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”

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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”

End-User Experience

SelfCareRevelation
<Image Text>: “Most People have ‘Ah ha’ moments. I have “Oh for fuck’s sake, fuck this shit” moments.” Note: this is a pretty apt description of the process of me finally accepting that I’m better off actually taking care of myself rather than letting the opinions of others prevent me from benefitting from readily available accessibility aids that would save me critical spoons.

Movie theaters have become events in and of themselves. One that opened near us recently has a full restaurant inside of it where patrons can eat at traditional tables before the movie – or order their carnitas nachos to be served at tables inside the theater while they recline in their heated leather seats. The theater also boasts gourmet versions of standard guilty pleasure treats made with all natural, non-high-fructose-corn-syrup ingredients like white raspberry slushies and cheddar and caramel popcorn.

And – although they offer treats with more FODMAP-friendly ingredients that make me less likely to need them in a hurry (if you know what I mean) – they additionally offer bathrooms with marble stylings and individual sinks each equipped with their own personal accoutrements and air dryers so I’m not missing even more of the movie than necessary getting stuck waiting in a line when I’m hoping to rush back to my seat after an inevitable potty break during the three-hour-long Avengers: Endgame.

All of this luxury comes with a price tag roughly 20% higher than a standard 3D theater without these little extras. My Partner and I only see a handful of movies in a theater each year. We figure for those movies we judge worthy of a night out, we might as well make it a true experience. (Also, those bathrooms. Seriously. That alone is worth 20% more to any spoonie with GI issues as part and parcel of their diagnosis…)

Unfortunately, the first time we saw a movie in our new elaborate dine-in theater, the experience was missing one detail that further explains why, in the end, it hasn’t only been the price tag that has limited the number of films we’ve seen in a theater each year. Closed Captioning.

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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”

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.

Subway Sociology #6: I Seat Drunk People

Did I ever mention that I am an irony magnet?

This is an important baseline state of reality to establish for new readers who might otherwise question how my Partner and I, specifically, ended up being the second and third of (hopefully only) three residents of a large urban city stuck explaining the intricacies of Pokemon Go to a drunk “friend” supposedly hiding from his “ex-girlfriend” at our table at Shake Shack while thousands of gaming confederates across the country caught their Bagon unaccosted during Community Day.

Since that drunk “friend” specifically requested “cover” while he snuck away to the nearest subway entrance, our experience thus represents the sixth valid trial of my subway sociology experiment. My original hypothesis was that the line I take to improv is statistically “weirder” than nearby lines. My current tally of blog-worthy baffles runs 4:2 in favor of the line in question. Suggestive, but not at all statistically significant, especially when properly controlling for my own frequency of line ridership.

My Partner, however, wishes for me to note that I have potentially overlooked two additional hypotheses worthy of testing: a) my irony magnet superpowers extend to subways and b) there are statistically higher rates of oddball experiences on all subway lines (as well as in general) whenever I am nearby. He pointed out that my having previously mentioned hydration drinks being advertised on public transit as hangover remedies without actually describing any real-life interactions with their target audience could be construed as daring the universe to offer me up a live specimen. Irony. Magnet. (He also suggested, after he had finally forced our “friend” out into the wilds again, that I should refrain in the future from being the one to nab seats for the two of us even in a crowded fast food joint well over its listed capacity of 131 people. The risk of my irony powers kicking in is just too high whenever I’m talking to strangers for even a minute…)

Continue reading “Subway Sociology #6: I Seat Drunk People”

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.

Shooting for the Spoons

A lot of popular wisdom is rather dubious when actually examined. For instance, the common career advice to, “Shoot for the moon. If you miss, you will still land among the stars.” Unless the flat-Earthers know something I really don’t, even good old Sol is much further away from us than the moon…

Another bit of dubious popular wisdom I hear regularly from would-be experts (who have usually never heard of most of my diagnoses before) is, “An apple a day keeps the doctor away.” I certainly am careful with my diet, but an apple a day does not keep the doctor away for me. In fact, following the common wisdom for most of my working life to eat as naturally as possible on business trips to minimize GI symptoms has been about the worst possible choice for me. On travel per diem – and thus not responsible for remembering expiration dates for the fresh veggies and fruit that I so often forget in my fridge for weeks until they spoil – I would load up on all of the fresh fruit in an attempt to keep the gastroenterologist away. And, yet, I always felt like my IBS symptoms were worse on business trips anyway. The inevitable refrain from the “apple a day folks” – and many of the doctors that were supposedly being kept away – was that it was just “my anxiety” exacerbating my symptoms. So, I both had to plan for disaster each time and for the bully-in-my-brain to refrain how it was my fault since I couldn’t just “relax.”

Continue reading “Shooting for the Spoons”

Improv #15: Twitterpated

*Knock knock*

“Who’s there”

“Hashtag”

“#who?”

“#whoknewTwitterwasoccassionallyuseful? Not me, at least not until today…”

I do not take the full – or even the half – advantage of social media that a blogger is supposed to, so I can’t actually add my contribution to the #AbledsAreWeird Twitterstorm on Twitter itself. I can say I have been laughing myself silly over that hashtag today. For any spoonie who hasn’t seen it, I highly advise you to check it out when you need a break from the world today.

Since I am not twitterpated by the idea of adding yet another form of social media for my poor ADHD brain to have to manage in general, I’ll add the contribution I would have tweeted if I bothered to maintain a Twitter presence for my blog here instead. (But, though I’m only posting here, seriously go check out the actual hashtag on Twitter too!) I will, though, at least conform to Twitter rules and keep my contribution to 280 characters:

Improv actor share:”Doc 1st thought symptoms were chronic, but thank God my infection was acute. How could I live w/pain forever? Life wouldn’t be worth living!”
Lav(next up w/visible cane):”I guess my share is I’m chronically ill & life is worth living? Kthanxbai”#AbledsAreWeird

Yes, that’s a true story, and from very recently. No, I have no idea what, if anything, I should do about it. The person who made the comment was just a student in a class with me. That class is now over. In principle, I won’t see them again? (I mean, it’s not like I’m going to choose to perform in an indie troupe with someone who’d speak like that when I’d previously shared that I occasionally require accommodations for the physical parts of improv because of my chronic illnesses and they still thought that was an appropriate way to phrase a weekly highlight…)

But, the instructor, who is a regular and very serious theater performer, also did not seem to get that there was anything amiss about that comment. This speaks to the broader complete cluelessness about spoonie sensitivity that the hashtag also makes apparent. There’s clearly a need for more awareness among the theater crowd about a) why a spoonie’s life is worth living, even with their chronic illnesses and b) why if an abled performer doesn’t happen to agree, they should still keep their big fat mouths shut about it since at least 1 in 4 of their audience members will also be living with some form of chronic physical or mental illness.

The theater has been encouraging “tough conversations” around diversity and women’s issues in the theater recently. So, it seems like it might be an appropriate time to point out that many performers – and audience members – are also members part of the largest minority group in America. It is just as critical to have “tough conversations” around how to speak about disability as it is to discuss how to speak about race, class, culture, religion and sexual orientation. I am getting really sick of even so-called Progressives managing to include just about every possible form of inclusiveness except disability in their sensitivity training. I’m also not really high enough up in the theater to know where to start to change the narrative, unfortunately…

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