Long Walks and Candlelight Zen-ers

I sometimes think my Partner missed his life’s calling as a therapist, but whenever I mention this to him he reminds me that the only “people” he wants to be observant of and “people” with on a regular basis are me (and maybe the cat, who is unofficially a “people,” too!)

As I’ve said before, my Partner was instrumental in helping me to identify that my “personal flaws” were really indications of ADHD, in obtaining my formal ADHD diagnosis (functioning as my “family” interview in lieu of my family of origin, who should never be trusted to speak on my behalf, ever) and also helping me come to terms with the idea that having ADHD, which is sometimes classified as a “learning disability,” doesn’t invalidate my elite school undergraduate degree or the grueling work I did to complete my thesis. In fact, we largely worked out that ADHD was even something to consider because he read an Atlantic article about an Ivy League-graduate female writing about her experiences, handed it to me, and went, “That’s you, and before you freak out, note the ADHD didn’t mean she didn’t graduate from a top tier university and work for a competitive magazine. So, it doesn’t mean you are stupid at all.”

He has never really stopped knowing me better than I know myself since that first insight. He worked out a lot of my personal trauma history from context clues before I ever felt comfortable sharing it (or even acknowledging to myself that those experiences “qualified” as trauma.) He also originally came up with many of my core grounding techniques. He’s the one who worked out, for instance, that stating the date and time isn’t as effective as one might think during a dissociative episode for someone who also has ADHD, as even when I am completely “in the present” I am often still completely obvious to the date and day! He’s the one who suggested instead simply saying, “You are here. This is now.” And – when I asked him in 2018 what the point was of reminding myself that it was the “here” and “now” (date non-specific because I wouldn’t have said any date in childhood, so if I’m saying anything at all, it’s already not childhood) when 2018 was so damn close to those other childhood and previous 9th Circle of Hell adult trauma memories that it felt indistinguishable – he is the one who calmly replied, “This year is shit. It’s 90% the same shit as the shit you’ve been through in the past. But, that makes it even more important that you remember that it is, at the same time, still 10% different shit. If you must live through current trauma, don’t torture yourself further by also reliving your past similar trauma all at once.” ADHD all-or-none non-linear conceptions of time do me no favors on that front.

He’s the one who came up with the idea of wearing beaded bracelets, keeping a reality journal, and recording my own “guided meditations” in safe, happy places to remind myself that happiness is possible when in the depths of Hell. I still fill out my reality journal daily. I still wear beaded bracelets and remind myself that, “You are here” and “This is now.” And, I still struggle with feeling triggered – without necessarily confusing whether I am actively safe for the moment – because traumaversaries are a thing.

Standard therapy for trigger management, dealing with emotional flashbacks and grounding bugs me for multiple reasons. The biggest reason tends to be it always starts from the assumption that a person is safe in their present. That was not the case for me in 2018, and it is not the case today for many others who are suffering from complex PTSD and/or dissociation while simultaneously living in poverty, chronically ill, of color in an intolerant neighborhood, disabled and/or still too young to live independently to escape their childhood abusers. It is entirely possible to have PTSD while still also being actively (re)traumatized.

Another thing that bugs me is that grounding techniques tend to be very one-size-fits-all. The same techniques are recommended whether a person is currently experiencing an active mental health crisis, engaging in day-to-day mental-health management, or “just” feeling a bit more triggered than normal because of a traumaversary. I don’t understand why therapists assume that engaging in the same things that grounded me in 2018 – the big guns of my mental health management – couldn’t actually re-trigger me back to those unpleasant memories of why I needed those big guns if I used them again in 2019 – especially if I’m trying to use them to stop thinking about 2018 to begin with.

Yes, my beaded bracelets were “new” in 2018 compared to prior crises, so they were helpful for grounding last year. And, yes, I’ve gotten used to wearing them, and they remain a useful societally acceptable wearable fidget in 2019. But – since I was wearing beaded bracelets on my worst days in 2018 as well as my best – they no longer quite distinguish between the 2018 “then” and “now.” I said, “You are here; this is now” in 2018 as well as in 2019. So, that too, can only remind me that (at least) I am no longer a child and that I have adult options – but it can’t distinguish this year from last year. My reality journal is great for identifying why I feel triggered in 2019 seemingly out of the blue, and it is great for day-to-day maintenance. But, it also isn’t enough by itself for a traumaversary. None of my daily maintenance tools by themselves are enough.

Yet, I simultaneously wouldn’t want to haul out my biggest guns – such as my personalized guided meditations – for anything other than a true crisis. I don’t need to be reminded that a place outside of Hell exists and that happiness exists in 2019 the way I did last year. I’m present enough, even when feeling floaty lately, to still know that I’m generally happy and that it’s weird that I’m feeling something in my body that doesn’t match my mind or my external circumstances. I just need a little boost because my nervous system sometimes decides to hijack that happy brain for a bit.

Most grounding techniques don’t seem to consider the different tiers of grounding-type interventions that might be required for different circumstances – or different years or times of years – at all. And – despite the years of therapy and all the many books on complex trauma, dissociation and social justice that I have read – in the end it still ended up being my Partner who realized that tiered interventions might be required in self-care, just like tiered interventions are common in acute care.

Continue reading “Long Walks and Candlelight Zen-ers”

Advertisements

Messages in a Bottle #14: If You’re a Poet and You Don’t Know It…

Traumaversaries are weird. I have learned that it is entirely possible for me to feel stressed, anxious, rejection sensitive and floaty for days with no overt understanding of why I am feeling this way – even throughout events that should otherwise be fun in present-day 2019 – because my subconscious mind still remembers what my conscious mind has chosen to forget.

In my conscious recollection, the first week of June will always suck, and I probably should additionally be wary of early July this year. July will mark the one-year anniversary of that casting off of my fragile sense of safety and my “here and now” to go on not-FMLA and dive again into the horrors of the past in seemingly endless present-day loop. In my conscious memory, I’m aware of these dates as potential “traumaversaries” (from both 2018 and accumulated triggers), and I wouldn’t have been surprised if I had had rough mental health episodes earlier this month. I plan to take extra care of myself in early July.

But, I was surprised by how quickly and painfully those old PTSD symptoms crept up on me these past few days because – as far as I understood – these middle couple of weeks of June were a relative period of quiescence in the general storm of 2018 (and the 9th Circle of Hell in general.) But, apparently, my body remembered what I, myself, did not. Because, after it became apparent I was struggling even in the midst of otherwise enjoyable events, I finally sucked it up and looked up what was happening this time last year.

Trauma memories can affect the subconscious mind (and body) as well as the conscious one, and reality journals don’t lie. This time last year, I had a particularly unmemorable (aka dissociative) day in which I had to take a call with the 9th Circle of Hell that was demeaning and demoralizing, and then be screamed at by my bully-of-a-boss for four hours afterward as further demoralization.

What was my offense that led to his hours-long recasting of every bit of work I had ever done for the company as worthless trash? Well, I had had a meeting with him, and I had been particularly fragile, given how poorly I had been treated on the phone by the 9th Circle of Hell. He insulted me – just the normal amount he always did (and always does) – but on that day I couldn’t quite take it. And, I committed one of the cardinal sins of workplace unprofessionalism in his eyes. I cried. And, when he pointed out that I was committing that egregious sin, I only managed to stammer out that my sibling had nearly been lost from abuse by people licensed to take care of him, the 9th Circle of Hell didn’t care, and I had no clue how to find safety when the very people who were supposed to oversee this stuff were turning a blind eye. Instead of having the grace to stiffen up and grovel for my initial offense, I said more about myself, and admitting such additional “inappropriate” personal details required, apparently, that four-hour spontaneous meeting wherein I was further dehumanized and demoralized as he pretended that I was some sort of imbecile who had barely functioned at my job for the years I’d been there. 

Perhaps if I hadn’t already dealt (unsuccessfully, at that point) with the demons of the 9th Circle of Hell that day, I might have gathered my wits enough to challenge how – if I were truly so egregious an employee – I’d been marked highly by him at each of my past evaluations and had always received merit-based raises to boot. Perhaps if I’d not been treated so egregiously by the 9th Circle of Hell that day, I might also have had the foresight to record his own tirade such that – by the time I went on not-FMLA at the end of the month – I might have had that recording of his own meltdown as leverage to ensure he took me back. (Given he fired the rest of my office while I was on leave and his last words to me before I left were to “fix it in the next few weeks or you are no longer any use to the company,” that leverage probably would have been very reassuring, even though, as my regular readers know, I ultimately survived both Hell and my boss and was rated high-performing again at my last review of 2018.) Perhaps any one of those things might have gained me a bit of a handhold as my entire life crumbled around me last year and prevented this time of the year from now also becoming a traumaversary. But, I did none of those things last year.

I simply dissociated.  After I checked out of my own mind, my body was apparently able to parrot the right amount of kowtowing to appease my bully-of-a-boss and shut him up. I did enough not-imbecilic work in the next few weeks that when I finally asked for not-FMLA, he remembered why he’d hired me and offered it to me (albeit with those delightful parting words to terrify me on the way out…) I pretended I was fine, and – thanks to the miracle of dissociation – I absolutely believed this week wasn’t the one year anniversary of anything terrible until my own imbecilic mind betrayed me and I went hunting for why I have been feeling so re-traumatized lately. 

Dissociation was probably the only way out of that mid-June day that I didn’t-want-to-remember-that-I-remembered from last year. It is also, however, just as weird as any traumaversary. I said and did the right things to somehow set myself up as an employee worth granting not-FMLA to a few weeks later. I looked and behaved like a human – and a competent one at that. I just don’t happen to remember any of it. Thus, the weirdest thing I have now learned about trauma and dissociation in 2019 is that even I didn’t quite realize just how well I pretended to be human while taking leave of my brain temporarily in 2018.

In the process of attempting to work out why I have been so triggered this week, I discovered that – sometime during either the dehumanizing and the demoralizing that was that call with the 9th Circle of Hell and/or the dehumanizing and demoralizing that was my boss discovering I was upset by that phone call – I wrote a poem.

I. Wrote. A. Poem.

That is very weird. I clearly had to have written it in a very dissociated state, because – while I was lucid enough to record in my reality journal that I had been severely dissociated enough to have lost cohesive memory of portions of two events that day – I was not lucid enough to record anything in my reality journal about having written a poem. It’s definitely my poem in my handwriting in my locked leather journal that only I know the passcode. Yet, I’m the kind of person that is terrified to write poetry even in my locked journal because my own-bully-in-my-brain would still be able to find it. I must have seriously needed to distract myself with something else equally scary to have resorted to poetry to hold on to my pretended connection with humanity on that particular day in June 2018. I’m half terrified of just how much I clearly did to maintain my human mask while dissociated and half proud of just what all I accomplished even if I don’t remember it.

I would ordinarily be too terrified to ever share a poem I’d written – especially one that I clearly didn’t proofread as I didn’t remember it existed! – and I wouldn’t post Messages in a Bottle two weeks in a row. But, whether I like it or not these next few weeks all have the potential to be “surprise” traumaversaries for me, this year at least. I’d like them not to be traumaversaries forever. My fear of the internet’s response to some potentially bad poetry this week in 2019 is nothing compared to what I was dealing with this same week in 2018. I should celebrate that with a bit of fearlessness. That means reminding myself that I am safe in the “here” and “now” in 2019, and also that – even when I was trapped in Hell in 2018 – I was still resourceful enough to survive it (again.) If writing a poem was part of that survival, I probably should at least post that poem in commemoration.

A fair warning, though, that poetry written in a dissociative despondent state is not going to be full of rainbows and butterflies. Any readers who are sensitive to descriptions of feelings of hopelessness and depression might want to stop now while they are still just reading about reading a poem written in a dissociated state, instead of reading it!

For everyone else, enjoy my (untitled, because I was apparently not quite that thorough in my trance state) poem from 6/14/2018 below. I did cheat a little bit. I added the punctuation in post hoc because my original handwritten version had none.

Continue reading “Messages in a Bottle #14: If You’re a Poet and You Don’t Know It…”

Subway Sociology #7: Weed Out the Weak

I have spent many years traveling on a graduate student’s budget. Travel was – and is – my preferred way of handling the Christmas holidays, which would rank second after the week-that-shall-not-be-named (aka this one) on my list of least favorite times of the year, except for the fact that my travel tradition actually makes it one of my favorites. (At least, in those years when I can afford to travel.)

Traveling for mental health is my way of flipping the script on what would otherwise be a traumatic time of year, but given that I spent years making an income as a graduate student that didn’t quite leave me destitute – but also didn’t qualify as “comfortable” either – I never got used to the luxury of rental cars. I have never rented a car in any city that had viable public transit. I’ve had my fair share of ridiculous moments trying to navigate unfamiliar transit as a result, but I can’t at this point imagine ever renting a car in a transit city after so long getting by without one. Why pay eighty bucks for parking when I can pay ten dollars for a day transit pass?

I certainly can’t imagine renting one in my own city. I never learned to drive here. We had a car when we first moved, but the lack of street parking, the prospect of “parallel parking” if we ever did find parking, the feet of snow dumped on cars in the winter, and the extortionary private garage parking fees required to avoid dealing with any of the former quickly led to us giving it up. Even for the brief period that had a vehicle, we never drove to any popular tourist locations.

My Partner’s grandparents were traveling with childhood friends who had moved to another Southern state as part of an annual get-together tradition, and their stop in our city was one among several on the East Coast. (I continue to be amazed that there are people in this world who have maintained friendships for more decades than I have been alive, but this, like young marriage, seems to be the norm in the South.) Their hotel was outside the city because hotel costs are possibly the only thing more disproportionate than parking (or rent) in our city. They asked us to show them around, and we (naively) assumed they meant by subway. However, they were not comfortable using public transit, even with locals to personally shepherd them from Point A to Point B. They seemed convinced that the subway would be unsafe, dirty, and unreliable.

Continue reading “Subway Sociology #7: Weed Out the Weak”

Blog Awards Series #6/Improv #17: They Say It’s Your Blog Award

ADHD Storytelling
<Image Text>: Non-ADHD Storytelling = start-of-story to end-of-story. ADHD storytelling= takes every detour and side tangent possible!

ADHD is known for “all or none” thinking, which also translates to “out of sight/out of mind.” It’s basically the reason our infamous desk piles are productive for us. If we put something away in a “safe spot,” we’re guaranteed never to look at it again!

The right amount of color in an organization scheme is similarly distinctive, but, if I color coded everything in my Passion Planner by its due date, as the true bullet journal fanatics will, then nothing would ever be urgent because everything was. In the end, I have two highlight colors only: blue for “due by end of the week,” yellow for “due by the first couple of days of the new week.”

Thanks to histrionicbutterfly of Life As Me, I was reminded of an obvious fact I had still managed to completely overlook: this kind of out-of-sight/out-of-mind” and “all-or-none” thinking can occasionally be neuroprotective. The easiest way to avoid difficulties from two masks falling off when trying to wear them simultaneously is to only ever wear one at a time in the first place! I sent my Partner off to entertain the grandparents-in-law and “revised” my call time extra early. Between not having to put on my “dealing with family is still scary” mask at all and the fact I am still photosensitive and can’t actually make out the audience behind the stage lights even when I want to, it felt like performing normally. I was happy with how the show turned out.

The only thing I was disappointed by in the show was that we didn’t get to play a game called Lyrics Only, which is exactly what it sounds like. Performers must run an entire scene speaking only in lyrics from songs as their answers. I love word games in Improv generally, but I am usually less fond of that one – not because I’m terrible at it in absolute terms, but because I’m terrible at it in relative terms.  The audience connects best with lyrics from popular songs, and my musical tastes run a few generations too old for my audience (and me, by my age alone.) The audience usually can tell they are lyrics but don’t quite know the songs to truly appreciate them because they can’t mentally sing along. However, since I usually have the lyrical stylings of someone’s grandmother, I was hoping that I’d get to trot out this “relative” strength the one time I had honest-to-goodness relatives of appropriate age to appreciate in the audience. Alas, it was not to be.

But, overall, things went well. However, “going well” still meant far more “peopling” than I am used to. I’ll write more next week, but for this week I claim the “peopled out” privilege. I also haven’t forgotten that this week remains the week of the b-word that shall not be named and also the one-year anniversary of the most recent reason why that date continues to live in infamy. I did seriously look into taking the advice of another blogger, Vixxy Rose of Crazy Little Things and renting a rage room to “celebrate” that fact, but it seems that the idea is too popular for its own good. The one that would be nearest to me is closed for the next few months while it remodels to accommodate the “unexpectedly high demand!” (Though, when it reopens, it will, I note, let me pay extra to smash some unwanted mementos of my own to my own custom playlist for a little extra. I briefly wondered what soundtrack could ever accompany the 9th Circle of Hell, then realized I had already unintentionally created one in the form of my Zombie Apocalypse playlist from last year.)

Since I can’t go apocalyptic on any remaining evidence of the last year, I guess I’ll fall back on another old standby for this week for when I want to be an introvert for a week but still post something  remain balanced during a frustrating anniversary. I’ll respond to a blog award! This week’s episode is graciously provided by justsaltwriter

Because I’ve got lyrics (or rather, the lack of the chance to enjoy them on either stage or smash) on the brain and also because the ADHD brain – in addition to being all-or-none – has a tendency to take a very generous interpretation of what qualifies as necessary and sufficient for appropriate storytelling, I’m going to answer all of the questions in the form of Lyrics Only. Why? Because a ) it’s my birthday blog award and b) I have expended more spoons than recently than usual trying to rein in my tangential ADHD storytelling tendencies to play tour guide in a way that doesn’t literally bounce between three centuries of colonial American history within five minutes – with a dash of subway sociology thrown in for good measure. I’m letting my tangential flag fly here in recompense.

Continue reading “Blog Awards Series #6/Improv #17: They Say It’s Your Blog Award”

Improv #16: Demotivation-in-laws

*Knock knock*

“Who’s there?”

“Demotivation-in-laws”

“Demotivational who?”

*Slowly* “No, Demotivation-in-laws”

“Oh, Then, I guess I heard you correctly the first time. I was just kind of hoping I was wrong…”

“Surprise! We are here to support you!”

*Slams door in faces*

Things to know about rejection sensitivity in ADHD: 1) We’re sensitive to both real and perceived rejection. For instance, we’re sensitive to rejection even if it’s explicitly been established that the insults are a part of a comedy bit. 2) We’re also entirely capable – and probably most adept out of anyone – of triggering our own RSD spirals. Since I also have Ehlers-Danlos Syndrome, I’m pretty sure I can claim I am adept enough at self-sabotage I could literally shoot myself in the foot with both arms tied behind my back (and maybe both feet, too, while we’re at it!)

Don’t believe me? I was once in a scene wherein the first actor entered the scene with arms outstretched to indicate he was a wall poster in an office building. Since effective scene painting is all about symmetry, I then had to keep my arms stretched out at my side when I also came out to play a poster. We were “demotivational posters,” so while other players acting as office workers read sweet affirmations about kittens hanging in there on our imaginary pages, we were secretly mocking them and sharing their darkest secrets. We’d whisper in their ears and make them think that their officemates were the ones insulting them. Finally, the humans in the scene got wise to us and started whispering insults back at us, making us turn against each other in our poster posse.  One of the insults whispered at my poster was that it smelled stale.

This was directed at the poster itself, but I was at that moment standing there with both my arms out at my side while in real life someone was technically sniffing me. On the one hand, individual improv scenes only last around 1-2 minutes per scene on average, so even though I wasn’t in the most comfortable position for a spoonie, I hadn’t really been hanging out there long enough to be sweating in a gross way yet. Or, you know, so I told myself. On the other hand, we were about halfway through the set. Rejection Sensitivity meant I still felt anxious for the rest of the set until I could dash off to a bathroom and sniff under my armpits. Just in case the last insult had been directed at me, not the poster I was portraying.

Things to know about my birthday: Nothing at all, preferably. It’s very demotivating all on its own, and I’m quite comfortable pretending it doesn’t exist. Frankly, I’d be ok with excising the entire month of May from the calendar, just to be thorough.

Things to know about my family of origin: They engage in enough real rejection that they make my own attempts at self-sabotage look like amateur hour. I’m not exactly grateful for my family’s utter indifference. I’m human and I sometimes wish that I had the kind of relationship with my remaining blood relatives wherein I’d be embarrassed to be receiving flowers after a performance and/or wonder if they were just telling me I did a good job because that’s what families are supposed to do, even though I actually sucked. I also occasionally wish I’d had the kind of family that had taught me certain social scripts like that I should remember when Mother’s Day is (today, for anyone who has parents – or in-laws – that they care to call before the day is up!) or that I should let someone else know if and when I get into a car accident in a foreign country.

But, that’s not the family I had, and, well, that’s a relief sometimes, like when I do want to perform in public. One of the few upsides to a family that doesn’t care that is that I have never had to worry about my RSD tendency to panic spiral whenever people I know are watching me at improv. My Partner doesn’t trigger that kind of spiral (*cough cough* anymore, at least most of the time), and nobody else has ever watched me. I am incredibly socially awkward around small groups, feel that way about my own teammates watching me, and can trigger my own RSD spirals about my performance (or just about anything else!) But, I am pretty much okay with big faceless audience masses who don’t know me personally – and never will – watching me. If Lavender sucks on stage but nobody ever actually knew her name, then it isn’t a permanent indication of her worth, or some such. The primary trigger of any of my current performance rejection spirals is thus me. And, I can (with a dash of “clinical strength” deodorant just in case I get sniffed on stage again) mostly manage my own demotivation.

Things to know about my in-laws: 1) They don’t know any of the things above about me.

Continue reading “Improv #16: Demotivation-in-laws”

Messages in a Bottle #12: Six Degrees of Kevin Broken

CW: descriptions of systemic abuse, abuse statistics, speaking out about past abuses

This Message in a Bottle was literally previously a published blog post in March. But, the original version of the post was first password-protected, because, at the time, I worried that putting it out there simultaneously would somehow undermine the credibility of what I was attempting to accomplish in the non-blog world.

Now, a couple of months have gone by. We’ve received our reply, and our story, for whatever it is worth, is in the hands of one of those task forces charged with “getting to the bottom of things” in hopes that the failures of the 9th Circle of Hell will at least teach the East Coast how to clean up their own act for vulnerable populations. Will it accomplish anything? I don’t know. I’m justifiably jaded, and I know that systemic abuse within and by state-funded agencies across the nation has no easy solution. But, injustice anywhere is injustice everywhere. So, in theory, taking action anywhere is metaphorically striking a blow against the 9th Circle of Hell, as well? Or something like that? I don’t know. But, my Partner and I tried offering our experiences as an example of what never, ever should happen to those in care facilities in any state anywhere in the U.S. – or across the globe. 

May is Mental Health Awareness Month. Individuals with disabilities experience sexual assault and other abuse at rates at least seven times higher than the general population – making them the most at-risk population – even before rates of assault in institutions and other state-funded agencies are factored in. As this NPR article states, accurate statistics can’t even begin to be reported for such places. I know this first hand – because I’ve tried to get them – so I concur that the true rate of abuse and neglect are, in reality, almost certainly even higher than what is reported.

I also know that PTSD is an incredibly common response to traumatic experiences such as abuse and neglect. PTSD is a common mental health challenge across demographics, and individuals with disabilities aren’t somehow immune to it as they experience these unconscionably high rates of abuse and neglect. PTSD is a response to trauma, and individuals with disabilities experience a disproportionate amount of trauma. It is no surprise that many disabled individuals develop trauma triggers and PTSD as a result.

It is unconscionable that there isn’t more awareness that a more frequently traumatized population will also be more likely to require sensitive, trauma-informed mental health care from caregivers and agencies. It is even more unconscionable that – rather than getting such care – that those same trauma responses that Mental Health and Trauma Awareness campaigns try to normalize within the wider population are still dismissed in individuals with disabilities as unexplainable, meaningless “bad behaviors.” Then, these “bad behaviors” are not only misattributed but are commonly used by agencies as an excuse to evict clients who have already been through plenty (quite possibly at the hands of the agency trying to use their trauma responses to evict them in the first place!) 

For Mental Health Awareness Month this year, I want to remind people that the toll taken on my own and my Partner’s mental health by the evil actions of the 9th Circle of Hell in 2018 were also extracted on my sibling. I may have to be the one to tell the story because the system isn’t really set up to give my sibling a voice, but I want to be clear to people that just because I am the one writing the story, that does not imply that I was the only one scarred by the events of 2018. I’m just the one with the most current capacity to shove it in the system’s face in an attempt to create change.

The post below was written as I worked through my own trauma responses in an attempt to use our experiences in 2018 to shove such awareness into the faces of some of the members of the “system” on the East Coast. I write most frequently about Hell itself, but I am well aware of the East Coast’s failings in the same areas that have recently come to light in a 2019 report on my current state’s “behavioral health” system. I don’t know if my story of being spurned by the East Coast while desperately seeking a way out of the 9th Circle of Hell in 2018 will ever help reform either state’s system, but, well, I keep banging my head against the wall.  The East Coast asked for personal narratives of systemic failures.  I’m perfectly fine with both relaying the literal Hell we went through last year and how if any of their state services – which I guess were busy continuing to fail in the ways outlined in that recent unpleasant report of their own – had gotten off their behinds when I requested emergency placement, we might have been spared several iterations of last year’s Crisis. I also blame the East Coast for failing to be the resolution to the Crisis the 9th Circle of Hell created.

Shockingly, the One-Horse Townhouse remains a genuinely decent-seeming place. I’m as jaded as they come, and I am forever waiting for the other shoe to drop. But, at the moment, they seem like a rare exception to the literal nation-wide travesty of care. I won’t claim anything other than blind luck led us to them. I mean, in the 9th Circle of Hell (as in too many other states) there is no way to look up whether and how many prior abuse cases a provider has had. So, clients literally have nothing but blind luck to go on when attempting to keep themselves or their family members safe from those sky-high abuse rates I described above.

Maybe sharing the trauma echoes I had to work through in March in an attempt to create broader awareness of the trauma and mental health needs of disabled individuals across state systems will somehow up these odds for families. Or, at the very least, maybe it will at least raise “awareness” during Mental Health Month of the need for trauma-informed mental health care for one of the most marginalized demographics this May as long as high abuse rates remain their norm. 

Continue reading “Messages in a Bottle #12: Six Degrees of Kevin Broken”

Coat in the Act

funny-Ironman-Tony-Stark-heart
<Image>: Captain America says to Ironman “Big man in a suit of armor…You take that away and what are you?” Tony Stark replies “Stark naked!” I have not seen Endgame yet, so this meme is not permission to spoil it!

Some people are aware of everything, including their clothes, to the point that they can instantly pick out their generic solid-colored raincoat from among all others. There may be many like it, but that one is theirs.

My Partner is one of these people. He’s acutely aware of color shades and such minute (to me) details, even as he simultaneously sports a minimalist wardrobe of 5-7 pairs of solid-colored slacks and shirts that fit him comfortably that he buys in coordinating shades and wears repeatedly. He always recommends I go similarly minimalist, but I still fear the ever-present career double standard for women. Drawing overt attention by dressing outside the feminine norm feels too exposed and risky. It’s not as under the radar, unfortunately, for neurodiverse women to fully embrace comfort and simplicity over fashion, even if my diminishing numbers of spoons from various diagnoses have gradually pushed me in that direction out of necessity. Guides to minimalist female wardrobes still talk about wearing a small number of items in so many ways that it looks like a month’s worth of unique outfits. This implies that having a month’s worth of unique outfits is the norm. At that point, it seems easier to just own a full month’s worth than to add daily mental gymnastics to combine a much smaller number of pieces to look like more into my morning routine. Committing to the laundry to stretch fifteen items of clothing or some such into a month’s worth is also pretty daunting in and of itself.

I wish that I could buy a small set of slacks and shirts and just wear them repeatedly instead of having to Rube Goldberg them. The idea of a uniform as my “personal brand” is incredibly appealing. But – though I haven’t fully embraced the uniform idea – I have a few all-or-none clothing awareness items that matter to me. I am clueless about fashion, but I have meaningful criteria that help tamp down that panicky, overwhelmed ADHD choice paralysis whenever I have to go shopping. For instance, I picked out a new spring raincoat coat recently. The inner lining had to not feel “sticky” when the plastic touched my skin. I hate the sensation of sticky above all other sensations. It had to have pockets – which too many women’s clothing items don’t – and those pockets had to zip closed or anything I put in them would inevitably fall out and be forgotten. It had to be sufficiently waterproof that – if and when I inevitably left my umbrella somewhere – it could do a decent job without any umbrella adjunct, yet it also had to be lightweight enough to fold up and live permanently in my bag without hurting my EDS joints until needed. It also had to be a simple, solid color, because anything brash and “stylish” can’t be worn until it wears out without drawing attention. I’ve had these criteria for coats for years, so, by this point, I have learned to look first at North Face and Columbia Sportswear and only seek further if they don’t have anything suitable. The winter coat that I have had for almost a decade and probably could pick out from a lineup is by one of them. (I’d have to go look in my closet to remember which, though, so maybe that still says something!)*

I went to a conference last week that was close enough to commute by train and return after one overnight. The northeast has been receiving a lot of rain lately – enough that I remembered and needed both the raincoat stuffed in my bag and an umbrella just to be safe – and conference goers were universally soaked by the time they checked in at the front door. The conference did not, however, have a formal coat check. It only had a self-check rack with a sign stating not to leave anything valuable since it wasn’t manned.

I normally keep my coat and other items with me in such instances. If I see a line for a coat check at the end of the day, it will remind me of the little slip in my pocket and the fact that my coat is at the check as well. I won’t notice a self-check that people walk up to in ones and twos. Without even a coat-check sticker prominently stuck to – or used as a bookmark – on my conference program to remind me, there’s too much of a chance I’ll leave without my gear if the weather changes while I’m inside. (I’ve also lost enough conference programs during the program itself, because I have a gift, that the end-of-day line for a manned check is still a necessary backup reminder.) But, there was little I could do this time. I was soaked like the others, and I assume they’d have found it rude if I dripped on my neighbors in the cramped auditorium seating.

I thought I was incredibly proactive in handling my conundrum. My umbrella was a generic shade of dark navy, and my coat was too new to be confident I’d recognize it. So, I made sure to discretely snap a picture of the rack orientation of my coat and to loop my umbrella over the same hangar. Nobody else seemed to be doing this, presumably because this would allow their umbrella to drip onto the inside of their raincoat. They used the available shelf to stow their umbrellas. I thus figured I had plenty of memory aids to identify that coat I could remember so many specific minor details about but that I still wasn’t confident I could pick out of a lineup.

It probably would have worked, too. I waited long enough for the coats to dry then returned over lunch – before the rush of people at the end of the day – to retrieve my coat and umbrella before I could a) forget about them entirely or b) be thoroughly embarrassed by being caught staring intently at my visual aids to locate my stuff.

The coat rack looked nothing like it had in the morning. Some “helpful” person had straightened it up in the meantime. Every. Single. Umbrella – including mine by default – was neatly stacked onto the rack. Every umbrella looked exactly the same. There was no grey raincoat at the end I’d originally hung it. There were, however, four total grey raincoats in my size from North Face that had their trademark dry weave lining, zippered pockets, etc. I first discreetly rifled the pockets of all of them in case business cards, chapsticks, maxi pads or any others of the dribs and drabs that tend to accumulate in the pockets of women with ADHD could act as tell-tale markers. The pockets were all empty. My own coat was still too new for me to have had time to mindlessly collect.

The coats differed in their shade of grey, however, when I looked at them in the light. Thank goodness. The umbrella was much harder to identify until I finally remembered my current one had a push-button mechanism to launch it. Only one of the many identical-to-my-eyes dark navy specimens had an automatic feature. I found my stuff without being caught looking as lost as I felt, folded my coat up and stowed my items in my bag. At the end of the day, I put them on and got a lift to the station.

My Partner looked me over when I got home and said he liked my “replacement coat” for the one I’d lost on my trip better than my original. The “lighter shade of grey looked good with my hair.” FML. If my Partner could instantly tell it was a different coat, I guess I’m not as perceptive as even I thought I was. I trust his attention to detail. If he says it’s a different coat, it is a different coat…

How in the world do I attempt to call the organizers of a past conference and explain that I walked off with a similar – but apparently not nearly as similar as I thought – coat and didn’t realize it until someone else noticed? Is there even a mechanism to report lost and found, or was their blanket warning not to leave any items we couldn’t afford to lose on the coat rack tacit admission that my “borrowed” coat will remain my coat from now on? Is there any hope that the owner of that coat also can’t tell the difference and is even right now blissfully wearing mine, equivalently unaware of our switch?

I guess it’s time to start writing my name in my outerwear and assuming anyone examining my coats closely enough to see it would, like me, be grateful in the moment for any clear visual signal that the coat they are examining is not theirs.

For whatever it’s worth, though, my Partner-who-notices-everything did confirm that I successfully returned the same umbrella that I left with. I may be an unintentional coat thief, but I’m not an umbrella thief as well. That may be the fashion equivalent of shooting the sheriff, but not shooting the deputy, but I’ll take what I can get…

*P.S. – my winter coat is actually by Merrell. My Partner has one from Columbia. But, after asking him, my Partner at least confirmed my previous rain jacket was by Columbia and I was correct in my memory that the jacket that I unintentionally swapped really was by North Face. I had the brand of the real coat right, if not the color. And yes, for anyone wondering, I do force my Partner to come shopping with me. He’s much better at this than I am, even though he himself only ever wears slacks and shirts.

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

Work/Life Int-egg-ration

I used to think my boss’s term for work-life imbalance was something he made up. I don’t know why I thought this, other than that he always said it so confidently and without attribution. I’d never have had the confidence to pass off a saying that often without crediting the original source, so I just assumed. Thus, I figured I could never share it on my blog because it would be too personally identifying. I don’t know why I never just googled it. If I had, I’d have established long ago that the term isn’t something he came up with. He cribbed it from a Forbes article – or possibly Berkeley’s MBA program – and just takes it to illogical extremes.

Why should I have assumed, given that he liberally borrows his own employee’s work at conferences without remorse, that he’d somehow do otherwise with awful aphorisms? (Of course, the way he adds on that we should all be so grateful for our “fulfilling” job that we are willing to work many nights and weekends to hit our growth goals even as he screams at us might be considered ‘original!’)

There are two kinds of people who live permanently only in the “now” or the “not now.” Time blind ADHDers – and bully bosses. How does one tell the two apart? Well, in my experience, folks with ADHD will inevitably blame themselves for any missed deadlines or forgotten important project components – usually to the rejective sensitive extreme – while self-absorbed bosses will simply assign major deliverables with less than twenty-four hour notice to employees whenever they suddenly realize that they actually need something for a conference that they could have requested weeks ago if they cared at all about the “life” part of “work-life integration.”

Continue reading “Work/Life Int-egg-ration”

Read Bad Books

Why do Targaryens make terrible stockbrokers?

Their assets always end up in a fire sale!

I am no longer sure I’d call anything George R.R. Martin writes “good.” He burned some bridges with this leal reader with Winds of Winter. I finished a real-life Ph.D. with ADHD in less time than it has taken GRRM to write one book. I’m more than fine with HBO scripting the only conclusion to a Song of Ice and Fire to ever see the light of day. At least it means that there will be a conclusion. There is, however, still something disheartening about getting most of the way through the book GRRM wrote instead and realizing he only covered the first half of 300 years of Targaryen history. Fire and Blood: 300 Years Before Game of Thrones (a Targaryen History) is an epic monument to paid procrastination and GRMM still couldn’t even finish it? Really?

That is…disappointing. Especially given the fact I am listening to the prequel on audiobook, and it is 26 hours long! I’ve been encouraged by my neuro-ophthalmologist to rest my eyes when I don’t need them for work because their ability to focus together continues to decline. Thanks, Ehlers-Danlos Syndrome. Listening to GRRM’s words instead of reading them makes certain quirks of his writing almost painfully apparent. (I wonder if his editors were equally burned by this point and so desperate to ship anything new of his that they only gave Fire and Blood a minimal once-over?)

Three-quarters in, I’m not sure from a literary standpoint whether Fire and Blood is actually well-written.  It overuses words. Like, seriously overuses them. Like “overuses them so much that it has become a game for my Partner and me to take a non-alcoholic drink every time he uses the word ‘leal.'” (GRMM is obsessed with loyalty, but our ‘drinking’ game has to be non-alcoholic because I’m pretty sure we’d both die if we tried to use alcohol during the playing of The Leal Deal. GRRM has singlehandedly ensured that even this girl who is dysautonomic has consumed many more than her recommended liters of water daily this week.) It also has an annoying habit of setting up mysteries that are never resolved. “What was in that letter” will never be known to readers. I’m fairly sure GRRM knew what was in the letter – it’s his imagination after all – so would it have killed him to tell us? What does playing coy accomplish in a one-off?

I am not sure, for these reasons, whether what I’m currently reading is actually good. I am sure, however, that admitting I’m reading it is, at least, not embarrassing. That is not true of many of the other books I have read over the years.

Continue reading “Read Bad Books”

Where’s Whoopsie #20: Snow Wrist

Career lessons for the chronically ill:

  1. Write out your routine in your planner, including basic self-care essentials like physical therapy and tracking water intake and medications, alongside your work deadlines. It’s a nice little shot of dopamine to cross off basic self-care tasks in your planner, and it helps with managing energy levels at work.
  2. But, write all appointments in pencil because life is unpredictable. Sometimes you will, for instance, have to reshuffle an entire week’s predictable routine of physical therapy, actual therapy, meals and the like to attend a beneficial career training. It helps if you can erase to adapt.
  3. If and when you willingly disrupt your usual daily work routine to attend an onsite continuing education training that will likely make you more desirable to positive unpredictabilities such as career advancement in the future, suck it up and ask to take notes on a laptop. Planners can be written out by hand. Course notes cannot. DO NOT try to take notes by hand with a pen for two hours. It can – and will – destroy your wrists.
  4. If you ignore the advice in #3 above, at least do not further compound the problem by then attempting to write a full blog post within 48 hours of failing at the above.

I am guilty of #3 this week, and my wrists and hands are screaming at me for it. I will attempt to take my own advice and not also be guilty of #4. Full blog posts will resume as soon as my joints have forgiven me for thinking I could still take hand-written notes this far along in a progressive diagnosis. I couldn’t take notes by hand even back when I was still in undergrad. I don’t know why I forgot that fact during professional training this week?

In the meantime, have a picture of Ehlers-Danlos Syndrome. It is, after all, the reason (alongside Rejection Sensitive Dysphoria and a bully-in-my-brain that still feels toxic shame over asking for accommodations like using a computer instead of just taking hand-written notes like everyone else. The Evil Queen has nothing on the bully in my own brain.) I should have just said I can’t handle hand-written note taking, even if the training did take place over a “working lunch” and most people were capable of balancing food in one hand and a notebook and pen in the other. I didn’t. Because toxic shame sucks…

See you all when I’m finished paying for that lack of self-advocacy. (The artwork, for anyone wondering, was created before the aforementioned overdoing it.)

EDS_WheresWhoopsie - Copy
<Image> The Evil Queen staring into her magic mirror. Magic mirror asks her whether she means the age a body looks or the age a body feels when she says “fairest,” as that distinction will affect its answer. In the second panel, a zebra’s ears are burning. The zebra wonders if it means someone is thinking about them or if it’s just a new symptom. <Image Text>: Ehlers-Danlos Syndrome: when your skin is as fair as Snow White, but the pain turns you into Grumpy Dwarf!

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