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…

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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Messages in a Bottle #7.2: 525,600 Words

Written at some point prior in May 2018, intended for 5-26-18, my one-year blogiversary. The intro to this post (including why it is so delayed) is here.

525,600 minutes, 525,000 moments so dear.

525,600 minutes – how do you measure, measure a year?

In daylights, in sunsets, in midnights, in cups of coffee.

In inches, in miles, in laughter, in strife.

In 525,600 minutes – how do you measure a year in the life?

How about love? How about love? How about love? Measure in love. Seasons of

love.

525,600 minutes! 525,000 journeys to plan. 525,600 minutes – how can you measure

the life of a woman or man?

In truths that she learned, or in times that he cried. In bridges he burned, or

the way that she died. (don’t worry, not a tw, despite what the lyric might suggest!)

It’s time now to sing out, though the story never ends

Let’s celebrate remember a year in the life of friends

I had to perform that song as a pledge event for my sorority in college. Pledging unending sisterhood or some such. Does it surprise anyone that I joined a sorority? Honestly, it kind of surprises me, too. I’m also kind of surprised I didn’t fall over while attempting to vaguely “dance.” Undiagnosed Ehlers-Danlos Syndrome explains a lot in hindsight about why I got kicked out of ballet class (and soccer) and hidden away in the back where no one could see me for that college initiation “performance.” But, rush was a thing that was a fairly big event even at my geeky college. I did it as something to do to fit in in a new place, and I was sufficiently mystified when offered a bid that I accepted it partly on some vague grounds of “leadership activities look good for grad school” and partly some deeper, “you mean there might be a school where I’m actually vaguely acceptable for who I am?” I am a very forward planner and easily flattered by simply not being rejected.

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Blog Awards Series #3/Messages in a Bottle #7.1: 525,600 Moments of Blog Awards

Today’s Questions are courtesy of Ease the Ride. They are both the hardest questions and the easiest questions to answer of all the blog awards, because there are really only three of them, and I had previously written a blogiversary post that, in theory, should have answered all of them. It was the post I intended to post for my one-year blog anniversary. I never posted it, so now it has become a blog award. The questions are as follows:

1) Write a paragraph of something positive about yourself

2) Briefly tell the story of your blog

3) Give two pieces of advice to new bloggers.

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Fully Reversing My (Claim to) Mental Illness?

Do these two Pinterest pins seem equivalent to you?

I’m going to ignore for a moment the implication by a UK PTSD charity that PTSD is “fully reversible” with CBT and EMDR. I’ve tried both, and I’m still waiting for that reversal. (Of course, given how many unique traumas the 9th Circle of Hell as dumped on my brain, including these past two months, how would I know if one ’bout’ of PTSD had ever cleared up before another re-inserted itself?!)

I want to point out, instead, the claim on the left that “PTSD is NOT a Mental Illness.”

I’d like to claim I’ve been doing something really productive with my not-FMLA. However, all I did Thursday was be kept up all night by nightmares preceding my most recent meeting with 9th Circle of Hell officials, then crash out after it and sleep for 15 hours. Apparently, my body thinks that “self-care” means hours of watching non-triggering reality television (think shows like Naked and Afraid where survivalists pit themselves against the elements or Wicked Tuna, where fishermen pit themselves against fish) and staring robotically at Pinterest at 3am when that reality television has been replaced by infomercials. My body thinks that “self-care” means not sleeping, then sleeping long enough to try and recoup six months of spoons at once after physical distress overwhelms mental distress. Would that spoons worked that way, body…

Pinterest really wants me to pin both images above. They keep showing up in my feed. I don’t have a particular problem with the image on the right. (I did read once that Healthy Place promotes some pseudo-scientific claims alongside their generally sensitive memes, though, so I’m still careful about anything they produce.) I do have a problem with the image on the left. Isn’t PTSD just mental illness resulting from self-protective mechanisms persisting so long after psychological (and physical, emotional, sexual and bullying, too!) abuse until they ultimately become maladaptive?

The definition of mental illness is a set of health conditions involving changes in emotion, thinking or behavior that cause distress and difficulties in functioning for an individual. While dissociation has occasionally been neuroprotective during the worst abuse, I haven’t found that being unable to speak while my boss yells at me as I watch the encounter from outside my body to be anything other than “distressing.” I also have yet to see how nightmares are a viable part of any coping strategy – even a maladaptive one – even during periods of active abuse. Abuse and the covering up of abuse have resulted in most-likely permanent changes to my brain that cause me significant distress and difficulties in functioning. That sounds like mental illness to me.

While I deeply hate that other people caused those changes by being abusive assholes (especially abusive assholes that have, too often, gotten away with it), I don’t see how the fact my brain changes were done to me somehow makes me superior to someone who is distressed and impaired in their functioning by endogenous Generalized Anxiety Disorder or Major Depressive Disorder. I don’t see how the fact that PTSD is, by definition, exogenous spares it from being a mental illness. The fact that advocacy groups would try so hard to suggest it does spare it gives off an unpleasant whiff of mental illness stigma. What is the purpose of going to great artistic lengths to convince others that PTSD isn’t a mental illness other than to distance it from that a thing that is somehow lesser, namely mental illness?

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Absent without (Family Medical) Leave

I know the DSM-V no longer includes the term “nervous breakdown” anymore. I’m fairly confident even if it did include it, since the origins of my panic attacks, crying, dissociation, and depression are quite well known, I’d still just end up labeled with the “dissociative subtype” of PTSD (aka the compromise that is supposed to cover C-PTSD).

I have had to deal with the 9th Circle of Hell about this damn most recent abuse and medical-neglect-leading-to-multiple-medical-crises case three times within four weeks. I will have to go back to Hell again this month. I’m fielding calls on top of that. I’ve spent a quarter of my take-home pay for the past few months on that shithole, be it in travel fees, medical bills, lawyer’s fees, etc. I’m not even the only one financially contributing to fighting for “care”, but when the cost of failure is potentially life and limb, I’m not questioning it so long as I still have the money. The origins of my distress are not a mystery and fit neatly into the DSM-V trauma disorders bucket. I doubt I’d be said to be having a nervous breakdown even if the term was still diagnostic.

Add on top of the trauma situation itself a boss who lost it with me over email when I politely sent him a notice that I could no longer attend a scheduled internal presentation because I had to speak to state regulators in the 9th of Circle of Hell during that time and was given no choice of times, though, and – all technicalities aside – I think I’m having a nervous breakdown.

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