“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.)
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.
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?
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…)
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?
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“!)
Happy Fourth of July from one of the 1 in 5. Which 1 in 5? Well, probably not the one you are immediately thinking. Yes, I am one of the 1 in 5 Americans who experience mental illness in a given year. I’m also one of the almost 1 in 3 Americans living with multiple chronic conditions (and one of the 30 million of us living with five or more diagnoses!). However, I’m talking today about being one of the 1 in 5 Americans who have gone to a protest since 2016.
Our country was founded on ideas of Life, Liberty and the Pursuit of Happiness. Those are being denied to too many of our countrymen, including members of my own family. I believe it is patriotic to hold our leaders accountable for being the country we claim to be. My advocacy has taken place in intimate courtrooms and on huge street corners. Because I am, however, also one of those other 1 in 5s and one 1 in 3s, protesting isn’t always the most straightforward thing. Thus, this Fourth of July, I thought I’d post about how I have pulled off attending protests with ADHD, C-PTSD, social anxiety, depression, migraines, dysautonomia, Ehlers-Danlos Syndrome, IBS and just the general B.S. that – while they aren’t evil incarnate like the Republican leaders willingly setting Americans up for injury or death by dismantling our social safety net – even the well-intentioned Progressives who arrange protests are still often so very clueless about how to make protests inclusive for differently abled Americans.
Thus, I present Lavender’s Fourth of July Guide to Protesting as a Spoonie
You’ve probably already picked up on that by now, but just in case you haven’t, telling you my Partner and I have been eagerly anticipating the Pokemon Go Community Day with abundant tyranitars for weeks now probably confirms it.
Today was a rare good day. We went to one of the biggest parks in our city. We each managed to collect enough candy to evolve multiple tyranitars, and we participated in some rare legendary raids with enough people to actually win (even though we *cough* don’t have enough friends to field a team outside of these community days due to *cough cough* social anxiety). We both even managed to get high-level shiny tyranitars to evolve. (It seems only fitting that someone with ADHD – stereotyped as “ooh, shiny” – should need shiny pokemon). My spoons did give out before my phone battery and the event did, but with appropriate planning for water, meds, rest breaks, shade and cooling aids, I lasted longer than I expected to. The heat and sun weren’t unbearable, and we stopped for burgers and ice cream sandwiches in the A/C when I needed to rest.
*CW: oblique references to intense subject matter, but without details.
The human brain – especially the ADHD brain – has a way of latching on to the most inane of details. It dutifully encodes what the original package writing was on the box of records carried into the courtroom itself. It encodes the original sticker price of the random hardcopy book purchased in a vain attempt at “distraction” from it all.
It immediately calls to mind the two right shoes accidentally brought by the Partner instead of one complete set, necessitating a last minute scramble to find a replacement pair, and it recites the same lame attempts at humor that at least he was doubly in the right instead of the wrong without missing a beat.
It recalls every minute of the three-hour wait for pizza the night before – really, does the whole of the 9th Circle of Hell have to order pizza at the same time on the same random night? – and the raiding of the hotel’s snack bar during the wait. It readily embraces the fact that cheez whiz is a thing in the Midwest and that it might actually be a dysautonomiac’s perfect food. (Four crackers with cheez whiz can literally top salt pills for raw salt content. The brain won’t soon forget that…)
The human brain can also dutifully remember all the relevant facts of the situation that brought it to Hell and where the injustices lie. It can never forget them, in fact, as even in sleep it will remember the things it’s experienced these past few months. It can remember clever lines from our counsel – though only with the help of its owner’s honed skill of taking accurate notes even while feeling thoroughly numbed out or overwhelmed by the enormity of what this state permits in ignoring their own regulations and allowing things to get this bad. It can remember the specific beaded bracelet it directed its owner to chose for the day and why it chose it, and the flavor of the Gatorade it instructed the arms to raise up to the mouth to drink before it signaled that same mouth to open up and speak.
It can remember being told its owner did a good job in her testimony afterward: that the raw anger she displayed (contained within court-appropriate voice and following proper protocols, of course) as she spit out the rights violations both in the original situation and in the posthoc cover-ups was probably more convincing than anything she specifically articulated. It can remember that it supposedly conveyed “wronged” in a tone that bald facts alone, sadly, could never hope to match, because facts don’t really matter in these situations. Appearances matter far more.
The human brain can even remember that it did actually prevail that day. (Though, it would immediately remember not to get too congratulatory about one “victory.” It remembers this is a complex situation, and there is more yet to address before all is said and done. And, sadly, it remembers from long experience that even if everything were to go “doubly right” the entire rest of the way, it would still only be addressing prior wrongs. It wouldn’t be making a dent in the larger system that sustains these kinds of wrongs with immutable indifference and laxity. The human brain can remember what it is like to know it has only put another band-aid on a gaping wound.)
The human brain can remember many things, and it can imagine and plan for so many more. It’s funny, then, that it can’t seem to be bothered to allow its owner to truly remember much of her actual testimony itself, even while it remembers the preparation and the debriefing. Oh, and her dinner.
The human brain, it turns out, is equally great at filtering out as it is at taking in. It has a mind of its own, and it wields that power with the conviction that it knows better than its owner what she is strong enough to remember and what is better for it to quietly disperse into vague impressions.
Oh, an owner might argue that her own testimony should rank a bit higher in the priority list than cold pizza, but that’s the frustrating thing about the human brain’s algorithm. Cold pizza? Frustrating, yes, but it’s logical and vaguely predictable and fits within an ordered world. The brain likes safe, predictable worlds, even when they are predictably frustrating. That can make the cut.
Testifying? Well, that requires not just reliving all the fear and horror that went into experiencing the situation originally, but adding some new on top, because “justice” is not a word the brain ever associated with the 9th Circle of Hell. Testifying is confronting the illogical, the inexplicable and the disordered. Testifying is confronting that the world isn’t safe, and the logical brain thinks it is most logical to shield its owner from that world as best it can.
The human brain is, admittedly, a bit confused as to why there isn’t a surgeon general’s warning “for those with diagnosed autonomic nervous system dysfunction only” printed on every can of cheez whiz, but it can choose to remember cheez whiz without needing to understand or, frankly care why. It can’t choose to let its owner remember her testimony without risking her caring too much – or worse, numbing to the point of not caring and risking becoming no better than those she fights against. So, rather than trust her coping skills it filters those bits right out. It files such things away in a special category called “trauma memories” for her own protection.
The human brain is the most biologically intricate piece of machinery on the planet, and all those millions of years of evolution have led it to an algorithmically optimal solution for handling trauma. Until the world becomes a much safer and saner place than it is today, the safest bet, it believes, is to offer its owner only cheez whiz for brains.
There is an inherent contradiction that I have noticed in a lot of workbooks, apps, and other tools for mental and/or physical health. The tools themselves require a tremendous amount of attention to detail, dedication and memory for recording precise events at precise times. If those things were intuitive for me, I wouldn’t need those tracking and reminder apps in the first place!
It’s a great idea – in theory – to record every time I feel triggered, depressed, light-headed or aching, then to write down which techniques I tried to address the problem(s) with a corresponding 1-5 Likert scale rating of how much symptom reduction I obtained from them. I’m a data nerd by nature, but I also have ADHD. I need the tracking to be easy to do, work in multiple environments, and to provide handy visual data aggregations to make sense of the trends. I create those types of data visualizations every day for my job, but I do not have the time or spoons to take on a second job doing my day job again on my own time for my own health! If someone wants to pay me to create the world’s most perfect health tracking report, great. Until then, I just want technology to do it for me!