpy and frequently wrong. Sometimes this reaches the realm of comedy, such as the guy who randomly got four—count ‘em FOUR—prune juices with breakfast. One guy said, “It’s enough to make you laugh,” to which I replied, “Dear gods, don’t make him laugh!”

If you need or want anything, plan early and ask often. Ask before you actually want it, in fact. What distinguishes the veterans from the first-timers is how they get what they need. They know exactly when to get louder, talk more, pace faster, move objects. This is classic agitation at its finest. The rest of us who aren’t willing to trade the shreds of our civility for what we need look on in an awkward combination of embarrassment and admiration.

Anything that helps kill time is a valuable commodity, but residents aren’t working with a full bank of options. No cigarettes for those whose days tick down ash by lengthening ash. No freedom of movement—the whole natural world is look-but-don’t-touch beyond glass windows, and without fresh air, we all pale, cough, and itch in the dry, controlled environment. I asked for yarn and a crochet hook to keep my fingers from being fidgety, but security measures mean that even dental floss only comes in six-inch increments. When I pointed out that you couldn’t do much with six inches of anything, one lady cackled until I got the joke and blushed.

We talk to each other because there’s nothing else to do. Some people are desperate to tell their stories; once the floodgates are broken, the pain of their lives flows out, carrying the flotsam and jetsam of broken relationships, fractured trust, crushed hopes. Others fold in on themselves, all raspy paper angles, like grim, silent origami. The staff tries to draw these shy ones out of their shells, but it ends up being a ridiculous commercial on TV or a silly conversation among the more gregarious inmates that prompts them to eventually break the silence. And what they say often surprises us with its unexpected dry wit or snappy observation.

The truth is, there’s no way to know what’s the truth about anyone in here. Some stories, told with wild gestures as misplaced punctuation that breaks sentences in odd places, can’t possibly be true. People adopt credentials they never earned, claim other people’s whoppers as their own. There’s no fact checkers, no Snopes, no common acquaintance to call out a lie.

One guy has set himself up as a kind of professor, soliciting consultations at group meetings, so he can share his accumulated wisdom and expertise. What he doesn’t impart to others (in his too-rich language, full of ten-cent words misapplied and mangled) goes in notebooks that curl with the force with which the words were pressed from the pen. Another woman swears that she’s a trained law enforcement officer. Her stories start out plausible, with all the right jargon, but veer unexpectedly into obvious delusion before swerving back to the reasonable. Her timing doesn’t match her storytelling, either; she interrupts other conversations mid-stream, holds forth for a few minutes, then paces away rapidly before she finishes the sentence she started.

Next to these folks, I sound just as braggadocious when I mention that I used to teach college, or that I’m fluent in French, or that I ran for school board. I could claim that I earned my Ph.D., that I travel the world, that I have 100,000 Twitter followers, and it would sound no more or less true than anything else I claim. Experiences are hollowed out to just the visible shape, the lives outside our ward far away and nearly irrelevant to the problems that landed us here.

Whatever stories we’re telling, whatever tales we’re selling, we’re all con artists on the ward. We’re on the grift, we’re looking for the next score. But the get-rich-quick schemes we’re peddling promise a healthy life instead of riches.

We know the real road to this treasure is long, hard work, but the wait seems impossible. With the zeal of newfound converts, we’re sure the new meds are going to do the trick: stop the jitters, feed the craving, push back the dark, deliver blessed sleep. We profess our dedication to the routine of self-care and reflection. We vow to sidestep gaudy temptation and all her lures—so seedy and threadbare by sober daylight, but delicious, seductive, irresistible in the dark stretch of night.

We call family and friends, throwing out line after tenuous line into the river, trying to catch anything secure enough to weigh us down against the relentless current. Even estranged, unhealthy bonds look good enough to hold in here, though you heard them spill the numb-lipped story of damage done by the same person with whom they’re now cuddling and caressing the phone handset.

Practical, long-term solutions feel like magical thinking here. It’s clear that none of us can wait long for real improvement, not when the next drink, the next hit, the next catastrophe might show up before we even get home from the hospital. Logic demands that we cook up something faster, and so we mastermind the new scheme for a windfall of happiness and safety.

Too bad the house cheats. Too bad we’ll never make it out the door with our stolen goods. At least, in this place between folly and failure, we’ve got plenty of fellow grifters to appreciate the beauty of the plan.

Ocean's 11 at the Bellagio

Oct 1, 2015 - Psychology    17 Comments

The Place That Scares You

TW: suicide, self-harm

What lands a person in a psychiatric ward is a trip beyond the pale, a dip in the waters of extremity that run so deep, it terrifies the people around us as we flirt with the bottom. I didn’t reach a tipping point the day I hurt myself. I wasn’t hearing The Critic or The Stalker any more loudly or frequently that day than the one before.

No, the day I hurt myself was simply the day I couldn’t wait any longer to be heard. I tried to check in two weeks earlier, but the gruesome fact of mental health today is that there is no room at the inn for the safe. You must be pursued to the gates by the hounds of depression, or delivered in a heap just one step shy of the morgue, before a bed will materialize. The first time I went to the ER, I wasn’t willing to say the feelings were anymore threatening that day than any other. I knew which buttons I would need to push to get what I needed from this torturous, Russian-roulette game of a Skinner box, and that day, I wouldn’t play.

It shook loose a few resources I needed, though, to crumple and collapse so mortifyingly before others. A week’s wait to see a new psychiatrist is a breeze compared to the four months it would take without the stamp of desperation I let them put on me. But the new meds are mighty slow to upload. Three to four more weeks before even a glimmer of future usefulness might be perceived, the doctor says. You think, I can do that—it’s at least a destination, not just the yawning abyss of uncertain improvement.

But sometimes, some days, waiting it out with gritted teeth just doesn’t work. The sympathy garnered for a hospital visit that doesn’t become a stay is thin as skim milk. The pressure mounts up again almost immediately, sure as gravity. That scream for help is so fresh in your mouth, you can still feel the jagged, blocky shape of it. But for everyone else, it’s already passed into distant memory, evaporated by the breezes generated by our fast, forward movement. You want things to be normal, so you act like they’re normal, but they’re not normal. And you still need the help.

That’s how you find yourself, crying all day, your mind on the thousand other things awaiting your attention, things you probably should be doing instead. Things you begin to think you’ll never get done. Things you begin to think would be better done by someone else. Someone better than you. A better worker, a better friend, a better wife, a better mother. Anyone better.

Anyone whose body isn’t so broken and weak. Anyone whose mind doesn’t spin uselessly on endless loops. Anyone whose senses don’t spark against every stimulus, lighting fires of irritation that burn through patience and kindness, that driest and most precious kindling. Literally anyone else. But you stand in the way, The Stalker reminds you. No one else can pick up these duties until you let them go. No one else will step in and do what you can’t until you’re gone. It’s the most sensible thing in your irrational world: Just get gone.

At that point, it hardly matters whether you’re successful. If you are, you’re gone, and that’s it. No eternal reward, maybe not even a sense of rest and a second chance, but at the very least, a cessation of struggle.

And if you’re not, well, that attempt makes your earlier cry articulate, etched in your undesirable flesh. Nobody would do this if they didn’t need help, so help they must get. There’s a line between the normal world and the extreme, and by carving a part of it into your body, you have crossed it. People tend to take notice of those gestures; if you’re lucky, they take notice while there’s still time to help. It’s almost funny to see the rush of activity, the urgency of concern, when you’ve been crying out for so long. Why was this the thing that got their attention? Is it really that arbitrary? Is it just a matter of sacrificing pain and safety to unlock these bystanders and their will to act?

Why would anyone wait, if that’s the case?

These are the things that make people consider self-harm in the first place. And if it does anything well, the psych ward confirms that there is no advantage to be gained by waiting patiently, asking politely, respecting boundaries. In this place, all that gets you is overlooked and underserved. I have to be willing to sacrifice my general unwillingness to be a self-centered pain in the ass in exchange for better care. Some days, that’s not a trade I start out willing to make.

The heart of what I need to learn is how to ask early and often, not for anyone else—I could raise a million dollars, turn out a million voters, teach a million lessons, just so long as it’s for someone else. I’m long on giving, because it’s how I define my self-worth; I’m very, very short on taking, because I’ve internalized the idea that the more space I take up on this planet, the less there is for people who deserve it more. Even just writing this blog post, with the distinct possibility it’s only worthwhile as my own way of processing things, feels like I’m wasting people’s time.

The psych ward gives its residents an odd assortment of gifts when they check in. You give up your shoelaces, your vices, your freedom, your control. What you get back is deceptively cheap. You get an excuse from anything that might demand your attention. You get a medical team all in one place. You get to rest as much as you have to—just think of the last time you could really say that. And you get to be entirely honest about how much you need help.

These things aren’t really cheap, though. To get them, you need to do something most people can’t—you need to stay in the place that scares you. The place on the banks of that deep water that would swallow you up as soon as give you your reflection. Staying that close for that long makes people in the normal world anxious; they want to help, but the water is terrifying, and changing the subject seems like the best defense. In the hospital, though, you’re not the only on the water’s edge—you’ve got company, right there in person. And because we’ve all crossed that line somehow, it’s not hard to invite each other to pull up a chair.

Sep 3, 2015 - Psychology    No Comments

Alright

You know what feels really great?

Walking down the very middle of a street.

No, really, I highly recommend it. The first time I ever did it, I was in the company of about 1 million other people streaming down the middle of Pennsylvania Avenue in 2004 as part of a demonstration of support for women’s choices in reproductive health care. I’ve also enjoyed many of Minnesota’s fine thoroughfares this way: Nicollet Mall, Hennepin Avenue, University Avenue, Snelling Avenue, I-35, to name a few.

Most recently, I strolled back up Snelling Avenue at a leisurely pace, following the peaceful and successful #BlackFair demonstration. I was still working in my marshal role, but I only had half as many people to look out for. So I was taking up as much space as I felt like, because nobody gets a lot of opportunities to stretch out on this planet, and I’m not one to let them pass me by.

I complimented a fellow marcher on her excellent sign, and we got to talking about the action and what else we were setting aside from our busy lives to participate. I asked what brought her out, in her walking cast boot, and she replied simply, “Activism is my self-care.”

Deep inside, I heard the resounding chime of the Bell of Truth, because I agreed so strongly with that statement. Activism is my self-care too. That’s true despite the physical toll that direct actions have on my thoroughly unreliable body; I would spend Sunday in bed recovering from Saturday’s events.

But as the meetings for #BlackFair and planning for other actions kicked into gear earlier that week, I noticed the immediate impact it had on my depression. The mental and social engagement of planning with old and new friends blew through that dark bank of clouds like a brisk wind. I found myself not only excited to keep building the movement, but the sunshine woke up other parts of me that had slept through the long, sad summer. I made plans to pick up some cloth to make crafts for friends; I opened files for the book I’m writing and started building sandcastles of plot again.

Marshal Mom JessCommunity organizing in the movement is good for me in other ways, too. I don’t really just attend demonstrations as one of the crowd anymore—I’d much rather put on my oh-so-stylish neon vest and work to keep people safe and supported as they take part in the action. This is one of the few things I will admit to being good at, that gives me any sense of pride in my competence and skill.

I like to joke that, “I don’t marshal; I mother.” That’s more true than people realize. I don’t just come ready to redirect traffic or crowds, I come with the Mom Bag loaded for bear: full first-aid jump kit, snacks and drinks, tissues, sunscreen, even bubbles for the little (or not-so-little) ones. It takes all lanes of my busy, pattern-seeking, autistic brain occupied to be constantly scanning the crowd and the environment for potential hazards and those needing help. And solving problems big and small—from checking in with mobility-challenged participants to de-escalating people seeking to disrupt the demonstration—gives me the feeling of protecting and emotionally supporting my Beloved Community. Marshal Mom Jess 2

And I laugh with joy when I see people really getting into a chant, or when we’ve got a sound system on the back of a truck to pump out the jams for a dance party in the middle of an intersection. I see them participating with their whole bodies and souls in acts that center marginalized people and help them take up that space and sound on the planet to which each of us is entitled. It fills me up with powerful hope for the future, and energizes me to create more of those spaces that so strongly affirm every person’s beauty and dignity.

Image courtesy of MPR News (http://images.publicradio.org/content/2015/01/19/20150119_mlkmarch19_53.jpg)

But I realized that I haven’t been IN those spaces for many months now, maybe years. I run the edges, solve problems, help where needed, which is so absorbing that, when I see photos after the fact, I don’t even have any memories of people doing those things. I don’t always get to link hands with everyone and participate in the powerful chant by Assata Shakur that reminds us of our duty to fight for freedom, to love and protect one another. And when “Alright” by Kendrick Lamar starts blasting from the speakers and everyone dances, I’m usually standing stock still in a crosswalk. Last time this happened, I faced down a muscle car driven by an angry white dude who hit the gas three blocks away, to screech from 45 mph down to zero only six inches away from my shins, looking me in the eyes the whole time.

I'm the one with the text on the back of my shirt. Photo credit: Chris Juhn.

I’m the one with the text on the back of my shirt. Photo credit: Chris Juhn.

I hope nobody in that circle of wild, glorious dance really noticed that car, or even me. I hope the music and empowerment blinded them to everything but the other beautiful faces in that crowd. I hope the people I help when I marshal only remember someone kind, not my face, not even my hair.

But I’m not sure if I’ll ever feel missed or wanted in those crowds. And I’m not sure if who I am—the depression, the self-esteem, the knowledge that I’m not who the movement is for (or should be about)—is even capable of dancing to the words “We gonna be alright.” I’m not sure what this movement would mean to me if I could.

Aug 31, 2015 - Psychology    3 Comments

Cruel Summer

I say this with the best of intentions, but I hope nobody noticed how bad my summer was. Because the narrative of a depression relapse in the middle of your vacations, camps, road trips, and lazy days is really what Alanis Morissette thinks irony is (rain on your wedding day, etc.). But I’m more vulnerable to them because summer has always been the cruelest season for my family and me. Summer is when the work dries up. Summer is when child care is too expensive for me to work regular hours. Summer is when even the smallest get-away costs more than we can afford. Summer is when I almost died five years ago when we first moved to Minnesota.

I didn’t catch the relapse as quickly as I might’ve because I don’t just have depression, I have significant levels of anxiety. Even when you’ve been okay, part of your mind as a person with depression is constantly standing on a foggy dock, straining to see through the mist for the first solid emergence of the prow of a relapse that might crush you. That’s exhausting by itself. But when you’ve got anxiety, things are constantly emerging from that mist—it’s just that most of them are giant piles of overinflated worries that cleverly take the shape of a ship, and pop like soap bubbles when they hit the dock. This time, behind the endless stream of bubbles, there was a ship.

I’m a good patient. I noticed the pattern in my sleep and appetite, my restlessness and constant exhaustion, and told my therapist. I stay on my meds, I don’t miss appointments, I don’t try to hide what’s going on from my medical team. But I don’t talk about it much, because I feel certain that people want to know the energetic, laughing me who accomplishes things and supports others. I don’t even want to know the other me.

And I’ve learned things this time around. I’ve named two of the voices in my head who live there and tell lies. One is The Critic. He (yes, he) tells me that I should be doing more, doing better, using my time differently, spending my energy more wisely. The Critic points out mistakes and replays conversations over and over so I can see where I should’ve handled it well, instead of how I did. The Critic is not interested in reason or evidence; The Critic’s lens distorts everything beyond recognition.

The other voice is The Stalker. The Stalker is full of patience, and never needs to raise his voice. The Stalker hangs back in the shadows, creating his own if I’m trying too hard to use sunlight as disinfectant. The Stalker waits for The Critic to chip chip chip away at my memories and sense of accomplishment. The Stalker feeds kindling to the cold fire of Doubt. And then, The Stalker says, quietly and calmly, “You really shouldn’t be here at all. You make work for others, you contribute nothing. No one would care if you disappeared right now. Someone better would take your place, someone with a body that worked, someone with a mind that focused, someone whose voice is needed. You cost your family more than you bring in. They could live better when your debts were erased and your insurance paid off. You’re more useful dead than alive.”

And the problem is that neither The Critic nor The Stalker are wrong all the time. Depression registers their input as just as valid as any other outside source, more than some. And depression makes you too tired to call them liars all the time.

So I hope I’ve seemed okay this summer, when I found myself making bargains with myself to put off death by another hour at a time. And I am getting better, only now when there’s another lost summer to mourn. I hope my kids don’t inherit a sense of dread for this time of year from a mom who naps in the day because she worries all night, a mom who says no and gets irritable at them for being kids with the bad luck of having someone with depression as their parent.

I hope, when you saw me this summer, you remember my laugh as I joked about my new hair color or cheerfully threw down with the revolution. But I guess I also hope that, through all that, you understand that you were also talking with someone who thought about suicide every day, and battled through the heat of summer in the cold of depression. You never know who else you talk to who might be fighting the same battle.

May 19, 2014 - Psychology    No Comments

The Slowest Spring

It’s May 19th, and it’s rainy with temperatures in the 50s. This is par for the course this spring—only the lightning and thunder suggests that it’s any different than March. The lilacs are only just beginning to bud; the haze of foliage on the trees is still more yellow than green.

Winter was brutally rough this year, setting records all over Minnesota for the longest stretch of below-zero days. Despite Vitamin D and a sunlight lamp, seasonal depression swept me under hard. I was home practically every night, going to bed early and waking up exhausted, only to sleepwalk through the day and do it all again. People asked me what would make it better; I replied, “The beginning of legislative session.”

1014038_832927833388313_1104830089_nAnd it did help, since I’m a wonky weirdo. Working to help pass the Safe and Supportive Minnesota Schools Act to provide strong anti-bullying legislation for our state’s kids was hard but familiar and empowering work, with some of my favorite people on the whole planet. I pitched in on the minimum wage increase and expungement reform too. I had places I was needed and appreciated, and my calendar was full and fulfilling.

But as those campaigns wound down, I felt myself begin to fray and flail again, instead of staying revived. At first, I told myself it was just my health that seemed to demand more naps and fewer commitments. But my temper grew as short as my endurance, and my motivation guttered like a bad candle that burned down too fast. Upsetting things that would’ve normally blown through like a storm wrecked me for hours and days. Things I’d looked forward to for months–like winning major legislative victories–only gave me a short burst of pleasure. The only pastime I engaged in was reading, and I recognized that I was using it for refuge more than relaxation.

So here I am, admitting the thing right as it’s happening to me: I have relapsed into depression. Yes, it’s been worse, but it’s not exactly good. Yes, I’m doing what I should be: taking meds, making appointments. No, I don’t have a talk therapist—my ability and tendency to talk over and around my feelings makes the exercise hardly worth the cost.

And yes, it’s improving with the weather. That is to say, so slowly as to be imperceptible. In the meantime, I’m planning, planting, dancing, and picking up my obligations again. The hardest thing right now is not to fall hard at the least little resistance I encounter. It’s also not easy to move out of the myopic fogbank I’ve steered into. I haven’t felt creative for months because I literally cannot see beyond my immediate circumstances, and even the smallest creative endeavor requires a bit of vision. I’m working hard to overcome that perspective, but support is always appreciated.

And in the meantime, I’m trying to remember that spring is coming, slowly but surely.

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I saw spring briefly in Washington DC, so I know it’s not a cruel hoax on Minnesotans.

Fix the Break

A week or so ago, I had a Brilliant Plan (TM). We’re making arrangements to take the whole family, our two sons included, to Origins this year. I’m beyond excited, but there’s a lot of apprehension there too. It’ll be the boys’ first con, and the first one I’ve been able to attend in several years.

It’ll also be the first con I’ve attended since I’ve known about my autism, and I expect that to be a revelation on a number of different fronts. I’ll be more attentive to the waves of sensory info coming in, and more patient with my preoccupation with the textures and graphic design of the costumes and games I see. I’ll understand why the exhibit hall and the crowded hallways between events take such a toll on my patience and energy. I’ll be more aware of how my autism affects my user experience of new systems and products. And I’ll be more mindful of how the chaos of the con environment uses up my available energy, focus, and physical reserves.

In the past, if I needed a sensory break from the crowds and chaos of large gaming rooms and the overwhelming stimuli of the exhibit hall, I had to schlep all the way back to my hotel room. Once there, the odds of actually returning diminish rapidly. When I finally stop moving so much, the tidal wave of pain and sensation I’ve been holding at bay swamps me, and I realize how much I’m hurting and tired. I can’t even think of going back to the convention center until I’ve had significant rest after that. It hurts to miss valuable time with friends I don’t see the rest of the year, but it hurts more to keep moving, to keep fighting my environment.

This year, I’m trying to do something about this. I’ve submitted proposals to both Origins and Gen Con–the two conventions I’m planning to attend this year–to establish a Sensory Break Room for people who are physically or mentally challenged by the rigorous environment of the con.

Part of this is wholly selfish. I don’t want to have to leave the convention center when (not if) my son needs a sensory break. I don’t want to have to go all the way back to our hotel room, where I know I’ll have fights over whether and when we go back, and why we don’t just stay and play XBox or something just between ourselves. He’ll be anxious and overwhelmed, literally by the amount of fun and multitude of choices available. And I don’t want to fight about whether we spend time at the place we came to spend time at.

The other part is more generous. If people like my son and I could really benefit from a room near the center of action where we can decompress for a few minutes, thereby gaining a few hours more of “on” time, I know we’re not the only ones who could use it. As people become more aware of neurodiversity, true introversion, and other conditions that make con activities challenging, it seems like the next logical step for adaptive services is to offer a nearby room where folks can go to recharge their batteries. Much as there are now nursing rooms available for moms who take their babies to cons, I think sensory break rooms are the future of necessary accessibility options for con attendees.

But what do I mean by a “sensory break room”? Let me do the negative definition before the positive one. It won’t be a hangout for people who just need a seat. It won’t be a quiet place to play quiet games. It won’t be a craft room for game widow(er)s looking for company. It won’t be a nursing or babysitting room.

The room will be screened off, instead of requiring users to open and close a clanky door. The lights will be kept quite low, probably too low to read properly, but there may be some soft, shifting colored lights to focus on. No music or other noise will be permitted, but a small fan or ionizer will run to provide white noise as an auditory buffer. Nobody will bug anyone else, but neither is it a nap room. If someone falls asleep, the monitor will wake them up after five or ten minutes, and each user will be responsible if they accidentally sleep through an event they’re supposed to attend. I’m hoping that the folks most likely to use it will be generous in bringing some adaptive tools to share–weighted blankets, exercise balls, fidgets, and other comforting objects. 

There won’t be a cost to use this space–I would no sooner charge for access to a wheelchair ramp than I would for access to this room–and its primary function will be as a room to decompress. Even just 15 minutes for most people gets them back another 2 to 3 hours of time to participate in con activities. The importance of this downtime cannot be overstated for making it a successful event for a significant number of people.

I’ve had a very good response from folks on Twitter, Facebook, and Google+, and I’m hoping that enough positive pressure on the Origins and Gen Con organizers can help us achieve a pilot test for this resource. I’m trying to figure out whether it’s possible to get enough con-goers to volunteer for a shift monitoring the room while it’s open (probably 10am-6pm Thursday thru Saturday), or whether I should see if I can get the local Autism Societies to get a few folks who would be willing to work a two-hour shift each day in exchange for a four-day badge. Either way, I’m also trying to pull together some of the best game designers/GMs in the industry to run “reward games” for the folks who put in the time to make this resource work well.

Think about that look–you know the one–when you see someone about ready to meltdown in the middle of the dealer hall, or at a game table in a deafening room of other game tables. No, grownups don’t throw temper tantrums the way kids do, but you can see the tightening in their shoulders, their jaws. Their eyes get wide, flash around to scan the room for exits and clocks to tell when they get to escape. They get snippy, impatient, or they shut down entirely: “My character just goes along with everybody else.”

There’s a way to avoid that happening quite so often. A room to decompress in, to take that break from the light and noise and sights and crowds, can stave off those sudden attacks. There are still kinks and details in the plan to work out, but I hope it sounds like a good idea to enough people that we can start to leverage some positive pressure on the con organizers. Whether or not you’re going, please communicate to Origins and Gen Con organizers that you think that this resource is valuable and worth accommodating in the outskirts of the main convention area.

Sometimes you have to break to get put back together. This year, we can provide a safe space for our fellow gamers to do that.

Feb 21, 2013 - Psychology    10 Comments

Not Worth The Ink

This’ll be a flash blog post, because I’m flash freaking mad.

I try not to get triggered into red-haze, blinding rage by every awful thing about autism that comes across my Twitter machine. But this was just too much to ignore.

You wish your kids had cancer?! And you’re willing to say that? Not just in the privacy of your own twisted mind, or the quiet of a deep night of self-loathing insomnia, or even to a spouse who might recoil in disgust that you would ever give voice to such a repellent thought, but ON THE COVER OF A GODDAMNED BOOK?!!

Autism is not an illness. It’s not even a disorder–it’s an overabundance of order. Neurodiverse people have difficulty engaging with a world that’s too harsh for their acute senses.

We Are Not Sick.

Autism Is Not A Death Sentence.

But parents like you who hate their autistic children so much, they’d prefer it if they had a devastating disease that requires even more devastating therapies with lifelong effects and increased risks including (most cruelly of all) more cancer, you are a death sentence. Parents like you kill their children because they don’t see the person–they only see the work and therapy and bills and grief. So they push those children under the bathwater and don’t let go. They wrap plastic bags and blankets over the angelic faces of children who are so much more than autistic. Sometimes the parent ends their own lives too, but more often than not, they just shake the Etch-A-Sketch and try to conceive a more “wanted” child who’ll give them the fulfillment of all their dreams.

And your book is going to come up in Google searches. Vulnerable parents, fresh from the shock of diagnosis, will see that title in the results. Some may even buy it from the greedy, vulture-like vanity press that put your despicable words into print. And they will think their child would be better off dead.

You. You did that. To the parent, to the child. You did that.

But you also did one other thing, one you didn’t expect. You made me mad.

ConnorJessSafeSchoolsSee, I’m autistic, and so is my ten-year-old son. We are (and I don’t make such claims lightly) rather amazing. Our memory, our keen senses, our vast imaginations, our complex thought processes, our rapid-fire senses of humor. Our capacity for unconditional love and good work. And we’re friends with other autistics who inspire and motivate and enrich and encourage us every single day.

I haven’t given up a single dream for either of my sons, the autistic or the neurotypical. Why should I? They may achieve those goals in unexpected ways, but they can do absolutely anything in the world.

How do I know? Because I have. I’ve graduated, made lasting friendships, participated in government, found and married my one true love, worked toward justice, invented things, created works of beauty, overcome adversity, and mothered two beautiful boys. I’m autistic, and my life is (sometimes uncomfortably) full of meaningful work and relationships.

ConnorJessAlFranken

Me, Senator Al Franken, Connor, and a fellow healthcare activist

I’ve been doing a lot of work on health care reform here where I live. In fact, I’ve been testifying at the state capitol about the importance of comprehensive mental health coverage as the state designs the new health care exchanges required by the Affordable Care Act (aka Obamacare). City Pages published an outstanding article about the fight to enact the Mental Health Parity law Senator Paul Wellstone fought for from 1990 until his tragic plane crash in 2002. Parity means that medical providers and insurance companies will be required to treat mental health by the same standards as physical health. The article is full of horrible examples of discrimination by insurance companies: a woman with an eating disorder was diagnosed to need an inpatient program by four doctors, and her insurance company, United Behavioral Health, rejected her claim nine times for such reasons as “‘There are also religious groups who fast and that is not psychopathology.'” The woman’s lawyer commented, “‘Imagine telling someone with breast cancer to try harder.'”

Mental health parity looks like it’s finally about to happen. If enacted, it’ll help 114 million Americans, but cost less than 1 percent of the total healthcare expenditure under the ACA. When President Clinton enacted parity for federal employees’ health plans, it actually ended up saving the government money. Parity makes good economic, medical, and human sense.

Someday soon, dear author, your autistic kids will be able to get the help they need without a major fight. The only obstacle to them unlocking their full potential will be you. When they get around you–and they WILL get around you–you’ll be the only one left who needs mental help. Won’t you be grateful for good mental health coverage so you can get over your poisonous, miserable ideas about parenting?

Feb 5, 2013 - Psychology    5 Comments

Forget Forgiveness

I’m an excellent audience. I listen attentively. I nod agreement, I shake my head in reproof. I gasp, I groan, I giggle. I smile my encouragement throughout, and applaud heartily at the end. If every listener were like me, speech classes wouldn’t be nearly so dreadful.

But I walked out on a sermon at church this Sunday.

The speaker was a very nice man, visiting the church while our pastor was doing a guest stint for another congregation. He worked very hard to be engaging, though I felt like Google and Bartlett’s Familiar Quotations should’ve been given sponsorship ads. But when he started spouting tired nostrums about why it was a moral imperative for everyone to practice forgiveness to be a good person, I couldn’t take it. (I did my very best to look like I was on a mission, rather than just marching out down the main aisle in a huff.)

And just what provoking topic stirred me so strongly I couldn’t sit still?

Forgiveness.

Yeah, you read that right. Forgiveness is a huge hot-button issue for me. I have many of the finer feelings: love for my fellow humans, compassion, empathy, helpfulness. I’d like to think I’m an honorable, honest, and generally decent person.

But forgiveness is vastly overrated.

Much of my resistance comes from my wide contrarian streak. When a person is hurt or abused, modern society tells that person that they can’t heal, can’t be whole, unless they forgive the abuser. There are no allowances made for whether the injury was accidental or intentional. The pressure to forgive begins almost immediately. And nothing irks me more than being told I “can’t do” something.

Forgiveness isn’t even just for social equilibrium or a restorative justice system to function–because heavens know we don’t have either of those. No, people are told they must forgive to purge the poisons of trauma and grief, lest they irreversibly damage the body and soul. Psychologists have published dozens of studies* to demonstrate that forgiveness has an impact on physical and mental health. Whole legions of therapists and motivational speakers have built an industry on wildly cathartic activities to free people from past wrongs and the harm they continue to inflict.

In theory, none of these are bad things. Holding grudges isn’t healthy in any sense of the word, and sometimes a good crying jag or public exorcism of wrongs is the best cure available. I’m certainly not advocating grinding every axe by the saturnine light, or keeping extensive lists with titles like “People I Will Not Warn About The Impending Invasion” (though that can be a satisfying short-term exercise).

But the pressure that society puts on people to forgive and forget wrongs small and great gets internalized, and if you can’t see your way to forgiving the guilty party, then you’re left to wonder what’s wrong with you. A person who can’t forgive is treated like our society currently treats a smoker– as an immature person who indulges a destructive habit out of spiteful pleasure or addiction.

I’d like to see a more nuanced discussion of what’s needed and what’s healthy in the wake of trauma and heartache. In my case, I draw a bright line between “letting go” and “forgiving.” We all let dozens of daily slights pass away after a moment of tooth-grinding and curse-muttering. A realistic person recognizes just how little they can control in their world, least of all their human neighbors’ actions and feelings. When you can’t let go, you’re hooked as securely as a fish on a line. The Buddhists have a word for this: shenpa; the Western Buddhist nun Pema Chodron has a wonderful series of lectures on how to get and stay off that hook (here’s just an excerpt). Ironically, some people don’t feel that criminals and other wrongdoers deserve forgiveness because it “lets them off the hook,” when it’s not uncommon for the injured one to be far more firmly hooked than the injurer.

I’m not saying that “forgiveness” and “absolution” are the same thing, either. Forgiveness doesn’t require you to forego an admission of guilt and responsibility from the person who committed the wrongful act. Taking responsibility for your actions is integral to any mutual healing and restorative process, not to mention every 12-step program out there.

So it’s right and good for me to let the past go, but my forgiveness is a gift. It’s mine to give or not, and I’m not harming anyone–least of all myself–by choosing not to bestow that gift on someone who hasn’t shown the slightest interest in taking responsibility or making amends for the harm that was done to me or my loved ones. I’m not giving myself fibromyalgia or depression or cancer by choosing to see things this way. I’m not preventing my wrongdoers the chance to move on with their lives, and I’m not stuck in the past myself. I’m not waiting for anyone to earn my forgiveness, either–in fact, no one can earn it.

So in the comfort you offer anyone who’s been hurt (including yourself), on whatever scale, don’t tell them that they need to forgive. Nobody needs to forgive to be whole, and we need to learn to be able to make amends and move on without having been forgiven for our own mistakes. Those who are hurt don’t feel control over much of their lives, so don’t insist on forgiveness for anyone’s “good.” The best gifts, both given and received, are the ones that are neither required nor expected, and those in pain need them the most.

* From the most cursory Google search, here’s one from doctors, therapists, religious leaders, and Oprah, for cryin’ out loud.

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