End-User Experience

SelfCareRevelation
<Image Text>: “Most People have ‘Ah ha’ moments. I have “Oh for fuck’s sake, fuck this shit” moments.” Note: this is a pretty apt description of the process of me finally accepting that I’m better off actually taking care of myself rather than letting the opinions of others prevent me from benefitting from readily available accessibility aids that would save me critical spoons.

Movie theaters have become events in and of themselves. One that opened near us recently has a full restaurant inside of it where patrons can eat at traditional tables before the movie – or order their carnitas nachos to be served at tables inside the theater while they recline in their heated leather seats. The theater also boasts gourmet versions of standard guilty pleasure treats made with all natural, non-high-fructose-corn-syrup ingredients like white raspberry slushies and cheddar and caramel popcorn.

And – although they offer treats with more FODMAP-friendly ingredients that make me less likely to need them in a hurry (if you know what I mean) – they additionally offer bathrooms with marble stylings and individual sinks each equipped with their own personal accoutrements and air dryers so I’m not missing even more of the movie than necessary getting stuck waiting in a line when I’m hoping to rush back to my seat after an inevitable potty break during the three-hour-long Avengers: Endgame.

All of this luxury comes with a price tag roughly 20% higher than a standard 3D theater without these little extras. My Partner and I only see a handful of movies in a theater each year. We figure for those movies we judge worthy of a night out, we might as well make it a true experience. (Also, those bathrooms. Seriously. That alone is worth 20% more to any spoonie with GI issues as part and parcel of their diagnosis…)

Unfortunately, the first time we saw a movie in our new elaborate dine-in theater, the experience was missing one detail that further explains why, in the end, it hasn’t only been the price tag that has limited the number of films we’ve seen in a theater each year. Closed Captioning.

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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”

Work/Life Int-egg-ration

I used to think my boss’s term for work-life imbalance was something he made up. I don’t know why I thought this, other than that he always said it so confidently and without attribution. I’d never have had the confidence to pass off a saying that often without crediting the original source, so I just assumed. Thus, I figured I could never share it on my blog because it would be too personally identifying. I don’t know why I never just googled it. If I had, I’d have established long ago that the term isn’t something he came up with. He cribbed it from a Forbes article – or possibly Berkeley’s MBA program – and just takes it to illogical extremes.

Why should I have assumed, given that he liberally borrows his own employee’s work at conferences without remorse, that he’d somehow do otherwise with awful aphorisms? (Of course, the way he adds on that we should all be so grateful for our “fulfilling” job that we are willing to work many nights and weekends to hit our growth goals even as he screams at us might be considered ‘original!’)

There are two kinds of people who live permanently only in the “now” or the “not now.” Time blind ADHDers – and bully bosses. How does one tell the two apart? Well, in my experience, folks with ADHD will inevitably blame themselves for any missed deadlines or forgotten important project components – usually to the rejective sensitive extreme – while self-absorbed bosses will simply assign major deliverables with less than twenty-four hour notice to employees whenever they suddenly realize that they actually need something for a conference that they could have requested weeks ago if they cared at all about the “life” part of “work-life integration.”

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Read Bad Books

Why do Targaryens make terrible stockbrokers?

Their assets always end up in a fire sale!

I am no longer sure I’d call anything George R.R. Martin writes “good.” He burned some bridges with this leal reader with Winds of Winter. I finished a real-life Ph.D. with ADHD in less time than it has taken GRRM to write one book. I’m more than fine with HBO scripting the only conclusion to a Song of Ice and Fire to ever see the light of day. At least it means that there will be a conclusion. There is, however, still something disheartening about getting most of the way through the book GRRM wrote instead and realizing he only covered the first half of 300 years of Targaryen history. Fire and Blood: 300 Years Before Game of Thrones (a Targaryen History) is an epic monument to paid procrastination and GRMM still couldn’t even finish it? Really?

That is…disappointing. Especially given the fact I am listening to the prequel on audiobook, and it is 26 hours long! I’ve been encouraged by my neuro-ophthalmologist to rest my eyes when I don’t need them for work because their ability to focus together continues to decline. Thanks, Ehlers-Danlos Syndrome. Listening to GRRM’s words instead of reading them makes certain quirks of his writing almost painfully apparent. (I wonder if his editors were equally burned by this point and so desperate to ship anything new of his that they only gave Fire and Blood a minimal once-over?)

Three-quarters in, I’m not sure from a literary standpoint whether Fire and Blood is actually well-written.  It overuses words. Like, seriously overuses them. Like “overuses them so much that it has become a game for my Partner and me to take a non-alcoholic drink every time he uses the word ‘leal.'” (GRMM is obsessed with loyalty, but our ‘drinking’ game has to be non-alcoholic because I’m pretty sure we’d both die if we tried to use alcohol during the playing of The Leal Deal. GRRM has singlehandedly ensured that even this girl who is dysautonomic has consumed many more than her recommended liters of water daily this week.) It also has an annoying habit of setting up mysteries that are never resolved. “What was in that letter” will never be known to readers. I’m fairly sure GRRM knew what was in the letter – it’s his imagination after all – so would it have killed him to tell us? What does playing coy accomplish in a one-off?

I am not sure, for these reasons, whether what I’m currently reading is actually good. I am sure, however, that admitting I’m reading it is, at least, not embarrassing. That is not true of many of the other books I have read over the years.

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Improv #15: Twitterpated

*Knock knock*

“Who’s there”

“Hashtag”

“#who?”

“#whoknewTwitterwasoccassionallyuseful? Not me, at least not until today…”

I do not take the full – or even the half – advantage of social media that a blogger is supposed to, so I can’t actually add my contribution to the #AbledsAreWeird Twitterstorm on Twitter itself. I can say I have been laughing myself silly over that hashtag today. For any spoonie who hasn’t seen it, I highly advise you to check it out when you need a break from the world today.

Since I am not twitterpated by the idea of adding yet another form of social media for my poor ADHD brain to have to manage in general, I’ll add the contribution I would have tweeted if I bothered to maintain a Twitter presence for my blog here instead. (But, though I’m only posting here, seriously go check out the actual hashtag on Twitter too!) I will, though, at least conform to Twitter rules and keep my contribution to 280 characters:

Improv actor share:”Doc 1st thought symptoms were chronic, but thank God my infection was acute. How could I live w/pain forever? Life wouldn’t be worth living!”
Lav(next up w/visible cane):”I guess my share is I’m chronically ill & life is worth living? Kthanxbai”#AbledsAreWeird

Yes, that’s a true story, and from very recently. No, I have no idea what, if anything, I should do about it. The person who made the comment was just a student in a class with me. That class is now over. In principle, I won’t see them again? (I mean, it’s not like I’m going to choose to perform in an indie troupe with someone who’d speak like that when I’d previously shared that I occasionally require accommodations for the physical parts of improv because of my chronic illnesses and they still thought that was an appropriate way to phrase a weekly highlight…)

But, the instructor, who is a regular and very serious theater performer, also did not seem to get that there was anything amiss about that comment. This speaks to the broader complete cluelessness about spoonie sensitivity that the hashtag also makes apparent. There’s clearly a need for more awareness among the theater crowd about a) why a spoonie’s life is worth living, even with their chronic illnesses and b) why if an abled performer doesn’t happen to agree, they should still keep their big fat mouths shut about it since at least 1 in 4 of their audience members will also be living with some form of chronic physical or mental illness.

The theater has been encouraging “tough conversations” around diversity and women’s issues in the theater recently. So, it seems like it might be an appropriate time to point out that many performers – and audience members – are also members part of the largest minority group in America. It is just as critical to have “tough conversations” around how to speak about disability as it is to discuss how to speak about race, class, culture, religion and sexual orientation. I am getting really sick of even so-called Progressives managing to include just about every possible form of inclusiveness except disability in their sensitivity training. I’m also not really high enough up in the theater to know where to start to change the narrative, unfortunately…

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

Improv #14: Sing the Moment

*Knock knock*

“Who’s there?”

“The Perfect Moment”

….

….

“The Perfect Moment who?”

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

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

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

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

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Candy Canes

Image result for pokemon go pikachu santa hat
Image: Pikachu in a Santa Hat from Pokemon Go.

Pokemon Go had a super event this weekend, in which all their previous special events were combined. Increased spawn rates for all prior Community Day Pokemon were available all weekend, but, within the weekend, there was one three-hour period wherein all the prior Community Day event bonuses (including double candy and stardust) were also available at once.

Because it is winter, everyone is sick, and I’m still destined to catch every acute illness that I am ever exposed to, I was getting over being sick and the concomitant flare this weekend. I was aware of the spoon cost to participate fully, but self-care sometimes means caring for my mental health even when it costs my physical health.

I’ve considered mobility aids before. There’s probably some residual feeling that I’m a pretender who doesn’t deserve one wrapped into my prior avoidance. It’s hard to get over a lifetime of ignoring your own needs because someone else has it worse. Mostly, though, I haven’t used one because I haven’t seen how it would help.

All the canes I’ve ever been exposed to are sturdy, wooden things that have to be held onto like an umbrella.

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The Trolley Persecutor

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

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

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

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

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

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

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Improv #11: I’m Mrs. Bright Blogs

*Knock knock*

“Who’s there?”

“The Bright Side”

“The Bright Side Who?”

“The Bright Side Who Doesn’t Actually Exist”

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

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

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

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

Which sucks because…

Continue reading “Improv #11: I’m Mrs. Bright Blogs”