*In the 9th Circle of Hell, bed bugs warrant a CW. Respect your mental health when reading.*
I have a standard caveat on my blog that I will change minor details or abstract timelines for the sake of maintaining anonymity. Despite that claim – sensible though it probably would be to actually do that – to my knowledge, I have only actually changed two tiny details about my life for my blog. Both have been about the specifics of what my workplace produces and to whom it markets it, which are probably sensible precautions given my bully-of-a-boss’s penchant for firing people. The 9th Circle of Hell seems to think themselves so far above the law I probably could call out the abusers by name and they’d just laugh that they were still invincible, but my boss might just be the kind to fire a person on suspicion alone because he thinks a random anonymous blog with less than 1,000 followers could possibly be about him.
I’ve not changed any details about the 9th Circle of Hell. All the crap I’ve written about it – past and present – is true. It really is that bad. In fact, if anything, what I’ve written to date on my blog remains only a sanitized version that leaves off a lot of the nitty-gritty everyday horrible things I’ve experienced dealing with that state in favor of sharing the biggest atrocities. I’ll stay anonymous forever for my own and others’ veil of pretended protection, but it turns out I can’t actually alter details of my life when talking about the 9th Circle of Hell. I can’t even always be as vague as my PTSD hypervigilance thinks would be prudent. My PTSD brain simultaneously wants to protect itself by maintaining a veil of “generic everyman-ness” to my story, yet also keeps demanding I share details that are very specific to my story. It can no longer contain all of the things that have happened within and because of that state without the refuse overflowing, and my blog seems the safest place to dump the trauma wastewater.
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.)
CW: Don’t read this if you are in any sort of a bad place. I’m physically safe. I’m mentally shattered. You don’t need to do anything. There’s nothing anyone can do anyway unless they had serious political connections. I am not a danger to myself or others. No, the danger, as always, is from others, and this post is more about trying to survive their latest devastation. This post is about how it feels like it’s getting harder and harder to try to survive. It just never ends. It’s a dark post – even though I promise I’m safe – so please read with caution. I’m the scant protection someone else has from the 9th Circle of Hell. I won’t ever abandon that responsibility to ease my own pain. I’ve been on the other end of that type of abandonment and still feel the hurt and weight of the responsibility it left me with. I will survive this and keep fighting as best I can. I just wish deeply right now that I didn’t have to.
*CW: oblique references to intense subject matter, but without details.
The human brain – especially the ADHD brain – has a way of latching on to the most inane of details. It dutifully encodes what the original package writing was on the box of records carried into the courtroom itself. It encodes the original sticker price of the random hardcopy book purchased in a vain attempt at “distraction” from it all.
It immediately calls to mind the two right shoes accidentally brought by the Partner instead of one complete set, necessitating a last minute scramble to find a replacement pair, and it recites the same lame attempts at humor that at least he was doubly in the right instead of the wrong without missing a beat.
It recalls every minute of the three-hour wait for pizza the night before – really, does the whole of the 9th Circle of Hell have to order pizza at the same time on the same random night? – and the raiding of the hotel’s snack bar during the wait. It readily embraces the fact that cheez whiz is a thing in the Midwest and that it might actually be a dysautonomiac’s perfect food. (Four crackers with cheez whiz can literally top salt pills for raw salt content. The brain won’t soon forget that…)
The human brain can also dutifully remember all the relevant facts of the situation that brought it to Hell and where the injustices lie. It can never forget them, in fact, as even in sleep it will remember the things it’s experienced these past few months. It can remember clever lines from our counsel – though only with the help of its owner’s honed skill of taking accurate notes even while feeling thoroughly numbed out or overwhelmed by the enormity of what this state permits in ignoring their own regulations and allowing things to get this bad. It can remember the specific beaded bracelet it directed its owner to chose for the day and why it chose it, and the flavor of the Gatorade it instructed the arms to raise up to the mouth to drink before it signaled that same mouth to open up and speak.
It can remember being told its owner did a good job in her testimony afterward: that the raw anger she displayed (contained within court-appropriate voice and following proper protocols, of course) as she spit out the rights violations both in the original situation and in the posthoc cover-ups was probably more convincing than anything she specifically articulated. It can remember that it supposedly conveyed “wronged” in a tone that bald facts alone, sadly, could never hope to match, because facts don’t really matter in these situations. Appearances matter far more.
The human brain can even remember that it did actually prevail that day. (Though, it would immediately remember not to get too congratulatory about one “victory.” It remembers this is a complex situation, and there is more yet to address before all is said and done. And, sadly, it remembers from long experience that even if everything were to go “doubly right” the entire rest of the way, it would still only be addressing prior wrongs. It wouldn’t be making a dent in the larger system that sustains these kinds of wrongs with immutable indifference and laxity. The human brain can remember what it is like to know it has only put another band-aid on a gaping wound.)
The human brain can remember many things, and it can imagine and plan for so many more. It’s funny, then, that it can’t seem to be bothered to allow its owner to truly remember much of her actual testimony itself, even while it remembers the preparation and the debriefing. Oh, and her dinner.
The human brain, it turns out, is equally great at filtering out as it is at taking in. It has a mind of its own, and it wields that power with the conviction that it knows better than its owner what she is strong enough to remember and what is better for it to quietly disperse into vague impressions.
Oh, an owner might argue that her own testimony should rank a bit higher in the priority list than cold pizza, but that’s the frustrating thing about the human brain’s algorithm. Cold pizza? Frustrating, yes, but it’s logical and vaguely predictable and fits within an ordered world. The brain likes safe, predictable worlds, even when they are predictably frustrating. That can make the cut.
Testifying? Well, that requires not just reliving all the fear and horror that went into experiencing the situation originally, but adding some new on top, because “justice” is not a word the brain ever associated with the 9th Circle of Hell. Testifying is confronting the illogical, the inexplicable and the disordered. Testifying is confronting that the world isn’t safe, and the logical brain thinks it is most logical to shield its owner from that world as best it can.
The human brain is, admittedly, a bit confused as to why there isn’t a surgeon general’s warning “for those with diagnosed autonomic nervous system dysfunction only” printed on every can of cheez whiz, but it can choose to remember cheez whiz without needing to understand or, frankly care why. It can’t choose to let its owner remember her testimony without risking her caring too much – or worse, numbing to the point of not caring and risking becoming no better than those she fights against. So, rather than trust her coping skills it filters those bits right out. It files such things away in a special category called “trauma memories” for her own protection.
The human brain is the most biologically intricate piece of machinery on the planet, and all those millions of years of evolution have led it to an algorithmically optimal solution for handling trauma. Until the world becomes a much safer and saner place than it is today, the safest bet, it believes, is to offer its owner only cheez whiz for brains.
Assessment (noun): the act of assessing; appraisal; evaluation
Also known as a determination of what a bunch of asses meant.
Psychiatrists have fifteen minutes with their patients, so it’s already a reasonable assumption that they base the majority of their assessments of patients on immediate impressions, stereotypes and whatever was current when they graduated medical school and last bothered to read a journal article – which could be fifteen years or more prior.
There aren’t a ton of psychiatrists covered by my insurance, period. Even “good” insurance in America is rarely good for mental health. There are even fewer who prescribe stimulants for ADHD. Once a month I make time out of my weekend to go see one of those to obtain a hand-carry prescription. I then take that hand-carry prescription to my pharmacy to be filled, where I am asked to verify my identity with a form of ID at least twice, report my address, and then have the exact date and time that prescription was filled entered into a state database to ensure I don’t fill the next month’s allotment even one single minute early.*
I am not harassed during any of this process because I present well. I’m “high functioning,” as I’m repeatedly told. However, my psychiatrist’s office isn’t trauma informed – or even that nice to the majority of their patients. They are one of the few that will take those on public insurance, and they don’t feel they have to be nice, I guess. They’ll fill their waiting rooms and make their money either way. The waiting room is regularly filled with a very diverse set of clients, many of whom have ADHD. I go there even though there are clear issues because they are closest to my home and offer weekend appointments. I don’t even know if the other options would be better, so I just stick with convenience. I hate a lot of what I see there, but I really do need weekend appointments badly given how late I work. I don’t think I could maintain that “high-functioning” job that helps so much in the mental health world if I had to take time off every month to go to a psychiatrist appointment that takes an hour (even though we’re only actually seen for 15 minutes) out of the business day. I do have a couple of other options since my insurance isn’t public, but not many.
It saddens me so much that others don’t even get to weigh those limited pros and cons in their choice of psychiatrists to help them with disorders that should be no more shameful than a broken leg or diabetes.
Happy Mother’s Day to those who are mothers or have the kind of relationship with theirs where they can celebrate them. Happy Mother’s Day also to the newly pregnant. Two of my friends delivered that other form of joyous news today. It’s kind of an auspicious day to announce that, I guess. I wish them the best for the next stage of their lives, but I have to admit it makes me kind of sad for reasons that I keep telling myself make no real sense.
I look at a baby announcement or a Mother’s Day card and feel a kind of wistful, painful longing. I’m not the classic type of woman you’d expect to feel conflicted about anything to do with babies. I’m not single. I have a Partner who would make a great dad. I’m not infertile – or at least if I am I don’t know it yet. So, effectively, I’m Schrodinger’s fertile, and that’s good enough. I could stop my birth control tomorrow if I wanted to. And yet…
PTSD has as one of its many frustrating symptoms something called a sense of foreshortened future. Sometimes it expresses as a feeling that a person’s life will inexplicably be cut short. For me, though, it expresses solidly in the alternate type wherein I just never meet the same life milestones as others. For me, it means a kind of empty “next” syndrome. I could choose to start a family with my Partner at any time. And yet…
CW: This title was meant to be humorous, but what I wrote initially didn’t end up humorous. The title became both a play on words and not one simultaneously. I did what I did the last time I tried to write about one thing but ended up writing about another. I split the post. The parts where I reference things going on with a family member may not be suitable for those who are vulnerable in their mental health to read at this time. Feel free to skip this post if necessary. There is a Pt. 2 that reflects the more banal slice of life to follow. I’ve mentioned before that I am experienced at living with the dichotomies, so both parts of the post are simultaneously true. I’m both having a rough time and still myself, you know? I still struggle one night and go to Improv another. It’s how I (mostly) maintain my mental health. I don’t apologize for that self-care. (I don’t. The bully-in-my-brain doesn’t technically apologize for the humor part. Just for the rough part. A$$hole.)
CW: Discussions of systematic abuse of various types.
This post has a much longer introduction here that explains why I am posting it today. Read that first if you want the full backstory (or forward story as the case may be). I won’t give the original date of this journal article. I’m already quoting almost verbatim the headline I found when I looked up the new hospital system I’d been referred to for outpatient treatment for ADHD in the new state I once hoped would be better than the one I grew up in. If I dated the journal article, I’d probably be sued for libel for mentioning it without having been a direct victim. I’m sure that hospital employs an army of lawyers to keep that article well buried, especially when referenced by families not directly involved. I wasn’t directly involved – in that abuse case, at least. I’ve been involved in others. I’ve been the family member speaking out against systemic abuse, and I’ve been threatened with libel for daring to speak the truth. It shouldn’t be libel when it’s true – but, hey, that this is the world we live in and the country we live in.
Go ahead and look up the article that I found in the city papers after just moving to a new city that led me to write the journal article below. You’ll find it. You will also – if you dig far enough to find that one – find dozens of others that are similar from other states. You’ll find enough that maybe you will wonder which article was the one referenced in this journal article. You’ll find enough that maybe you’ll take it a step further and wonder which of those articles is the one written about my original trauma. I welcome you to figure it out if you can, but I know what’s in print. I know that my little corner of the journalism world is buried behind a whole lot more recent stories of abuse. Stop and think about that for a bit. Then read this very meta post about a girl who was in one of those stories in the paper years and years ago later moving to a place she hoped would be better, but only finding in her new city paper another one of those stories of abuse, now written about the clinic she had just been referred to for her own care. Read her writing about her attempts to process a world in which this keeps happening and the therapist who was assigned to help her deal with it was part of the system itself. Then process that it never stopped happening for her even this week – and that’s why there is a whole separate post’s worth of introduction to this meta-post in addition to the post she apparently felt she needed to write just now. Is that a big enough picture for readers to believe that her trauma was real and that action needs to be taken to stop it from happening to others?
CW: Discussions of systematic abuse of various types.
This week has not been a good week. I’ve said before that I’m a primary caregiver (along with another family member who still resides in the state) of someone who needs full-time 24/7 medical, disability and mental health care beyond what is possible for us to provide at home. I’ve said before that one of the organizations licensed to provide such care was demonstrably abusive to my family member, and that we received no justice when we fought the state to try to close that organization even with all of our carefully gathered evidence. That organization is still open, still providing services to others, and that thought never leaves my nightmares.We removed my family member from that particular situation, but we didn’t change the system.
Over the years, other organizations that have been licensed providers in that region have been found to be abusive, too. The same state services that should have been protecting society’s most vulnerable have shielded the providers more than then they have ever shielded their patients. They have dolled out only slaps on the wrist, but slaps on the wrist don’t change anything. In rare instances, organizations have closed. (I’ll leave to your imagination what had to have been found for that to happen given what we discovered that didn’t lead to closure.) But, in most instances, they haven’t. I grew up with an acute awareness of just how common this kind of abuse is, how unlikely anyone is to help, and with further ramifications of the toll of that early exposure to trauma that then happened to me in other ways because the nature of early exposure to trauma is that it begets further situations that cause trauma for any person who grew up with it.
I fled from that state as soon as I could, and at one point I was naive enough to believe things would be better in other states. I then discovered decade-plus waiting lists for disability services in other states, and, quite frankly, that the abusive situations I hoped were unique to the Red State I grew up in happened in the Blue States, too. I am still on the list to try and re-establish services in the state I currently live in, but this Messages in a Bottle is both a current story of something that happened in the Red State I call the 9th Circle of Hell this week and a past story that happened in the Blue State in which I currently reside.
Purple is my favorite color. What shade? Every shade in the Crayola Big Box. I even count magenta as an honorary purple.
Early on, it was indigo. I have a recording of my younger sibling’s first word. While my parents tried to document the milestone, four-year-old Lavender can be heard interjecting her thoughts.
Everyone’s continued focus on a single word was rather underwhelming. (This dominating-the-conversation habit would also get her into trouble in preschool until her parents gave up and pulled her out. How was her ADHD not diagnosed until adulthood?) Lavender felt that her parents should “make [her sibling] say indigo,” which she explained was her favorite color.
I am, thus, amused when someone on the Internet says that millennials with ADHD are Indigo Children.