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

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

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

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

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

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

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

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

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

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

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

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<Image Text>: “You can’t make this shit up.” – Me describing my life.

Emotional flashbacks are tricky to recognize. You can become thoroughly caught up in the fight/flight/freeze responses of the past without even realizing you have shifted. And, even if you do realize you are in one, it can be tricky to recognize to what, exactly, you are flashing back. There are, after all, so many discreet instances of various types of trauma in C-PTSD that they all blend together into one continuous mess. Emotional flashbacks rarely have a clear visual component, whether projected in the real world as per the traditional public conception of a PTSD “flashback” or just replaying a memory from your personal mental mindfield.

Nothing about 2018 was unique, except possibly learning for sure that others knew all along about my childhood trauma and, frankly, my dear didn’t give a damn. I’ve had to testify against abusive group homes before. I’ve had my grad program tell me, “Defend the same week as I fought past abuse or forgo everything by dropping out.” That’s not really that different from a boss whose first words upon learning about the life-or-death stakes of 2018  were that bothering him with that knowledge constituted proof that I was a poor-performer, that I’d always been one, and that I’d probably always be one and whose last words before I went on not-FMLA were, “You have three months. Deal with the issue and return to being useful or this company will have no more use for you.” (Let it be known that his claims about my performance have no official backing. Threats aside, my boss has always managed to be in the right mood on my actual performance review day to rate me a high performer on paper, even if he gaslights that reality later whenever he finds it convenient. But, that doesn’t help much when it’s his company.) Hell, I’ve even had to testify to abuse enablers in the 9th Circle of Hell both of those times the same week as my birthday. And, I already hated my birthday because not correctly perceiving social schemas around birthdays as an undiagnosed ADHD child made them dreaded dates as far back as I can remember.

It really comes as no surprise, then, that it’s typically hard for me to determine what I am reliving in an emotional flashback (or even that I’m in one). It comes as more of a surprise when I do realize. There are only two instances where I can even predict that I’ll have an emotional flashback, much less to what specific memory.

Messages in a Bottle #9: The Archivist

This CW is so important it should be in neon flashing lights. This is a serious post. Serious like: mentions of 9th Circle of Hell current systemic abuse, mentions of the same kind of systemic abuse on another blog, and mentions of past suicidal feelings and coercive control. I really meant it when I said the lights were off this month, so please please be careful when reading this blog post. There is no date on this “past” post because it’s not truly a post written in the past. It’s a memory, from a time when I would never have written anything down, that has been bothering me. I think I need to write to exorcize that old ghost and thus fight my new demons more effectively. Be safe.

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.

Remote Control

Image: Toothbrush says “Sometimes I feel that I have the worst job in the world!” Toilet paper thinks in reply, “Ya…right!”

If a bully-of-a-boss screams in an office, and there is no Lavender around to hear it, can he still control her amygdalar fear response?

We’re about to find out.

I am now a 100% remote employee?!

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.

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.)

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.

RE: Your Brains

Source: Pinterest

CW: Indirect descriptions of PTSD symptoms, the aftermath of trauma, and workplace bullying.

Have you ever wondered what a zombie with an office job would look like? If you’ve heard Jonathan Coulton’s excellent “RE: Your Brains,” you don’t have to ask. If you haven’t, I do suggest you listen to it eventually, but there’s no rush.

After all, you’re talking to one right now. That last trip to the 9th Circle of Hell – and the circumstances that sent me there – have liquified my last functioning synapse. Depression, anxiety and the more visible (and thus problematic in an open office) symptoms on the PTSD laundry list have finally cracked my normally fairly impenetrable walls of gallows humor, coffee, goth opera rock music, comfort food, fluffy urban fantasy escapism,  and even my devotion to appearing fine as a survival instinct. My last subconscious defense against collapsing into a puddle at work? Zombification, aka dissociation.