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.

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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.

Improv #14: Sing the Moment

*Knock knock*

“Who’s there?”

“The Perfect Moment”

….

….

“The Perfect Moment who?”

“It’s too late. You already missed it.”

I could use this post to say something vaguely motivational like “feel the fear and do it away” or that it’s possible to “seize the day,” even with chronic physical or mental health challenges. I could use this post to talk about FOMO or the crash that occurs when the future calls in a lien on the present in payment for spoons borrowed against it. I could do any of those things, but I won’t. I may be the only guru I trust, but I only (mostly?) trust myself because I don’t attempt to say the kinds of motivational stuff even I can’t listen to without rolling my eyes. I still prefer snark over spirituality.

Also, I know that I couldn’t back those topics up if I tried. I mean, how could I plausibly talk about seizing a moment when I have no idea what a moment even feels like?

Did I ever mention that researchers out there have amassed evidence that, at heart, ADHD is a neurologic deficit in time perception? Our sense of time is non-neurotypical, to say the least, and totally gone at worst.

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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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The Trolley Persecutor

CW: keeping secrets about child abuse, descriptions of child abuse, discussions of death and systemic abuse, swearing, and standard “never go to the 9th Circle of Hell” trauma.

I’ve said before that I’m open to being challenged on even very sensitive topics on this blog, as long as basic trust and safety is maintained. One blogger I really respect, Mishka of Crafts, Chronic Illness and Adulting, challenged me with her comments on my last blog post exactly because she never doubted me when I said that, in the 9th Circle of Hell, a profoundly disabled minor child in the foster system would probably have died without a protector. If that same disabled adult nearly died from systemic abuse as an adult even with multiple guardians attempting to protect him, what hope would the same child split up from his sibling have had?

And, since that is true, what choice really did any “family” member have but to stay silent about my own abuse – the same way I did – to protect him? I was struggling with that question in the post itself, and, knowing more now about Mishka’s history, I can see why she was struggling. The stereotype of the “abused child” is that they become the abuser. But, really, that is quite rare. The vast majority of us only abuse ourselves. And, well, was that adult who warped my reality by not only staying silent really not also destroying herself? How do you “choose” between one child’s possible death and the warping of another child’s soul, sense of self and continuity of memory through denying what is true until they have to fragment their reality into a dissociative disorder to survive it without tearing off pieces of your already tattered soul too?

I struggled with that question when I wrote the post. I struggled again when I thought how to answer Mishka. I – who has written on her own Glossary of Terms that ADHD’s one upside is that it enables me to think so far outside the box that I “don’t know where the box is” – couldn’t think outside of “pick one abusive situation or another.”

Trauma keeps us in a box of our abusers’ making. We are ever so good at convincing ourselves that we are both all-powerful and powerless at the same time. We are so powerful that somehow if we’d just said the right thing, done the right thing, recognized the tells, and played the game, we could have prevented what happened to us. We are so expert at controlling others that if we fail to keep them from abusing us, we believe at heart that we are to blame. Yet, we are simultaneously so powerless that when an abusive system sets up two abusive choices, we are too powerless within our abusers’ reality to ever question the foundations upon which it was built.

My Partner, who has no ACES, has no such coercively imposed limitations, and no such moral doubt as to whether my “family” member should ever be excused. My Partner called my life the ‘Murican Red State version of the good-old philosophical “Trolley Problem.” If an out-of-control trolley is going to run over five people if it stays on the track it is on, but you could flip a switch and have it only run over one person, would you? Most people would say yes, but the vast majority of people never even consider any of the other options. Most people never think outside the box to realize that staying within two fundamentally abusive choices is victimizing to the switch-thrower as much as it is to the six people on the tracks and that perhaps the only solution is to break the rules themselves. A person could throw themselves in front of the trolley. They could daringly leap aboard the train and try to speed it up to the point where it derailed when it hit the track switch at a dizzying rate of speed. (I live in the Northeast. More than one Amtrak train has derailed by taking a track change at too high a speed. It could work!)

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Improv #11: I’m Mrs. Bright Blogs

*Knock knock*

“Who’s there?”

“The Bright Side”

“The Bright Side Who?”

“The Bright Side Who Doesn’t Actually Exist”

“Oh. Then I guess this is just another dissociative conversation with the bully-in-my-brain, then?”

“You catch on not quickly at all, don’t you? Also, your joke sucks.”

I’m fairly sure the first rule of building a blog audience is “own your domain name so you can engage in SEO and promote yourself across social media.” I failed that rule the moment I set up my account because I was too afraid to pay for an anonymous blog with a non-anonymous credit card. I also do not have the spoons to maintain more than one social media site, period.

I maintain a free site even though my lack of spoons has gradually led me to dial back on the other paranoid hoops I used to jump through to maintain anonymity. Part of my expression of a PTSD sense of foreshortened future is a fear that, if I did dare to make that all-of-$36-dollar annual investment in a domain name, I’d immediately go broke. I would be inviting the wrong kind of irony magnet. Then, my audience accustomed to something simple like “lavenderandlevity.com” would all abandon me as soon as continuing to follow me required the modicum of effort to bookmark “lavenderandlevity.wordpress.com” again. If you follow me while I use the free version, I suppose you’ll probably follow me on a paid version. But, would those who would only follow a paid version ever bother to reverse course? Do I really even want followers for whom I have to write witty, engaging content all the time? C-PTSD says just stick with free: I’ll never have to fear inevitable future rejection from potential future financial disaster. C-PTSD is dark.

Which sucks because…

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Where Would the NHS Rank Trauma on the Pain Scale?

Hi everyone,

First, I want to say thank you to everyone who talked me through the past two days. I made it out of that Sheraton break room eventually, and I did manage to give my presentation the next day. I know some people asked what I was presenting on, but in the world of research – startup, policy, or academia – your research is probably the most tell-tale marker of your identity. If I told you about my presentation, I’d be telling you who I was, who my bully-of-a-boss was, and – by extension – who my sibling and all the various systemic abusers in the 9th Circle of Hell were all in one easy Google search. I’m sorry, that doesn’t feel safe. Hopefully, the grad students and professional researchers among you understand.

The bedbug place lost its license, albeit not for the reasons I originally expected. I still don’t know the reason. They also appear to have chosen not to undergo the appeals process they – as providers – are entitled to in the 9th Circle of Hell. (The 9th Circle of Hell, of course, has no corresponding client appeals process or any independent way to determine the outcomes of license inspections. Yes, this is technically a violation of federal law, for those few of you in the know who are wondering, but it has been ignored by the feds for at least two years.) They packed up, fired their employees, and for hours it seemed like they were prepared to dump several facilities worth of patients on the street.

Continue reading “Where Would the NHS Rank Trauma on the Pain Scale?”

Tools of the Trade Show

CW: Panic attacks in progress and the reasons for them.

So, this is not the type of post I normally write. I’m not even sure it qualifies as a true post. If this were Facebook, I’d be vaguebooking to the point of parody. However, I will explain more later, when I feel able to and when I know more. So, I ask you all to stick with me for the moment.

I’m currently sitting in the staff break area at a hotel. I’m on my second week back to work and attending a conference.

And – because my life is a perfect shit storm – I just got a call about the 9th Circle of Hell. The situation at the bedbug place didn’t resolve after all, despite what it seemed. And – because I am apparently cursed – it fell apart even more while I was traveling, instead of safely working remotely where I could at least claim the dignity of falling apart in private.

I’m supposed to be presenting tomorrow, damn it! Yet, before that I have to somehow get from hiding with the cup of tea handed to me by a kind hotel staff member, trying to keep myself from completely shutting down by writing incoherent blog posts, to having a voice strong enough to give a presentation on data.

I need some serious help to get there. The chasm between those two states of Lavender existence seems insurmountable at the moment. And, the bully-in-my-brain, using the time-worn tool of the trade of the panic spiral, thinks I’ll crash and burn if I try to do anything about either the presentation or the 9th Circle of Hell.

Could you all just tell me that:

1) You believe me that I don’t want all the bad things that have happened this year to keep happening. You believe me that if I knew how to escape this systemic trap, I would. (I fear my colleagues probably won’t understand if this situation somehow impacts my ability to present tomorrow. I’m not sure I can handle them not.)

and

2) You believe that I can somehow pull myself together and make it through this. I can’t reach my Partner. I’ve called him multiple times. I’m in a city I don’t know. I’m here with coworkers who will likely follow my boss’s lead on how to treat personal situations to protect themselves from his wrath even though he himself isn’t onsite. I’m feeling like I just can’t anymore. It’s too much. I’m overwhelmed and frozen and probably way more dissociated than I should safely be in public. The idea of leaving this breakroom seems thoroughly impossible right now, though objectively I know that three hours ago I was feeling pretty competent and in control, and technically I’m still the same Lavender who felt that way not so long ago.

I need some serious “buffering the effects of trauma through witnessing and not shaming” right now, if it’s not too much to ask…

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

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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