Striped Girls Can Jump?

Reminds me of a few people I know!!
<Image Text>: “Your flexibility amazes me. How do you get your foot in your mouth and your head up your ass all at the same time?”

People have the strangest reactions to learning about Ehlers-Danlos Syndrome. So, telling them about it when you are already socially awkward quickly becomes a study in ridiculousness. For instance, I got to have that discussion recently with my hair stylist. It ended with me jumping up onto things alongside the majority of the salon staff. I promise there was no alcohol involved. I just would rather do practically anything – including impromptu social experiments – than make “small talk.”

My stylist knows that I have dysautonomia. I hadn’t exactly planned to tell her, as how does one broach that conversation during “small talk” at a salon, but fainting in her doorway last year kind of forced the choice between sharing the diagnosis or paying whatever the deductible would have been for an ambulance ride when the owner was afraid otherwise I’d die on him – or worse sue him. My old office, before my bully-of-a-boss fired everyone in it and made its lone survivor a fully remote worker, used to have a faulty heater. I had to wear a sweater, an undershirt, and a camisole just to keep from turning blue in that office most of the year. In winter, I’d then add a big heavy waterproof coat, scarf, gloves and hat on top of it to walk the about ten minutes from my office to where I get my hair cut. I learned last winter that just because it is 50 degrees inside your office and about 20 degrees outside, some salons will inexplicably choose to keep their facilities at about 80 degrees. If you walk into one of those salons wearing all those layers, you’ll pass out in the doorway from the dramatic temperature change. At that point, the cat’s out of the bag.

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Subway Sociology #3: Of Cigarettes and Criminals Who Are Idiots…

CW: mentions of an attempted robbery on New Year’s Eve that did not result in any injuries or financial loss. Mentions of past acute traumas, including a threatened mass shooting, that I have experienced, fortunately also without injury.

Does acute trauma add to the mental trauma load if you’ve already experienced the 9th Circle of Hell? I know that every experience of abuse – past and present – in the 9th Circle of Hell has been one more piece removed from the fragile Jenga tower of my mental health. I know that 9th Circle of Hell trauma compounds, but should I count non-9th Circle of Hell trauma? Does something that I would definitely call traumatic if it happened to others – but that will never take up residence in my nightmares because the price of that mental real estate was set too high by the 9th Circle of Hell – count as part of my “trauma narrative?”

I read a post recently from a blogger with a severe trauma history who witnessed a guy open-carrying a gun in a coffee shop. She was triggered, but she had her coffee there anyway. She had to ask if she should have left or if she was overreacting. Go through enough childhood trauma and your perspectives can get very skewed on things. I commented that the statistics on mass shootings in the U.S suggest that it is wise to leave such situations as soon as it is safe, and maybe even to hang out down the block to call 911 if shots are heard. I almost added that I am very wary of guns “even though guns aren’t a part of my trauma history.” Then I stopped and realized I might be being an idiot. I do have a prior scary history with guns, though I don’t think it is contributing to my PTSD symptoms. I briefly considered writing a future post about whether it is possible to be “triggered” by something while thinking you were unaffected by an event. Then I promptly forgot about it, because ADHD, until my Partner was on the receiving end of an attempted robbery on New Year’s Eve.

We both recovered from the fear within hours, but I wonder – given that other post – if that’s completely accurate, or if we’re just a bit too numbed from the 9th Circle of Hell to respond normally to things that should shake us up for a few days. The robbery wasn’t successful – or I guess very successful – but threats were involved. My Partner did take them seriously until he was able to get into a place with others around to not take them seriously anymore. It was a scary situation while it was happening, even if it ended ok. What is considered “normal” for recovering from acute scares – as that other blogger similarly asked – if your baseline isn’t Hell?

We were heading home from dinner on the subway. Our subway system isn’t accessible in many places. In some places, it’s only “accessible” if you get off at a stop on a line close by, take an elevator, and walk through an underground ramp at a gentle grade that can handle a wheelchair at least a block to the other station. The alternative to walking a block is to have to climb what I unaffectionately refer to as “Stairs of Death.”

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Improv #12: Funny You Should Mention That…

memorial quotes for son | Share Inspirational Picture Quotes About Life - On Facebook
Image text: “Pretending to be normal, doing your best to act like you’re ok, day after day, week after week, month after month, it’s just so exhausting” over a woman crying.

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

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

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

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Candy Canes

Image result for pokemon go pikachu santa hat
Image: Pikachu in a Santa Hat from Pokemon Go.

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

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

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

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

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Top Ten Things I Hate About Top Ten Posts

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

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

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Where’s Whoopsie #14: Where’s it Hurt?

Traveling and being unwilling to bring anything I have actually invested time and effort in with me to Hell means I haven’t posted a Where’s Whoopsie since July! I suppose I could have posted some of my decidedly not-safe-for-work swear word drawings that I relied upon instead of geometric patterns to express my feelings during my time in the 9th Circle of Hell, but even I don’t care to see them, though swearing out loud feels like a great way of reminding myself I’m not in that place anymore. I’m fairly confident some of those swear words leaked into my blog posts anyway over the past few months.

However, I feel like posting something just because I need to mentally distract myself, and typing hurts physically even if it might help mentally. Thus, I’m using the fall back of pretty pictures to make up for a decidedly lackluster pain-fogged blog post. Something appears to be going “around,” and proximity to sick people has resulted in the inevitable acute illness coupled with massive amounts of all-over pain. I would dearly love to understand how bacteria and/or viruses exacerbate joint problems caused by defects in collagen, but they certainly seem to. Acute illness seems to have triggered a truly agonizing all-over EDS joint-pain flare. I’m exhausted but on my second night of painsomnia. The next time someone compares their cold to my chronic illness, I’m going to remind them that we get all the same bugs, then have to deal with another week of our normal symptoms being on overdrive to top it off.

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Blog Awards Series #5: B is for Blog Awards

I am not saying “B is for Bedbugs,” because supposedly things are “happening” with that. The home is hiring a new exterminator to come tomorrow and – again supposedly – is going to deal with the code violations that resulted in the scary green notice. I’m not sure how much faith I have in either of these things, but there’s not much I can actively do until I’ve given them a chance to fail all on their own.

Having learned entirely too much about what to do to keep bedbugs out even before an exterminator comes by when a complex I lived in during graduate school got them – and finding the agency rather lackadaisical about learning from my lived experience – I’ll share it with you all. Food-grade diatomaceous earth lining the walls and furniture is a great way to stop bed bugs and other nasties from getting in if the neighbors have an infestation. It’s also a cheap and surprisingly effective after-care product once the exterminator does treat. I did my research as soon as I discovered my neighbors had them, bought that, and was the only person in a ten-unit apartment that didn’t get bedbugs back in the day.  I don’t think it was strictly allowed by my lease to do my own treatments, but at the time management didn’t care since it worked.

There’s no point in putting it down in my sibling’s room until the infestation is handled with entomological nukes first, but I keep hoping the agency will at least allow me to do the same after-care measures for my sibling’s room later. I’m not quite daring enough to just do them anyway as I did in grad school, because I’ve seen agencies use any technicality to boot someone, they barely wanted someone with a trauma history to begin with, and there aren’t really any other openings.

So instead B is for Blog Awards like C is for Cookie. If I have an enforced sit-on-my-hands week, I probably should get back to that “mental health sabbatical” portion of my not-FMLA. I’m hoping to do some baking. Baking too often seems incredibly overwhelming and not worth the spoons when the world is falling apart. But, I’ve always deeply enjoyed it when I can manage it. My original “balanced scorecard” included playing with inventing recipes as a thing that made me feel more like me.

Today’s other balanced scorecard questions are courtesy of Fibronacci:

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Déjà Voodoo

Update: I also posted this in the comments, but then I remembered that smarter folks than I often skip the comments. The author of the original blog post that inspired this one contacted me. She has taken it down and apologized. She also seemed like she was still beating herself up over it even after I accepted that apology, so I want to state openly that she doesn’t need to. In talking to her, I’m reminded again that being non-neurotypical so often means communicating is terrifying and awkward and hard. It definitely still is for me, especially in person. We all make mistakes. We all struggle with what we mean to say not ending up being what we actually say. Character is in how we respond to our mistakes, and she showed she had character by caring when her post so severely triggered me. If (when – I have ADHD after all!) I ever upset someone with my writing, I hope my readers will tell me so I can have the chance to apologize, too.

That is something that none of the other déjà voodoo writers I have ever contacted about internal stigma – including Dysautonomia International, who puts that kind of stuff on main public pages – have ever done. I think it was very brave of her. I’m leaving this post up because I’ve seen a lot more than just one déjà voodoo post out there, and, to date, only one person has said: “I’m sorry.” There are a lot of folks who still need to see this post.

But, the author of the post that originally inspired this one is no longer counted as one of those people in my book. I genuinely wish her the best in her blogging tenure, and I hope others will too. Being non-neurotypical is rough. We both know it. It’s important to call out internal stigma, but it’s equally important that we forgive mistakes within a community of people for whom just communicating at all is often fraught with fear and memories of years of failed attempts. Point out mistakes, then welcome their makers back into the community with open arms immediately as soon as they make a genuine attempt to correct them. If we continue ostracizing our own internally long after they have apologized, then we risk becoming abusers in yet another way. We risk becoming those emotional abusers who keep torturing people for their “mistakes” years later without ever giving them a way to move on. I’ve also been on the receiving end of that type of abuse, and I don’t wish it on anyone who cares enough reach out to me.

Do you ever experience blog post déjà voodoo? You know, where you’d think you’ve written about a topic so many times by now that you could cease having to keep writing about it? Where you’d think you could finally put a pin in it? Yet, somehow, the thing that upsets you so much just keeps creeping up, zombie-like, such that you can’t let it rest?

I owe my subconscious an apology. I mocked it a few days ago for being so far up on its soapbox that it wrote an entire novel in my dreams about the need for internal unity among those of us with chronic physical, mental or developmental disabilities. I laughed because I’d written multiple blog posts on the topic already, and shouldn’t that be enough?

I should have understood that my chronically traumatized brain is so obsessed with the topic because it knows firsthand from too many years of experience what my heart doesn’t quite know how to accept: people don’t change. People will always seek to protect themselves first by selling others out. Or, at least most will. So, I’ll probably be writing about why that doesn’t work and desperately trying to appeal to the better angels of the blogger community for the rest of my blogging days.

I read another déjà voodoo blog post just now. This time it wasn’t dysautonomia vs. anxiety or PTSD vs. “true” mental illness. In this one, the author felt that the only way to express how life-altering it is to have ASD was to compare it to how life-altering it isn’t to have ADHD. The only way to gain acceptance for one type of neurodiversity was at the expense of another. The author stated their opinion that ADHD – while technically a form of neurodiversity – barely qualified for the category because it was simply an “accessory” diagnosis that could be “practically nullified” by treatment. (Yes, those were their chosen words.)

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Improv #10: Seven Things for Self-Care

*Knock knock*

“Who’s there?”

“Seven”

“Seven Who?”

“Seven Eleven…”

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

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

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

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

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Eye Rate

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

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

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