Long Walks and Candlelight Zen-ers

I sometimes think my Partner missed his life’s calling as a therapist, but whenever I mention this to him he reminds me that the only “people” he wants to be observant of and “people” with on a regular basis are me (and maybe the cat, who is unofficially a “people,” too!)

As I’ve said before, my Partner was instrumental in helping me to identify that my “personal flaws” were really indications of ADHD, in obtaining my formal ADHD diagnosis (functioning as my “family” interview in lieu of my family of origin, who should never be trusted to speak on my behalf, ever) and also helping me come to terms with the idea that having ADHD, which is sometimes classified as a “learning disability,” doesn’t invalidate my elite school undergraduate degree or the grueling work I did to complete my thesis. In fact, we largely worked out that ADHD was even something to consider because he read an Atlantic article about an Ivy League-graduate female writing about her experiences, handed it to me, and went, “That’s you, and before you freak out, note the ADHD didn’t mean she didn’t graduate from a top tier university and work for a competitive magazine. So, it doesn’t mean you are stupid at all.”

He has never really stopped knowing me better than I know myself since that first insight. He worked out a lot of my personal trauma history from context clues before I ever felt comfortable sharing it (or even acknowledging to myself that those experiences “qualified” as trauma.) He also originally came up with many of my core grounding techniques. He’s the one who worked out, for instance, that stating the date and time isn’t as effective as one might think during a dissociative episode for someone who also has ADHD, as even when I am completely “in the present” I am often still completely obvious to the date and day! He’s the one who suggested instead simply saying, “You are here. This is now.” And – when I asked him in 2018 what the point was of reminding myself that it was the “here” and “now” (date non-specific because I wouldn’t have said any date in childhood, so if I’m saying anything at all, it’s already not childhood) when 2018 was so damn close to those other childhood and previous 9th Circle of Hell adult trauma memories that it felt indistinguishable – he is the one who calmly replied, “This year is shit. It’s 90% the same shit as the shit you’ve been through in the past. But, that makes it even more important that you remember that it is, at the same time, still 10% different shit. If you must live through current trauma, don’t torture yourself further by also reliving your past similar trauma all at once.” ADHD all-or-none non-linear conceptions of time do me no favors on that front.

He’s the one who came up with the idea of wearing beaded bracelets, keeping a reality journal, and recording my own “guided meditations” in safe, happy places to remind myself that happiness is possible when in the depths of Hell. I still fill out my reality journal daily. I still wear beaded bracelets and remind myself that, “You are here” and “This is now.” And, I still struggle with feeling triggered – without necessarily confusing whether I am actively safe for the moment – because traumaversaries are a thing.

Standard therapy for trigger management, dealing with emotional flashbacks and grounding bugs me for multiple reasons. The biggest reason tends to be it always starts from the assumption that a person is safe in their present. That was not the case for me in 2018, and it is not the case today for many others who are suffering from complex PTSD and/or dissociation while simultaneously living in poverty, chronically ill, of color in an intolerant neighborhood, disabled and/or still too young to live independently to escape their childhood abusers. It is entirely possible to have PTSD while still also being actively (re)traumatized.

Another thing that bugs me is that grounding techniques tend to be very one-size-fits-all. The same techniques are recommended whether a person is currently experiencing an active mental health crisis, engaging in day-to-day mental-health management, or “just” feeling a bit more triggered than normal because of a traumaversary. I don’t understand why therapists assume that engaging in the same things that grounded me in 2018 – the big guns of my mental health management – couldn’t actually re-trigger me back to those unpleasant memories of why I needed those big guns if I used them again in 2019 – especially if I’m trying to use them to stop thinking about 2018 to begin with.

Yes, my beaded bracelets were “new” in 2018 compared to prior crises, so they were helpful for grounding last year. And, yes, I’ve gotten used to wearing them, and they remain a useful societally acceptable wearable fidget in 2019. But – since I was wearing beaded bracelets on my worst days in 2018 as well as my best – they no longer quite distinguish between the 2018 “then” and “now.” I said, “You are here; this is now” in 2018 as well as in 2019. So, that too, can only remind me that (at least) I am no longer a child and that I have adult options – but it can’t distinguish this year from last year. My reality journal is great for identifying why I feel triggered in 2019 seemingly out of the blue, and it is great for day-to-day maintenance. But, it also isn’t enough by itself for a traumaversary. None of my daily maintenance tools by themselves are enough.

Yet, I simultaneously wouldn’t want to haul out my biggest guns – such as my personalized guided meditations – for anything other than a true crisis. I don’t need to be reminded that a place outside of Hell exists and that happiness exists in 2019 the way I did last year. I’m present enough, even when feeling floaty lately, to still know that I’m generally happy and that it’s weird that I’m feeling something in my body that doesn’t match my mind or my external circumstances. I just need a little boost because my nervous system sometimes decides to hijack that happy brain for a bit.

Most grounding techniques don’t seem to consider the different tiers of grounding-type interventions that might be required for different circumstances – or different years or times of years – at all. And – despite the years of therapy and all the many books on complex trauma, dissociation and social justice that I have read – in the end it still ended up being my Partner who realized that tiered interventions might be required in self-care, just like tiered interventions are common in acute care.

Continue reading “Long Walks and Candlelight Zen-ers”

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Messages in a Bottle #13: Placebo Effects

lol - so true of periodic paralysis I Could Use A Standing Ovation, Could You? The Journey of An Anxious Girl: that's a pain in my ass
<Image Text>: Doctor says to patient, “You have an extremely rare, hard-to-treat disease. Are you trying to make me look bad?”

I bought pink Himalayan salt pills today instead of my usual generic salt capsales. I know some people think the “highest amount of trace minerals of any salt” are independently useful, but my default assumption is still that salt is salt. I have a scientific image to maintain at all costs, after all. My conception of myself as intelligent largely depends upon carefully managing my own treatment in line with medical guidelines gleaned from published peer-reviewed sources with a preponderance of evidence, etc. etc. etc.

I’ve been called stupid plenty of times in my pre-ADHD-diagnosis days, so even though I have an excellent track record of identifying what is going on with me and my sibling – even when the medical establishment itself is befuddled – I have only ever learned to (mostly) trust myself because I can always cite my sources. It isn’t just me claiming something is true, it’s “the literature.” The bully-in-my-brain is far harsher than any true academic peer review I’ve ever received. I can’t point to a pile of studies that suggest that one type of salt is better for dysautonomia regulation than another, so thus it isn’t. It could be the greatest thing, since, well, normal salt, and I would remain a skeptic until there’s been at least one meta-analysis.

I’m not buying the pink stuff because I think it will work better; I’m buying the pink stuff because I’m hoping it will taste better. I have heard from numerous qualitative narrative sources with “lived experience” (aka Facebook groups) that it tastes better, or, at least, that it comes with a better pill coating that makes it taste less like anything. Even after two years of taking salt pills, I still gag a little three times daily when I take my prescribed grams of salt daily for dysautonomia. I know there are white salt pills out there that are so well-designed that they truly do taste like nothing. In a world where science can design “burpless” non-odorous fish oil tablets, simply masking the taste of pure salt isn’t an intractable user-design challenge. But, those resulting fancy “sports performance” salt pills are almost twice the cost of simple salt pills. Since I take half a dozen of them daily, that cost differential adds up.
Today, though, Amazon had a sale that reduced the cost of pink salt pills with an external pill coating to the same as the uncoated white salt pills that I normally buy. I jumped on it. Even for a month, it would be nice not to have to choke down the taste of pure salt in the morning. (If you don’t have dysautonomia, grab your salt shaker and shake it into your mouth immediately upon waking up. That should give you a sense of why taking my morning uncoated pure salt pills remains so unappealing even years later!)

I readily admit that this sale could set a dangerous precendent as – after a month of potentially not gagging a little three times daily – I might not have the willpower to return to the cheaper stuff. I still suspect that even if I do end up shelling out more regularly for pink Himalayan salt tabs, it will still be because of my taste preference, not because some salt is better than other salt. I have that self image to maintain, after all.

I could be wrong though. I have an excellent track record of identifying my own symptoms once they rise to the level of being so intrusive I can’t ignore them anymore. I can be fairly oblivious to sub-threshold issues. This morning’s purchase reminded me of one of those times when I convinced myself I was falling for the placebo effect, but I had accidentally stumbled onto a real medical issue that benefitted me to treat but would probably never have risen to the surface if not for my own ADHD inattentiveness.

This week’s Message in a Bottle is the story of how I accidentally empirically detemined that I was deficient in zinc simply because I failed to plan ahead. I wrote up the experience in a post that I originally intended for my nascent blog in 2017, but by the time I actually got the zinc test that confirmed I was deficient, I had forgotten about it. Any memory that I had ever written that post remained lost to the far corners of my brain – though I do take zinc and get my levels checked every six months – until this morning. It’s a bit of a mistake to claim that there is no filing system within the ADHD brain. If there wasn’t, I’d never have been able to retrieve the memory in response to any reminder at all. It’s more like…there’s a poorly designed filing system based on quixotic semantic associations that change every few months.

I couldn’t retrieve the appropriate filing index for “I once wrote a blog post about wondering if I had zinc deficiency” when I was tested for zinc deficiency. That would be too simple. I could retrieve that post after buying pink Himalayan salt pills this morning because the index was actually tied to the semantic category of “all the things in the world that might cause placebo effects.”

Also, for anyone wondering, yes, there have been a few published studies suggesting that zinc can mitigate some ADHD symptoms in those with measurable deficiencies. But, its effectiveness seems to be limited to symptoms of hyperactivity and impulsiveness. Thus, zinc itself is probably not ever going to help me remember whether or not I have written any posts about zinc deficiences. However, paradoxically, having my rather “unique” mental filing system and network of semantic associations has actually been one of the most beneficial aspects of having ADHD for me as a scientist. While everyone else is thinking “B” when “A” is mentioned, I’m usually the one activating “X, Y, Z” and going “but, umm, what if it was actually this…” (Also the one going “I need to zinc think about this for a moment” because once I realize what they might be missing, I also realize what I might be missing, too!)

Continue reading “Messages in a Bottle #13: Placebo Effects”

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. 

Continue reading “Messages in a Bottle #12: Six Degrees of Kevin Broken”

Trust in Mental Health Treatment #5/Where’s Whoopsie #19: Ire of the Storm

The reason I am awake at 4am is below. It is also, apparently, in the papers (or, at least, the digital online copies of the “papers” since it’s 2019 and I don’t remember what any dead-tree paper looks like outside of my intimidating sketchbook…)

I’ve been noticing an uptick recently in the number of media reports of horrible things happening in psychiatric inpatient facilities and other state-funded “care” facilities of various types. There probably hasn’t really been an uptick in the number of them happening, just an uptick in the number of them that I’m immediately aware of given that I now follow a number of blogs that share such things. Sadly, many of these blogs have shared them because the blogger was/is a patient of one of the facilities involved in the scandal, and they aren’t surprised by it. Or, the blogger has shared a personal story of a recent experience at the hands of the system to draw awareness to how even facilities that aren’t in the papers can still act humiliating and degrading towards their clients. These bloggers are trying to create awareness of the full range of mistreatment that occurs at such places via their own past and present experiences. To these bloggers, I’m very sorry for what you’ve experienced and very proud of you all for speaking up, often non-anonymously.

Continue reading “Trust in Mental Health Treatment #5/Where’s Whoopsie #19: Ire of the Storm”

Offer What Light You Can

Content Warning: I began my Reality Journal on March 7th, 2018. Astute readers might realize that, if we are almost to the one-year anniversary of the creation of that journal, we have already passed the one-year anniversary of its inspiring event. I can somehow concurrently not remember enough details of that night because of dissociation and have vivid emotional flashbacks and nightmares about what could have happened. I’ve tried to process that night in therapy recently, and I’m revealing more details by default in this post. Those details are dark, but they are in the past. Though I write about something horrible, know at least that it is not something horrible from my present. With the 9th Circle of Hell, I know I must be very clear about time or it could be confusing. Be safe when choosing to read this post. If you are not in a good mental place to read about the abuse of the vulnerable in 2018, please don’t. If you do read, please read to the end. The emotions in this post are not directed where they might seem from a cursory glance. Given that this post addresses the Disability Day of Mourning, please also be respectful that, though the worst possible outcome of that night in 2018 did not happen for my family, it did happen for others. My nightmares are others’ realities. The Disability Day of Mourning honors those realities.

Continue reading “Offer What Light You Can”

Trust in Mental Health Treatment (Part 4): Choose Your Own Adventure

So, I potentially have good news. I’ve gotten to the final round of the interview process for a new job in my same city. It’s what I do now but with a different organization. I’ll update eventually whether I got the job, but talking about it right now feels a bit too much like tempting fate. I’m not a fan of pure CBT, but even I’ll admit I’m engaging in a bit of magical thinking by staying silent. I know, I know. However, PTSD and its sense of foreshortened future mean talking about anything positive that hasn’t happened seems like it will only make me look like a fool when it doesn’t happen.

I have no such qualms, though, about talking about my fears of what will happen if I get the job. C-PTSD is fine with that. The commute will be just far enough that I won’t be able to make it to my therapist during her normal business hours. She was able to do a limited number of phone sessions while I was in the 9th Circle of Hell last summer because she knew that was an active trauma crisis, but she can’t, unfortunately, do regular phone sessions. I’ll also have to go to trauma yoga on Saturdays instead of during the week. That’s…not terrible. But, it will mean a bigger class in front of which to modify my yoga-for-hypermobility. There will probably be social anxiety compared to the three people that regularly go to the class I currently attend, but I guess I can live. How unsettled I feel not being able to attend weekly therapy, though, is one reason why I never fully wanted to develop trust with a therapist in the first place. Not all therapists are the abuse-permitting social workers of the 9th Circle of Hell, but, in the end, they are all running businesses. They’ll only modify so much, so my brain (bully and other parts) says don’t depend on someone for whom helping me lasts only as long as I am convenient. (Alongside the issues I wrote about in the first three parts of this series.)

Forget attachment. I’m still a survivor of enough systemic abuse that I’m shocked I even got to trust with anyone who is part of a system. But, shockingly, I did, and I don’t see myself being the kind of person for whom lightning strikes twice. My therapist attempted to suggest there might be others closer to my potential new workplace whom I could trust, but she shut up quickly upon seeing my look. She then switched to, “Ok, I think you are strong enough that you could do more like once a month. I think you’ve been through enough with irregular support during the Crisis of 2018 that you can manage in 2019.” I’d be willing to take a half day to see her once a month during her hours. I’ll admit to being scared of tapering therapy, but not scared enough to contemplate finding another therapist. The legacy of systemic abuse runs deep, and the system she is in – and the others that both my insurances have covered for outpatient therapy – are really not trauma-informed. She’s the rare exception in a clinic I’d otherwise bitch about. (My psychiatrist, who is not necessarily trauma-informed for most but likes me, has Saturday hours. I could keep seeing him.)

I’d actively choose once a month therapy over trying again with anyone else. But admitting out loud that therapy was an important part of my support system during the Crisis of 2018 was terrifying. What if I’m not really strong enough yet to taper? Last year was pretty damn re-traumatizing.

What if I shouldn’t even be looking for a new job at all because I don’t have the spoons? The commute isn’t just too far to make therapy: it’s also a commute at all. I’m currently a remote worker, and that saves a lot of physical spoons. It doesn’t save mental spoons, though, I’m only a remote worker because I exist within a limbo wherein my boss finds me too useful to purge, but too much of a hassle to talk to.

When I started to panic-think maybe I should just stay with my current company, my therapist very quickly shut me down by reminding me how many of my boss’s communications she has read while I cried. As she has stated, she “can’t ethically diagnose someone” she hasn’t met. But, while she can’t speak clinically, she did suggest that I do some serious research into the various presentations of narcissism and think hard about why my current boss was able to trigger full-scale PTSD episodes when I still saw him in person. 2018 wasn’t the first time I had to testify to ongoing abuse in the 9th Circle of Hell. I testified against the Thesis Defense Rests Stop the same week as my thesis defense (hence the moniker). Yes, each successive trauma adds a straw to the camel’s back. But my boss…also reminds me of someone who abused me personally in a way no one outside the 9th Circle of Hell ever has in my entire life.

The day of my end-of-year-review – which perhaps I will eventually write about – was a perfect example of my the way my boss can start the day in such a towering temper I wonder if I will still have a job at the end it, but then whiplash to being conciliatory to the point he asked if I could use more physical accommodations. What changed in between? A combination of a) something I produced being very well received by clients on a call between the beginning of the day and my review and b) letting him take all the credit for it. With my history, my instinct is to roll over and hand off intellectual credit for anything I do to anyone who scares me because C-PTSD says “stay safe by staying out of sight.” That…works with my boss. It’s probably a big part of why I got concessions and the rest of my office got fired last year.

But, as my therapist notes, he exacts a cost in mental spoons that is likely more damaging to me than the cost of the physical spoons from commuting. It’s not generally a smart idea to work for someone who pings your PTSD to flashback to childhood abuse. Even if I hadn’t experienced childhood abuse, working for someone who can flip moods so drastically and so quickly is not a great idea, period. Nor is working for someone who has flat out stolen the academic work of all those who are under him in a field that typically recognizes subject matter experts as experts. There’s also the pesky fact that I still have the gut instinct that the company itself isn’t financially stable, and I could lose my remote job by 2020 even if I’m able to keep my boss perfectly happy until the day the doors close for good. I’d rather choose my own adventure now, while it still is a choice.

Therapists don’t usually tell you what to do, exactly, but mine seemed worried enough by the prospect that I’d not take a job if I got it because of the fear of losing one piece of my support system that she ended with “we’ll work out what happens with therapy, but I really don’t think you should trust your boss longer when you have another option.”

We’ll see what happens. I don’t know if I will know yet by next week whether I’m their final candidate. Whether or not I do, next week’s post will be a review of the strategies that kept me sane while testifying to abuses in the 9th Circle of Hell in 2018 without consistent access to therapy. Maybe if I write out what helped me then, it will help others unable to access good therapy now, whether because of a therapy break, because they only have access to those horrible therapists in their area that are the reason I’m so afraid of ever starting over with someone new, or because they can’t afford decent care. (The U.S. sucks at mental health, did I ever mention that?) And, maybe it will also help to reassure myself that I can eventually return to working in a real office – with its increased physical demands upon my EDS/dysautonomia – because the mental benefits from reduced anxiety, depression, PTSD and panic are worth it. Maybe it’ll convince me that I can be strong later since I was strong enough before.

Also, if I flat out state that I won’t be writing about what happened with the job next week, then perhaps  I won’t feel internal pressure to “follow up” with the “bad news” my brain thinks it will inevitably receive. I write a lot about failure on this blog, but I’m trying at least this week to tell myself someday I might also write about success.

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

 

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.

Continue reading “Messages in a Bottle #9: The Archivist”