Improv #12: Funny You Should Mention That…

Image text: “Pretending to be normal, doing your best to act like you’re ok, day after day, week after week, month after month, it’s just so exhausting” over a woman crying.

For anyone wondering, the Thanksgiving turkey turned out great. Cooking a turkey is like cooking a whole chicken. If you want to practice before next year’s big day, cook whole chickens. Then, do the same thing on Turkey Day for about 3-4 times as long. (Also, turkey enchilada stew and buffalo turkey sandwiches feel much more like a “change” from a week of all-turkey, all-the-time than the standard turkey pot pie and stews that are usually recommended.)

Unfortunately, my Partner sent our only photos to his parents when he last spoke to them. Now there’s a remote chance they could someday identify me as the author of this blog if I recycled those pictures. I used an herbed-butter rub and baked the bird with roasted vegetables for aromatics. The pictures, through the magic of Google image search, could theoretically be vaguely identifiable. Every picture of the same natural feature looks about the same. (I did some digging to prove that to myself before posting Iceland pics last year.) As long as I pick out different photos for his parents and my blog, I can share travel photos here and still keep my worlds separate. But, I can never share the same photos, or my worlds might collide, right?

Not really. All Thanksgiving turkeys also look about the same, so there’s nothing truly stopping me from posting the same pictures here except my ingrained need to keep my worlds separate. There’s nothing except my ingrained need to control to whom and in what situations I reveal just how not normal I am. I am still masking in most of my life, and, though it sucks, I don’t think I’d know how to fully unmask in daily life if I tried. Unmasking hasn’t been safe in childhood, in my workplace and in advocating for my neurodiverse sibling within a regressive, systemically abusive state.

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Candy Canes

Image: Pikachu in a Santa Hat from Pokemon Go.

Pokemon Go had a super event this weekend, in which all their previous special events were combined. Increased spawn rates for all prior Community Day Pokemon were available all weekend, but, within the weekend, there was one three-hour period wherein all the prior Community Day event bonuses (including double candy and stardust) were also available at once.

Because it is winter, everyone is sick, and I’m still destined to catch every acute illness that I am ever exposed to, I was getting over being sick and the concomitant flare this weekend. I was aware of the spoon cost to participate fully, but self-care sometimes means caring for my mental health even when it costs my physical health.

I’ve considered mobility aids before. There’s probably some residual feeling that I’m a pretender who doesn’t deserve one wrapped into my prior avoidance. It’s hard to get over a lifetime of ignoring your own needs because someone else has it worse. Mostly, though, I haven’t used one because I haven’t seen how it would help.

All the canes I’ve ever been exposed to are sturdy, wooden things that have to be held onto like an umbrella.

Where’s Whoopsie #16: Build Me Up, Butterball

“For pounds up to nine,” Peapod’s flat fee’s pretty fine
But they lied, they substituted and then (Ba-dah-dah)
Showed up from the store, a turkey fed many times more
It’s not them, will I let us down in brine? (Hey, hey, hey)

Maybe, baby, try to find (Hey, hey, hey)
Dethaw time and I’ll make us happy (Hey, hey, hey)
I’ll be home, I’ll be beside the stove waiting on food
Ooh, ooh

Why do you build me up (Build me up)
Butterball, baby
Just to give me dread? (Give me dread)
And mess with my head?
And then, worst of all (Worst of all)
The bully calls, baby
“You can’t keep us fed” (Keep us fed)
But it’s quite misled
I trust us (I trust us)
And the Internet darling
On prep, I will soon make a start
So build me up (Build me up)
Butterball, don’t break my heart

It’s true, we’re just two, but we could eat for many days more
If you’d just turn out right (Ba-dah-dah)
Although you’re quite rare, I am willing to dare just to gorge
Oh, let me feed us so! (Hey, hey, hey)

Maybe, baby, try to find (Hey, hey, hey)
Cooking time and I’ll make us happy (Hey, hey, hey)
I’ll be home, I’ll be beside the stove waiting to chew
Ooh, ooh

Why do you build me up (Build me up)
Butterball, baby
Just to lay breast down? (Lay breast down)
On plates all round
And then, worst of all (Worst of all)
The sides and all, baby
Why can’t you be alone (be alone)?
But I’ll make them too
I’ll eat you (I’ll eat you)
And everything, darling
Of all, I’ll eat more than my part
If you build me up (Build me up)
Butterball, don’t break my heart

I-I-I want you on Thanksgiving Day, baby
That’s why you were put in our cart
So build me up (Build me up)
Butterball, don’t break my heart

Top Ten Things I Hate About Top Ten Posts

I went away to a place that was not the 9th Circle of Hell this past long weekend with my partner. It was just a long-weekend getaway, and – given that my Partner had literally been to Hell the week before – it doesn’t quite imply everything is fine. However, it was enough of a mental reset for me that I don’t want to think or write about that other place if I can avoid it for a week.

I wasn’t sure at first what else to write about. The 9th Circle of Hell and the soon-to-be-introduced-on-my-blog replacement for the Bedbug Motel still occupy entirely too much of my brain space. It was harder at first to not think of the 9th Circle of Hell than even to not think of an elephant. Until suddenly, I realized…

Improv #10: Seven Things for Self-Care

*Knock knock*

“Who’s there?”

“Seven”

“Seven Who?”

“Seven Eleven…”

“Dude, you can’t fool me. I know there’s only seven of you. When I’m seeing eleven then maybe I’ll believe I’m as think as my friends drunk I am. Now bring me my black coffee and tylenol delivery stat!”

There’s an Improv game called Five Things that seems to be fairly universal. The basic gist is that you sing a little song and then ask the person next to you on the spot to come up with five (or seven, or eleven or whatever arbitrary number) of a certain category. It’s a warm-up game to get you thinking in odd ways.

It’s also a song that will lodge itself into your brain forever. If you don’t believe me, watch here. You get bonus points if you stay on beat and/or come up with wittier or more advanced versions for your answers. For instance, to start you might ask for five types of vegetables and only be able to think of “potatoes, carrots, peas, turnips, and celery.” Later on, you might get a little more inventive: “Mr. Potatohead, Veggie Tales, Carrot Top, The Jolly Green Giant and Sweet Pea.”

I do not seem to have self-care lodged in my brain in the same way. Between the double-vision fiasco, being mentally frozen in the 9th Circle of Hell and general ADHDness, I have been kind of terrible about my self-care this past month. (Don’t worry! No real alcohol or mind-altering substances were involved in my lack of self-care. Line games are just things that have also become permanently lodged my brain.)

Eye Rate

Ehlers-Danlos is a systemic disorder. That clearly means it can affect any part of our body that either has collagen or relies on collagen. This is rather unfortunate, given that about 30% of the raw protein content in our bodies is made up of collagen. Collagen is in everything: our stomachs, our skin, our ligaments, our muscles, our blood vessels, and even in our hair. While I don’t think this quite means we can literally say our hair hurts, it does seem to mean we can literally tear our hair out over it. I somehow manage to both grow ridiculously thick hair and lose so much of it that my Partner claims he could build another me from what gets stuck in our drain catcher. Others lose as much as I do, but without the thickness to begin with. They get to deal with visible hair loss as a result.

Another place that collagen is found is in the eyes. My family’s genetically atrocious vision and need for prism in our glasses are quite likely manifestations of EDS. I learned this the hard way this week.

Houston, We Have a Problem

That problem is, apparently, that I sound like an astronaut communicating through a crinkly 1960s com unit from the Moon – while my space suit springs a slow leak and I rapidly lose oxygen.

Did I ever mention that social anxiety makes absolutely no sense? I may be a bit underconfident when I perform on stage, but I at least can speak in multiple sentences without choking, in either the figurative or the literal sense.

This is not the case with job interviews.

Despite the protracted visit to Hell this month, I did manage to get off a small batch of applications to potential data science positions. This is a reasonable accomplishment, as these applications, even outside of academia, are not short. There’s no simple “slightly modify your resume, change a paragraph of a cover letter” and go. Each one requires references up front, transcripts, lists of published papers, and other odds and ends to create a complete portfolio. Each one has its own specific hoops** to jump through. Some I have seen even want samples of publicly available code on GitHub! We don’t even really use resumes. It’s all C.V.s. Oh, and I’m pretty much mentally broken right now and my typical protective mental walls have been dangerously breached by all the workplace bullying and 9th Circle of Hell full-scale substantiated systemic abuse.

All of those lodestones aside, I was able to complete one stage 1 phone interview. One of the rare legitimate benefits of ADHD is that if you truly enjoy what you do – and I do, just not always the workplace culture that surrounds it – hyperfocus can be harnessed to your favor. You can, for instance, pull off reading everything a lab has published in the past five years, plus review what consulting gigs and patents have been pursued in tandem, the work of their external research partners, and even their potential security of grant and/or venture capital sources. (I’m pretty sure a big part of the systemic breakdown of the current workplace culture is ultimately funding-related self-protective offensive attacks. I’d like some indication I’d be with a more established, stable entity instead of out of the frying pan and into the fire.)

There was nothing about that organization I didn’t know, and I had really carefully thought-out answers for the standard interview questions and what my background could contribute. Those answers were even good!

I managed to answer with great content, but the rushed breathiness of someone who basically was fighting a potential panic attack the entire time. Have you ever noticed how sometimes you can’t take deep breaths to calm anxiety, even if you try? You get physically stuck in a kind of hyperventilation. If I had forced deeper breaths (I briefly experimented while on mute), I risked going into a sort of coughing/retching fit. Being somewhat rushed and breathy – but not dry heaving – seemed better.

So, that sucks. I’m pretty sure in the past I’ve sounded like I speak a mile a minute and likely talked over people (because ADHD), but I at least haven’t sounded like I exhaust myself with my talking. Now, I seem to have the “don’t overwhelm with too much content too quickly” more under control, yet I get no benefit because some form of anxiety + idiotic autonomic nervous system functioning literally starved my brain of oxygen while I spoke! Did I mention I wasn’t actually – at least so I thought – even that anxious? My anxiety over this interview was nothing compared to the traumatic meetings I’ve had recently with the 9th Circle of Hell. My answers were good. I felt confident in them. If I had managed to speak like someone breathing the air around her instead of from deep inside a malfunctioning space suit, I’d even have said I felt pretty confident I’d get a second interview. But, apparently, when giving interviews after a lifetime of Hell, the devil is still in the delivery.

Has anyone else had that experience? You actually feel confident in what you want to say, but your lungs seize up and you can barely draw the breath to say it anyway? Any tips? This is kind of a scary new expression of my anxiety. Everything about my stress responses lately have been new and scary.

** For anyone who is going to suggest that perhaps I could actually make good on my claims about using statistics for social justice by applying to an advocacy organization, I have bad news. 1) There really aren’t a lot of grass-roots mental health or chronic illness groups that employ data geeks. 2) I am, still, a data scientist not a computer engineer by training, so sys admin positions don’t quite fit. 3) The ones that do have openings seem to want you to have already worked in advocacy. I saw one that actually seemed cool, but they explicitly stated their technical staff need to be “camera ready” to give solo press conferences about findings. Because even the data staff need to be PR-savvy, I guess the socially anxious aren’t the target mental illness demographic for mental illness advocacy by default? I still like the idea, but it seems like breaking into the world of making the world a better place is surprisingly complicated?

Blog Awards Series #2: Veteran of the Blog Awards

Back in college, I was an RPG gamer. I didn’t actually start with D&D, though. I started with a few more “freeform” type systems where I could create my character with all sorts of attributes that don’t fit into the standard D&D class system. I’ll be honest, D&D felt kind of limited after having freeform as my introduction to gaming. (If anyone ever wants to run an online game in some weird indie system, I’d totally join! I’d just be years worth of rusty at it!)

One of those more open-world systems had a trait you could offer your characters called “Weirdness Magnet.” It was exactly what it sounded like: weird things would just keep happening around your character. I remember the description was something akin to “If there was exactly one talking alien dog that would ever visit Earth, they would immediately stroll up and say hi to your character.”

I created a character at one point who had a variant of that trait, who was an “Irony Magnet.” Whatever the most ironic possible consequences of what they stated would come to pass. I’m feeling a little like an irony magnet – and not just in improv – myself today.

I talked about the kind of Little List that I usually think about – or, rather try not to think about – in my last set of blog award questions with regards to the 9th Circle of Hell. I legitimately did not give any mental attention to that other type of list that also exists, AKA the list of registered abusers with substantiated claims against them who aren’t allowed to work with the vulnerable.

Those lists haven’t been of much help in most of my dealings with the 9th Circle of Hell. Even when I could substantiate the abuse itself, the system protects the perpetrators to the degree it is virtually impossible to pin the action on the specific person accountable, which makes the substantiated allegation itself worthless, for all intents and purposes, since no one pays for the crime that is documented. Assuming that I ever did hold someone accountable, the list, I assumed, would be useless, as providers also don’t bother to actually do the background checks to determine they are employing someone who isn’t allowed to work there.

Well, that generally useless list has some additional names on it, and I’m the reason they are there. And, based on the date of the official letter, they may have been put there while I was studiously avoiding thinking about that other kind of list in my last blog award. Irony magnet, thy name is Lavender…

I feel like I should feel more victorious over this. I especially feel like maybe I should feel more victorious because, if a couple of others we’re working with are to be believed, further investigations are in the works and perhaps they will lead to more far-reaching actions. (I won’t say any more than that, because, well, I don’t want to be the idiot that jeopardizes future outcomes by speaking about them prematurely. I will only allude to what has been substantiated.) Yet, as I’ve mentioned before, there is a persistent habit of not bothering to check the lists before hiring decisions, so does a list that isn’t enforced really exist at all? Also, I’m honestly just exhausted. I’ve been dealing with this for longer than I’ve been a legal adult, and I have lived the brunt of so much crap over the years that any tiny victory feels irrelevant in the face of how broken the overall system remains. Hell, I’m doing any entire light-hearted series of “get to know me” questions just in the hope that there will still be a me left over after this journey through Hell ends. Years of trauma take a toll.

I said this to my Partner, and he asked if my blog award series included any questions about songs that represent my life. (Another fun fact: I used to assign my RPG characters songs that would help coalesce their personalities when I designed new characters.) If any do ask, he told me that I should include the song Veteran of the Psychic Wars as my song for my backstory, both with my family of origin and with the broader 9th Circle of Hell. I have to say, thinking about that other list and the new names on it, I see the applicability. My primary response to the new names on the list – when I can manage to muster anything beyond just psychic numbing – is just to agree that the line “wounds are all I’m made of…did I hear you say that this is victory?” certainly describes how I feel about this “victory.”

Still – given the irony magnet that my first set of answers ended up affording – let’s see if I can find a way to answer these next set of questions with something akin to me winning the lottery, eh? Or maybe just winning a free trip somewhere on my bucket list, since I’ve written about travel more often than I’ve written about little lists and, to date, no conveniently opportunities to cross things off have shown up. (I’d live with whatever irony came along with the trip just to have a free trip, at least so long as my irony magnet didn’t somehow lead to me winning that trip from the 9th Circle of Hell state tourism board…)

Today’s Questions Courtesy of Alison at The Unabashed Autist

Fully Reversing My (Claim to) Mental Illness?

Do these two Pinterest pins seem equivalent to you?

I’m going to ignore for a moment the implication by a UK PTSD charity that PTSD is “fully reversible” with CBT and EMDR. I’ve tried both, and I’m still waiting for that reversal. (Of course, given how many unique traumas the 9th Circle of Hell as dumped on my brain, including these past two months, how would I know if one ’bout’ of PTSD had ever cleared up before another re-inserted itself?!)

I want to point out, instead, the claim on the left that “PTSD is NOT a Mental Illness.”

I’d like to claim I’ve been doing something really productive with my not-FMLA. However, all I did Thursday was be kept up all night by nightmares preceding my most recent meeting with 9th Circle of Hell officials, then crash out after it and sleep for 15 hours. Apparently, my body thinks that “self-care” means hours of watching non-triggering reality television (think shows like Naked and Afraid where survivalists pit themselves against the elements or Wicked Tuna, where fishermen pit themselves against fish) and staring robotically at Pinterest at 3am when that reality television has been replaced by infomercials. My body thinks that “self-care” means not sleeping, then sleeping long enough to try and recoup six months of spoons at once after physical distress overwhelms mental distress. Would that spoons worked that way, body…

Pinterest really wants me to pin both images above. They keep showing up in my feed. I don’t have a particular problem with the image on the right. (I did read once that Healthy Place promotes some pseudo-scientific claims alongside their generally sensitive memes, though, so I’m still careful about anything they produce.) I do have a problem with the image on the left. Isn’t PTSD just mental illness resulting from self-protective mechanisms persisting so long after psychological (and physical, emotional, sexual and bullying, too!) abuse until they ultimately become maladaptive?

The definition of mental illness is a set of health conditions involving changes in emotion, thinking or behavior that cause distress and difficulties in functioning for an individual. While dissociation has occasionally been neuroprotective during the worst abuse, I haven’t found that being unable to speak while my boss yells at me as I watch the encounter from outside my body to be anything other than “distressing.” I also have yet to see how nightmares are a viable part of any coping strategy – even a maladaptive one – even during periods of active abuse. Abuse and the covering up of abuse have resulted in most-likely permanent changes to my brain that cause me significant distress and difficulties in functioning. That sounds like mental illness to me.

While I deeply hate that other people caused those changes by being abusive assholes (especially abusive assholes that have, too often, gotten away with it), I don’t see how the fact my brain changes were done to me somehow makes me superior to someone who is distressed and impaired in their functioning by endogenous Generalized Anxiety Disorder or Major Depressive Disorder. I don’t see how the fact that PTSD is, by definition, exogenous spares it from being a mental illness. The fact that advocacy groups would try so hard to suggest it does spare it gives off an unpleasant whiff of mental illness stigma. What is the purpose of going to great artistic lengths to convince others that PTSD isn’t a mental illness other than to distance it from that a thing that is somehow lesser, namely mental illness?

Messages in a Bottle #6: Cool as a Snowball in H#ll

From what I can tell, we briefly hit temperatures that were literally hotter than (the 9th Circle of) Hell this week. And, just as the Northeast might get a break from the insane heat wave that is gripping most of the country – for two days at least – I might be leaving it for another roundtrip to Hell. Argh. The 9th Circle of Hell additionally lives up its name by having always been unlivable in the summertime for someone growing up with undiagnosed Ehlers-Danlos Syndrome and the dysautonomia that likes to hitchhike.

I recently(ish) read two separate blog posts (by Narcoleptic Aspie and Crafts, Chronic Illness and Adulting) about how bizarre trying to use a Fitbit or another fitness tracker is for someone with a condition that includes autonomic nervous system dysfunction. Lavender from two years ago completely agrees with that sentiment.

I also discovered this random “journal” entry – not even written in my usual locked leather-bound journal because I was simply too out-of-it to hand-write anything – floating around in the flotsam and jetsam of my personal Dropbox.

The date of syncing of the post was late-July 2016, though given that my text notes sync to Dropbox only when I use wifi, not data, on my phone, the note itself could have been written on my phone anytime within a few weeks of that date. Out of curiosity, I went back and looked at my phone to see what Samsung Health recorded as my low heart rate at around 5:30am in July 2016. (Yes, this does mean my phone is over two years old, for anyone asking. I drop it constantly I’m not going to replace it every time a new model comes out just to shatter another screen!) I suspect this entry corresponds to a heart rate of 46 on July 12th, 2016. My recorded high for that month (156) also seems to have come at a time I marked myself as “at rest.”

It’s strange to think that if, on that date, I’d considered that I actually did have those extremes of heart rate while simply sitting inside in the A/C – and that it was my body, not my technology, that was broken – I might have been diagnosed at least a year earlier. But, of course, I assumed the technology just wasn’t that reliable. (Also, would that I could go back in time to a moment when the world wasn’t ending right now, as was the case two years ago! You know it’s a Messages in a Bottle when it contains that line. The world most certainly isn’t okay in “right now, right now“!)