Meteorological Misanthropy #4: All I want for Christmas…

is to look at your two front teeth…

…or your nose…or your ear…or behind you.

Basically anywhere but at your eyes.

Because, yes, I am one of those neurodiverse girls for whom direct eye contact for extended periods of time is actually physically uncomfortable. I’m also one of those neurodiverse girls who has never fit into the office cliques, so I haven’t had too much trouble maintaining two of the more commonly known forms of neurodiverse masking: 1) maintaining that eye contact anyway for as long as it takes to make the limited amount of small talk that people typically want to engage in with me and 2) wrapping up a request for office accommodations in Silicon Valley speak about encouraging creativity by having fidget toys around or otherwise asking for standard neurodiverse accommodations without actually calling them that.

Well, okay, actually, I’ve had a lot of trouble with the second one. Because the Bully-in-my-Brain hates me and tells me that if I ever ask for something outside the office norm, I’m going to draw even more negative attention to myself than even my usual complete failure to observe standard turn-taking protocols (despite years of trying to mask) would normally warrant on its own.

I’ve been saying for months that I am going to share the story of how I “unmasked” at work. I wrote a whole blog post (now worthless) about the moment wherein I actually requested to not work in a shared office because open offices are the bane of the neurodiverse sensory existence. I told my new boss at one of our first one-on-one meetings – wherein he pointed out my continuing failure to be able to turn-take – that I was “neurodiverse” and it was a thing I couldn’t help. That moment was a watershed moment for me.

But, it turns out that, while I’m generally “all or none,” sometimes my “all” is someone else’s “none.” I was so wrapped up in the enormity back in summer of even saying the words “neurodiverse” out loud that I forgot that the vast majority of neurotypicals have absolutely no clue what that word means. And, I was so wrapped up in the enormity of saying those words that I, well, failed to think to explain it. My boss has been under the impression for the past few months – based presumably upon common exposure to mental health from media – that “neurodiverse” is code for “I have an anxiety disorder.” That’s…not exactly untrue. But, that’s less than the half of it.

To his credit, he actually took my “anxiety disorder” reasonably in stride. I have a tiny closet of an office, but it is my own office, while everyone else shares. We’ve come up with a gentle codes for “you are rambling in this meeting and I need you to give space for the people we are working with to speak.” His executive assistant thoughtfully asked me if I would need an accessible room at our work retreat. (Yes, yes I would. Retreat activities go from 9am until 9pm for two days straight. That’s a lot of spoons, and having a chair and a bar to hold on to so I won’t faint in the shower starts the day off right.) My coworkers come and voluntarily socialize with me in my offfice.

Oh, right. Crap. Being vaguely accepted at work instead of my past history of being the weirdo data girl in the corner of the open office or so unfit for human company I got exiled to my own room means that people come and talk to me. And, that means that the door to that tiny office that I so bravely asked for as a sensory safety net has been staying open – defeating its purpose entirely – for the past few months because now I feel like “holy crap, I vaguely fit in and I’ve never had that before so I have to keep it that way.”

Keeping it that way – especially when you failed to explain neurodiversity at all but thought you did – is actually exhausting. Full-scale ‘peopling’ is actually pretty damn exhausting. Two days of a retreat where you do “bonding” activities and then people want to hang out and they actually invite you so you feel compelled to go is exhausting. Having another foot of snow dumped on the upstate retreat center you are all staying at on the second day to the point where there is legitimate talk that the group might be snowed in(!?!) is exhausting. The most terrifying words I have yet heard at my new office have been “there’s talk they might be closing the road out.” Give me tornadoes in the Northeast over that anyday!

Trying to maintain eye contact through all of that when you really just want to run back to your lovely accessible room (that at least you are staying in alone while the others share), put on white noise, read for a bit, then stare at the LED candle you brought to unwind at the end of the day is exhausting.

Hello, my name is Lavender, and I’m an irony magnet. When I think I’m genuinely unmasking, I’m actually only confusing things more because I forgot the details during the big reveal. When I think I’m not going to say anything during a literal team bonding activity about “getting to know someone behind the work mask,” I end up melting down over too much peopling instead. (Did I mention that a foot of snow was falling, I’d been making direct eye contact for two days straight, and I was feeling the enormity of potentially being snowed in during my weekend recoup time and having to do more of all of that instead of regaining my spoons?)

There’s a meme going around about therapy wherein the therapist asks, “And what do we do when…” some common mental health symptom (like we are feeling rejected) and the client says exactly what they shouldn’t do (like spending all their money to make themselves feel better.)

My version goes like this:

Therapist in Summer: “I think it might be healthy for you to explore being more open about accommodations that would help you be most productive at work and consider ways to allude to the true cause of some of those traits you keep fearing are going to get you fired. Start feeling out how this office approaches formal disclosure.”

Lavender in December to the entire office: “One thing you should know about me behind my work mask is that I’m still masking. I’m always masking. Like, yes, I know it sounds like a stereotype about the eye contact thing, but, no really, it’s painful and I’ve been doing it too much because you all seem nice and I want to be social even though I’m awkward. But, I also really just want to run back to my room right now and put up a sign that says ‘not unfriendly, just in sensory overwhelm. I’ll come out again in three hours.'”

And, thus did I learn that my boss only kind of/sort of understood what neurodiverse meant. I ended up having to awkardly explain it to everyone at once in layman’s terms, which is triggering considering what the ‘common’ labels for my neurodiverse diagnoses have led to in the 9th Circle of Hell. It hasn’t been that long since the retreat, but so far post true (not just in my own head) “unmasking” I’ve felt more comfortable in that I’ve felt like I can close my door. I’ve also simultaneously felt less comfortable in that I sort of accidentally made myself into a visible representative for a specific kind of “diversity.” The fact that I used the word “neurodiversity” for my diagnoses – which I chose personally because it is a way to counter the legacy of trauma and rejection from those diagnoses – kind of unintentionally bled into the broader discussion of “diversity” in general that most blue-state offices are having right now. That wasn’t my intention. I really was just trying to avoid using labels that are triggering to me from my past and to choose positive descriptors instead. But, for better or worse, I’m the only neurodiverse staff member. I also have a rare genetic chronic illness and high ACES to boot. And, because I’m all-or-none, I put those out there, too. It’s less socially awkward to disclose everything at once than over months, I hope?

If nobody represents, than another generation of neurodiverse kids is going to grow up with barbed praise at best and outright abuse at worse. But, being a visible, as myself, representative of “this is neurodiversity” at work is simultaneously less physically/mentally exhausting and more emotionally terrifying. What if I do it wrong? Also what if, as the Bully-in-my-Brain puts it, “You set up a false expectation of neurodiverse capabilities and then fail because of who you are yourself – not because of any neurodiversity – and unintentionally reinforce your work should never again hire an openly neurodiverse person for a management position?

I feel like I do need to “represent.” Offer what light you can and all that. But, it’s super awkward since “representing” at work involves…more peopling. It also involves figuring out how to speak about personal things at the right level of detail. Neurodiversity is not exactly known for reading the room and choosing the “right” level of detail…

The blog post below is from April 2018. A month and a half later the hair tie did snap. But, in April 2018 I was still masking by the skin of those teeth I would prefer to look at. So, I wrote a description of the toll continuing to do that was taking. I’ve been trying to explain neurodiversity at work post-retreat using more metaphorical language like that, vs. those intense life-or-death show downs I shared on my blog later in 2018 or my more recent 2019 “screw it, I’m embracing my own verbal stims because they make me happy” language. I’m trying to find the language to translate neurodiversity positively for neurotypicals. I vacillate, though, between feeling like even my attempt at NT-friendly “describe it with an impactful metaphor” language isn’t enough and that the metaphor, in and of itself, might still be a little too intense. Did I mention I have neurodiverse scope and focus issues when telling stories? Especially about the neurodiverse experience?

On the one hand, I want to make clear that, no, there really are serious consequences for mental health and safety from forcing the neurodiverse to mask whenever they interact with others. But, on the other hand, I can’t exactly just default to sharing unfiltered anecdotes from my own life as illustrative examples. Bringing the 9th Circle of Hell and the details of my ACES into things is the advocacy equivalent of forcing my coworkers storm chasing when they merely expressed an interest in watching the movie Twister.

Any suggestions for how to “represent”? Because, I promised to tell a story about how I unmasked. And it only took me five months after I first promised to do so. Or to actually take my therapist’s advice about “exploring disclosing…”

It also only took me a year and eight months + one pretty dramatic “snap” in mid-2018 to finally take my therapist’s advice from below about re-connecting to my body enough to even be able to say that I experience “sensory overwhelm” to myself (let alone an entire office.)

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4-14-18

My therapist pushed me at our last session to describe where the feelings that preclude dissociation originate. Hasn’t she figured out yet that the wires connecting my brain to the rest of my nervous system were cut so long ago that if I had any clue what was going on behind my own mask anymore I wouldn’t be paying her to re-wire me?

I am not in touch with my body’s signals. That’s the whole point of masking. I trained my own natural sensory tendencies out of myself so long ago you could probably transfer my consciousness to a computer and I wouldn’t notice much difference. I no longer know if I’m feeling sensory overwhelm or what my own sensory-soothing behaviors should be. I don’t know what body signals precede hypoarousal, aka dissocation. And, I don’t really do hyperarousal  – aka panic attack or meltdown – anymore because I conditioned myself out of them long ago.

I made it through a PhD defense and the 9th Circle of Hell in the same week that way before. I don’t see how I’m going to suddenly learn to face my bully-of-a-boss’s fury or the 9th Circle of Hell’s anything differently this time. And, frankly, I’m not entirely sure why I should want to face them differently this time. Maybe unmasking and/or re-wiring brain to body will be a luxury I’ll have at some unknowable future date in some unknowable future society where I can be openly “somatic” without consequence. But, in the here-and-now I feel like I should be trying to shore up that mask that society requires and be receiving therapy tips on how to pretend to be even more normal instead of deliberately deconstructing it.

My therapist eventually gave up on getting me to use somatic language and asked me to describe how I feel using anything available. I decided on a hair-tie. Those generic black elastic ones that come in packs of twenty because they aren’t sturdily constructed.

Sometimes, elastic hair ties break quickly and completely. They visibly and irrevocably snap. That to me would be a meltdown, or a panic attack. That, to me, would be the kind of “somatic sensation” she is looking for me to describe – but I don’t think I have anymore.

That’s not how I interface with the world anymore. I’ve learned it is safer not to visibly snap. I hope I don’t sound like I’m blaming those who do snap. I’m not. I promise. I understand that how we each break isn’t a choice. It’s a function of how each individual nervous system and each individual trauma shapes each individual individual. I don’t have any less respect for hair ties that snap. I’m not even any more functional for being a hair tie that doesn’t snap. I’m just not that type of broken hair tie. If my therapist is looking for me to describe that, she’s going to be forever disappointed.

I snipped the wires between brain and body and then overextended myself long ago to the point that I’m effectively as unfunctional as if I had just snapped, but I still look functional on the outside. In short, I learned to mask (mostly.)

Have you ever seen an elastic hair tie fail slowly? Not snap, but just stretch progressively over time until the elastic itself is gone, but it still retains the shape of a hair tie? That’s the heart of dissociation. That’s probably the heart of masking itself, if I think about it.

An over-stretched ribbon of black cloth is not a hair tie anymore. But, it can function as one in a pinch. It can still technically tie back hair. You can loop it around a ponytail and wind it tighter and tighter and tighter until you have forced it to function as a ponytail holder again through blunt force. And, if you become skilled enough at using that no-longer-a-hair-tie as a pretend hair tie, you can almost convince yourself – and if you are lucky others – that it still is one.

That’s me. That’s my current mental health. Still barely functional because nothing else is available, but not what I’d ever reach for if anything else was available. That’s what masking and dissociation have done for me. They have sort-of worked as hair ties when nothing else has been available while progressively wearing out.

My therapist asked me why I want to shore up my worn-out hair tie – why I want to keep using a stretched out elastic instead of just getting a new one. I told her because I’ve gotten so used to forcing worn-out elastics into passable hair ties by now that I’ve forgotten how to use real ones. If I ever actually had access to a proper hair tie my fear is that I’d still reflexively try to force loop it to the point that I would get hurt when the “good” elastic couldn’t take the pressure and eventually snapped…

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Need a recap of anything I’m talking about in any post? Check out my Glossary of Terms